tag:blogger.com,1999:blog-13698673215017325622024-03-14T03:00:51.786-07:00Confessions of the Chromosomally EnhancedA sister documents the sibling relationship with her adult sister with Down syndrome, who inspired the adoption of her daughter with Down syndrome. It's an honest perspective on adults with Down syndrome, as well as the developmental journey of a children with Down sydnrome. Follow these two "Divas of Down syndrome" as they grow, learn, teach, and inspire. ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.comBlogger723125tag:blogger.com,1999:blog-1369867321501732562.post-77431153456346682212023-11-19T09:59:00.000-08:002023-11-19T09:59:27.892-08:00Happy Belated Down Syndrome Awareness Month<p><i> Today, we have a guest post from a teacher who developed an incredibly close bond with Josie during elementary school. It was written in honor of Down Syndrome Awareness Month, but October has come and gone and here we are, still playing catch up. However, the sentiment remains. Without further ado, allow me to present the lovely Ms. Kellie: </i></p><p><i></i></p><div class="separator" style="clear: both; text-align: center;"><i><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhxFzi_ruaweWeFQ6fowPSkSxqHdnvKUzpAAX7f8FSd93N2CAv_j6K4CvWspgaAZCUZuN9f1JsCWzJ3B0A1fmq0lC3kdZs4CMpjRQs-z1NsJfR7zKOzvUYRlIqMUNuyZfc7w7FanyB-g2WjBQjLUPtLOubE9KIFVWoosRN-4rMbIbBq7AbIti5apzlEPpZo" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="683" data-original-width="525" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEhxFzi_ruaweWeFQ6fowPSkSxqHdnvKUzpAAX7f8FSd93N2CAv_j6K4CvWspgaAZCUZuN9f1JsCWzJ3B0A1fmq0lC3kdZs4CMpjRQs-z1NsJfR7zKOzvUYRlIqMUNuyZfc7w7FanyB-g2WjBQjLUPtLOubE9KIFVWoosRN-4rMbIbBq7AbIti5apzlEPpZo=w491-h640" width="491" /></a></i></div><i><br /></i><p></p><p><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">It’s easy to write about someone who means so much to me.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Here’s my story this October—and I remain ever grateful that your daughter graced my life when she did. 🩷</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Here you go:</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">There’s always that one student. She challenges you, brings you to tears, encourages you, and makes you laugh—all within 3 minutes. And on the gloomy days her smile is the sunshine you yearn for. This is Josie.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">This past year I’ve been met with a challenging diagnosis of a vestibular disorder along with unexplained intracranial hypotension. Multiple trips to the medical center has secured a medical team that monitors my symptoms. Most concerning is my balance, my hearing and the anxiety that unfortunately comes with it. Recognizing that I will never again feel as I once did can be consuming. But it’s those days where I turn to Josie and what she taught me.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">So in this month of Down Syndrome Awareness, I will once again share the lessons I learned and now live by—all because this little girl was brought into my life. And maybe, it’ll be a reminder to you, too. Because Josie is faced with challenges every day, even since birth. And yet, she chooses to own it without complaint.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Here’s what Josie taught me:</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖 Embrace all whom you meet. Literally. Not just a quick squeeze. But with your whole being. When Josie hugs, you can feel her heart beating. And when she finally releases, you have a sense of calmness, renewal, peace.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖And when there is no one to hug? Wrap your arms around yourself and squeeze. It works, trust me.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖 Dance. Even when everyone IS watching. Shake those hips!</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖Enter a room with your head held high, with confidence bubbling over. You’ve got this!</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖Sing. Sing loud. Even if you think you are off key. Sing.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖Be colorful. Make a statement. Every day.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖It’s okay to be obsessed with goldfish crackers and the color pink.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖It’s also okay to feel frustrated. Overwhelmed. Curious. And impatient. It’s okay to…. just be.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖When faced with something you lack interest, simply hold up your hand, state ‘Not a fan’ and then walk away.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖 When asked how you are doing, respond with ‘I am incredible!’ Look on the bright side! Life is beautiful!</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖Appreciate differences. Josie doesn’t judge. We each had different qualities to bring to the friendship. I was my most confident when I was with her.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖Laugh! Until you are gasping for air! See the humor in everything.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">💖Remember each day you have an opportunity to shine your light and have a positive impact. Josie isn’t aware of the joy she brings. And she asks for nothing in return. So go make someone’s day better. Be like Josie.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Happy Down Syndrome Awareness month to my favorite gal—love and miss you! Every. Single. Day.</span><br aria-hidden="true" style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /></p><p><span style="background-color: white; color: #242424; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;"><br /></span></p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhukb-q3LFTzaLVqpsjNZXa2PiD8QGhTbIUpMdt_hazbSFX20V6YMBSR2_SFyAheCabtNVT4NiHHfpHyxbeAk8dvZrTS1VWvyjlpraYIYS9NQtD7-2GLRIn4XaYrVXbFcOR08ZoTecNCVbTLsZUGAobJv9dRW3G3AfOFlbbjvjiz_LD7MEdZD4_KYCiTihZ" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img alt="" data-original-height="710" data-original-width="400" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEhukb-q3LFTzaLVqpsjNZXa2PiD8QGhTbIUpMdt_hazbSFX20V6YMBSR2_SFyAheCabtNVT4NiHHfpHyxbeAk8dvZrTS1VWvyjlpraYIYS9NQtD7-2GLRIn4XaYrVXbFcOR08ZoTecNCVbTLsZUGAobJv9dRW3G3AfOFlbbjvjiz_LD7MEdZD4_KYCiTihZ=w360-h640" width="360" /></a></div><p style="text-align: left;"></p></blockquote>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com3tag:blogger.com,1999:blog-1369867321501732562.post-8541054454092449892023-10-30T10:22:00.000-07:002023-10-30T10:22:54.342-07:00Accepting Help <p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJQAOCFgtCylE5Mf1EdjT7u2fjPGN3fEYekhuESVEG5OcnJtZh4EFPwfuABcmHmKSJcRiML_NYaYAI3WknTQOUpNXHPuACkphTqUwQE3BoDCWfBfKeZSWwugfM_n0XbX4RR4KJW9oyRYNoE8cXCXTYzHOZtubwXwK7lqg4Ugs6Noffy_oWs-TANs2o91Q_/s4032/Josie%20and%20Leanne%20October%20hug%20copyright.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJQAOCFgtCylE5Mf1EdjT7u2fjPGN3fEYekhuESVEG5OcnJtZh4EFPwfuABcmHmKSJcRiML_NYaYAI3WknTQOUpNXHPuACkphTqUwQE3BoDCWfBfKeZSWwugfM_n0XbX4RR4KJW9oyRYNoE8cXCXTYzHOZtubwXwK7lqg4Ugs6Noffy_oWs-TANs2o91Q_/w640-h480/Josie%20and%20Leanne%20October%20hug%20copyright.jpg" width="640" /></a></div><p></p><p style="text-align: left;"><span style="font-family: helvetica;">It
has been one year since this poor blog was updated. As the kids get
older, life gets busier with extracurricular activities and such. Leanne
has many medical appointments, but she never complains. With the help of
a wonderful caregiver named Cindy, Leanne is also able to participate in many
fun activities including Special Olympics bowling and cheerleading,
participating on a special needs dance team, and volunteer work. Having
the support of a paid caregiver means that everyone receives high-quality
attention as well as maximum opportunity to participate in fun activities, as I
still haven't figured out how to clone myself and be in multiple places at
once. Even though I know now that hiring Cindy was the best move for
everyone, accepting that I needed help in this domain was not easy for me.</span></p><p style="text-align: left;"><span style="font-family: helvetica;"><br />It's all too easy for caregivers to fall into the trap of
martyrdom. We want to believe that we can do it all; that we, alone, can
be everything to everyone. But this mindset can give way to fatigue and
burn out. Josie and Leanne share the same case manager, assigned by the
state, to help make sure they can access the services they need including
supported employment, transportation, respite, housing, and healthcare.
We're fortunate to live in a state where many services are available to
individuals with disabilities, and yet sometimes, it's still hard to embrace
the suggestions the case manager offers. And sometimes the hoops one has
to jump through to arrange services with paperwork, waiting lists, and staffing
shortages serve as a deterrent. </span></p><p style="text-align: left;"><span style="font-family: helvetica;"><br />Often, caregivers are so overwhelmed that the idea of slowing down
enough to research, recruit, interview, hire, and train help feels like too
much to take on. Josie recently went months without a respite provider
and we managed. But as Merryn and Lydia continue to participate in competitive
swimming and many other extracurricular activities, I realized that it would be
helpful to have someone who could stay with Josie so I could shift focus to my
other kids. I embarked upon the intimidating process of emailing local
college professors in pursuit of a student who may want to work with Josie, and
I found a wonderful young lady, whose own brother has autism. She brings
over all sorts of therapeutic and educational activities for Josie and Josie
absolutely loves the 1:1 attention she offers. Josie also appreciates not
being dragged along to her sisters' activities. And mom appreciates being
able to focus on the swim meet instead of entertaining Josie.</span></p><p style="text-align: left;"><span style="font-family: helvetica;"><br />Caregivers, please know that I get it, but it's okay to seek
help. It is absolutely worth the hassle. Everyone is better
off. In fact, accepting help can enhance your relationship with the
individual that you care for, and it can allow you to be a better version of
yourself for everyone else in your life. </span></p><p><o:p></o:p></p><p><o:p></o:p></p><p><o:p></o:p></p><p>
</p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com1tag:blogger.com,1999:blog-1369867321501732562.post-33093489375350215682022-10-29T18:24:00.003-07:002022-10-29T18:24:36.242-07:00Down Syndrome Awareness Month - The Elementary Years<p></p><div style="text-align: center;"><span style="font-family: arial;"> <i>Josie graduated from elementary school last spring and I've been meaning to write a blog post in tribute to the team of educators who enriched Josie's life immeasurably during these formative years. </i></span></div><div style="text-align: center;"><span style="font-family: arial;"><i><br /></i></span></div><div style="text-align: center;"><span style="font-family: arial;"><i>I'll never forget the first day of preschool. I walked Josie into the building, left her with strangers, returned to my car in the parking lot, and bawled. When you have a child who is especially vulnerable - medically fragile, cognitively delayed, with limited communication skills - it's terrifying to entrust her to others. Had I known that day that Josie would find her way into the arms of a team of women who would love her as though she were their own child, it would have spared me so many tears.</i></span></div><div style="text-align: center;"><span style="font-family: arial;"><i><br /></i></span></div><div style="text-align: center;"><span style="font-family: arial;"><i>Today, out of the blue, in honor of Down Syndrome Awareness Month, one of those women sent me the most powerful summary of her experience working with Josie. Not only is it more eloqunet than anything I could have written, it also underscores an investment that far exceeds my daughter's educational requirements. It's an illuminating testimony to a relationship that cultivated mutual growth, respect, acceptance, and love. Ms. Kellie, thank you for this moving tribute, and thank you for allowing me to preserve and share it here.</i></span></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWVB_TYuH3ioTSZjI32Dqq_hyYDYTBHe30Opk6HHx7AcXFgdi8Ttz6kpYVNBhtKCwB7eSKRKO4XJvgDghMWLrz_QC8ASWULrTuFeexrsy5wY7rvrHoXQQrb75SdchM9SJklo3zgyVLn3MLHB_V5Fb52sQh2KvLVQ1zB_yCNasbiCTNWDJAjlYdxFHLLA/s2667/thumbnail_EFCC9B70-5A8F-4EFA-8B6E-376E15949A60002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><span style="font-family: arial;"><img border="0" data-original-height="2008" data-original-width="2667" height="482" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWVB_TYuH3ioTSZjI32Dqq_hyYDYTBHe30Opk6HHx7AcXFgdi8Ttz6kpYVNBhtKCwB7eSKRKO4XJvgDghMWLrz_QC8ASWULrTuFeexrsy5wY7rvrHoXQQrb75SdchM9SJklo3zgyVLn3MLHB_V5Fb52sQh2KvLVQ1zB_yCNasbiCTNWDJAjlYdxFHLLA/w640-h482/thumbnail_EFCC9B70-5A8F-4EFA-8B6E-376E15949A60002.jpg" width="640" /></span></a></div><div style="text-align: center;"><span style="font-family: arial;"><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💙💛October is Down Syndrome Awareness Month! 💙💛 Here’s a story about a little girl doing big things:</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">After many years at home with my own children, I began feeling the nudge to jump back into education. Joining a special education team at an elementary school close to home gave me just what my teacher heart needed. Surrounded by a supportive teacher and dedicated associates, I had found my new home.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Now. Meet Josephine.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">My new student was smart, a bit sassy, very determined, a little stubborn, absolutely adorable and well, she has Down Syndrome.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">My early days with Josie were met with struggles and refusals, with her favorite word being ‘no’. Her abilities far outweighed her disabilities, and oh was she smart. So smart, she knew I needed HER more than she needed ME.</span></span></div><div style="text-align: center;"><span style="font-family: arial;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGd7Ul5iolsabx4yq3_jWDaGxH7zUVP5R9klDo7Q4DCFRdNztpXIGj_Q30B7cD9ZHNs7QgiJ8w5c3m2S5PXTcYmVnDfR3vn0Wgr9TctofOK5WmGw2CbGRENxGeqtZY0KZpsu-8AWPFQD2ki-WcGfoHcu0lP5qguy_PV2Oipx2iWnZoaK4ExGnFKAiEHQ/s2667/thumbnail_IMG_9017013.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="2667" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGd7Ul5iolsabx4yq3_jWDaGxH7zUVP5R9klDo7Q4DCFRdNztpXIGj_Q30B7cD9ZHNs7QgiJ8w5c3m2S5PXTcYmVnDfR3vn0Wgr9TctofOK5WmGw2CbGRENxGeqtZY0KZpsu-8AWPFQD2ki-WcGfoHcu0lP5qguy_PV2Oipx2iWnZoaK4ExGnFKAiEHQ/w640-h480/thumbnail_IMG_9017013.jpg" width="640" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">How would I ever be able to reach this little girl? The more I failed, the more I wanted to stay. I quickly realized it wasn’t just what I could give HER. She gave and gave and gave. Slowly we built our trust in each other.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">For three years, she took me by the hand and helped ME grow. I no longer worried about following a schedule. Often I would joke that I was on ‘Josie time’. I learned to live in the moment with intentional focus. When I was with Josie, nothing else mattered. Truly.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Spending my days with Josie led to me discovering things about myself.</span></span></div><div style="text-align: center;"><span style="font-family: arial;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvxdE9BXhIEsjsgXmCmpX9MST3xakj2hfIDq2AfJo_8aRQpAvh1GKqV_PI_e66qBKwPr1_LTltbC8_yU-gxuQwPFhhnh2qrX5x5wAh-l30nsHbsm_a7aj4kANNJT2qX3uNbDju5YOR_CZkXIyD9tBdcutcRTdRQOFQqXrvdr5RpC5365bT3oeHuNaZTA/s2000/thumbnail_IMG_0933006.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1494" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvxdE9BXhIEsjsgXmCmpX9MST3xakj2hfIDq2AfJo_8aRQpAvh1GKqV_PI_e66qBKwPr1_LTltbC8_yU-gxuQwPFhhnh2qrX5x5wAh-l30nsHbsm_a7aj4kANNJT2qX3uNbDju5YOR_CZkXIyD9tBdcutcRTdRQOFQqXrvdr5RpC5365bT3oeHuNaZTA/w478-h640/thumbnail_IMG_0933006.jpg" width="478" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">So here it is. Here is what Josie taught me:</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖 Embrace all whom you meet. Literally. Not just a quick squeeze. But with your whole being. When Josie hugs, you can feel her heart beating. And when she finally releases, you have a sense of calmness, renewal, peace.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖And when there is no one to hug? Wrap your arms around yourself and squeeze. It works, trust me.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖 Dance. Even when everyone IS watching. Shake those hips!</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖Enter a room with your head held high, with confidence bubbling over. You’ve got this!</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖Sing. Sing loud. Even if you think you are off key. Sing.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖Be colorful. Make a statement. Every day.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖It’s okay to be obsessed with goldfish crackers and the color pink.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖It’s also okay to feel frustrated. Overwhelmed. Curious. And impatient. It’s okay to…. just be.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖When faced with something you lack interest, simply hold up your hand, state ‘Not a fan’ and then walk away.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖 When asked how you are doing, respond with ‘I am incredible!’ Look on the bright side! Life is beautiful!</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖Appreciate differences. Josie doesn’t judge. We each had different qualities to bring to the friendship. I was my most confident when I was with her.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖Laugh! Until you are gasping for air! See the humor in everything.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">💖Remember each day you have an opportunity to shine your light and have a positive impact. Josie isn’t aware of the joy she brings. And she asks for nothing in return. So go make someone’s day better. Be like Josie.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDgDblGXmn-P2xl03fHxAzcPdIibwP3Vjr5gQ0jSIAwwkaLpd6PfVJyPSNaPNJS2VADtmyfPGYhKKTMCTTQnV1BdHvfNe__7XbWey7YgURl44KC99q2nRPkmRhjjw856YBosE7hCt5GumX35rhxtOhbsHarpq-Am-AjTtRsaMyNgr6eD7GknPaK4fEWQ/s2000/thumbnail_IMG_5438011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1500" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDgDblGXmn-P2xl03fHxAzcPdIibwP3Vjr5gQ0jSIAwwkaLpd6PfVJyPSNaPNJS2VADtmyfPGYhKKTMCTTQnV1BdHvfNe__7XbWey7YgURl44KC99q2nRPkmRhjjw856YBosE7hCt5GumX35rhxtOhbsHarpq-Am-AjTtRsaMyNgr6eD7GknPaK4fEWQ/w480-h640/thumbnail_IMG_5438011.jpg" width="480" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Last May, amongst so many emotions, I hesitantly approached the last day of school. Josie was a 5th grader. She graduated my school. She left. Friends, it was HARD. You see, Josie was my best friend for three years. Each morning we began our day by looking in the mirror and we’d say ‘I am beautiful.’ Sometimes we’d even say it over and over until we both felt ready to tackle the day. ‘I am beautiful!’ And she is. I am a much better person for having known her.</span></span></div><div style="text-align: center;"><span style="font-family: arial;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT8Go8gENp68Y-Iwi1I0v2JRmts_S-hWXvpBEbwYuSdnCvB9EfZLieB6QQNKJSsJfNsVi9iYN1xf3tdL9_hGlBr1lc5smgo5GQgQTZJLItGiuNjoFGBX1wbmmjUpFQQw8xTx23vPAVrkpGbT7WFlaeFMdNH0b3t0v6N_H3wr5fyMxVaJIaOxghw8bybg/s2000/thumbnail_IMG_9116014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1500" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT8Go8gENp68Y-Iwi1I0v2JRmts_S-hWXvpBEbwYuSdnCvB9EfZLieB6QQNKJSsJfNsVi9iYN1xf3tdL9_hGlBr1lc5smgo5GQgQTZJLItGiuNjoFGBX1wbmmjUpFQQw8xTx23vPAVrkpGbT7WFlaeFMdNH0b3t0v6N_H3wr5fyMxVaJIaOxghw8bybg/w480-h640/thumbnail_IMG_9116014.jpg" width="480" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Returning to a new school year last August felt different. My heart was struggling. Questioning my purpose, I grabbed my belongings after what had been a challenging first week back. I pushed open the door of the building to find a very big 6th grader who, without any hesitation, ran into my arms to share that same hug I always remember. Josie came to check on all of us—to make sure WE were okay. To remind us that we can do hard things. Just like her. While she navigates 6th grade without us, the bond she shares with others is stronger than ever. And I am so grateful.</span></span></div><div style="text-align: center;"><span style="font-family: arial;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3VwQ1wzG4wFgX1yalniN9gMpv66epQrHo77y03FDZJq3GJ8zECUPyaN2QhABrNXcylcJ66ztKY9aFIar8t4ojBrrvmIMLbUTTIbgQSGWCrmQu5aQ1KKT0HXq0UchU4bxdT7BSRVpEf1g6JKZqqIm3BuAD4z7bx5l6rqla6IDXQu6X9Xd08q679-WEXw/s1333/thumbnail_image0003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1333" data-original-width="1004" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3VwQ1wzG4wFgX1yalniN9gMpv66epQrHo77y03FDZJq3GJ8zECUPyaN2QhABrNXcylcJ66ztKY9aFIar8t4ojBrrvmIMLbUTTIbgQSGWCrmQu5aQ1KKT0HXq0UchU4bxdT7BSRVpEf1g6JKZqqIm3BuAD4z7bx5l6rqla6IDXQu6X9Xd08q679-WEXw/w482-h640/thumbnail_image0003.jpg" width="482" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Thank you to my incredible Special Education teacher Stacy S. for first, trusting me with your treasured student and second, for all of your guidance. Another shout out to my fellow associate Jill K. Without you, I would have fallen many times. Your smiles and hugs were everything.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMNhxKUXco_Uul-f2NZsNe5XFLwFzKaodM9jtrEHHrS_flwWYxpDpC0Jr3virJmlkfZRIUaOgIUOTTjdkYRX6o0McRkWSRuYIZZoHUPVUGUnU1EVrAIFKpF-_-jwRMVtXW7CsI-A9gnS4dPB1RIYmMeGLkdO_bx5WpkQLtZOraXX1YLlONbMT4QbKFYw/s2667/thumbnail_A2E4EAC5-C3B2-4F9D-BC37-B8A771976186001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2667" data-original-width="2667" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMNhxKUXco_Uul-f2NZsNe5XFLwFzKaodM9jtrEHHrS_flwWYxpDpC0Jr3virJmlkfZRIUaOgIUOTTjdkYRX6o0McRkWSRuYIZZoHUPVUGUnU1EVrAIFKpF-_-jwRMVtXW7CsI-A9gnS4dPB1RIYmMeGLkdO_bx5WpkQLtZOraXX1YLlONbMT4QbKFYw/w640-h640/thumbnail_A2E4EAC5-C3B2-4F9D-BC37-B8A771976186001.jpg" width="640" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Josie is blessed with a family who loves her, challenges her, encourages her, celebrates her. Follow Josie on Instagram @catfishwithketchup and laugh, cry, and celebrate Josie with me.</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM9KhgWH7w6X4qyPIzfI_M-u_LqJ4rV0r5jhxi4U-fnKjUw3xQ4L7C16V3PNjvJWMxAKqE2E88TKsY8akbAb7Dxgq8M0qmI3wNooQzWjMKKfrhKed39mWDzI4M85s7KXwO1YJOU145ngbtzBZyuS-9uD09D7WLRyl7q6P3VqePVnyFcR1_6FuqTQYJjw/s2000/thumbnail_IMG_5348010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1500" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM9KhgWH7w6X4qyPIzfI_M-u_LqJ4rV0r5jhxi4U-fnKjUw3xQ4L7C16V3PNjvJWMxAKqE2E88TKsY8akbAb7Dxgq8M0qmI3wNooQzWjMKKfrhKed39mWDzI4M85s7KXwO1YJOU145ngbtzBZyuS-9uD09D7WLRyl7q6P3VqePVnyFcR1_6FuqTQYJjw/w480-h640/thumbnail_IMG_5348010.jpg" width="480" /></a><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">Now, go give someone a BIG hug!</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">#downsyndromeawareness</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><span style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;">#belikejosie</span><br aria-hidden="true" style="background-color: white; color: #201f1e; font-size: 14.6667px; text-align: start;" /><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2yQ4GD8jY_zjgTQYe9UWVz6DNobOhBiq4Y17paG1xq3hxFIw9xvjMEwLMyrDMPMgW_ILdaTRZoXpHHHxBEBkTvIxyJ0FjAqpYrgPJQS8mDkobAQOToDhquFU3jhMiXt7vGropS3AE3t8KkLaUKGmbVPKa0xokuUd0b3QR_tM9uqefO216fOpF3N4YIg/s2667/thumbnail_IMG_0571005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: arial;"><img border="0" data-original-height="2667" data-original-width="2000" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2yQ4GD8jY_zjgTQYe9UWVz6DNobOhBiq4Y17paG1xq3hxFIw9xvjMEwLMyrDMPMgW_ILdaTRZoXpHHHxBEBkTvIxyJ0FjAqpYrgPJQS8mDkobAQOToDhquFU3jhMiXt7vGropS3AE3t8KkLaUKGmbVPKa0xokuUd0b3QR_tM9uqefO216fOpF3N4YIg/w480-h640/thumbnail_IMG_0571005.jpg" width="480" /></span></a></div><span style="font-family: arial;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><br /></span></div><span style="font-family: arial;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><br /></span></div><span style="font-family: arial;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><br /></span></div><br /><p></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com2tag:blogger.com,1999:blog-1369867321501732562.post-1351612895701742562021-12-24T04:57:00.000-08:002021-12-24T04:57:00.723-08:00Caregiver Self-Care and Support <p><span style="font-family: helvetica;"> I used to tell my mom that she should have had ten kids. She was so maternal and she absolutely lived to take care of others. I did not inherit this gene. And now that I'm Leanne's caretaker, I realize that God knew what He was doing when He gave Leanne to my mom: she's the equivalent of ten kids! Ha! I'm teasing...a little. But in all honesty, Leanne's presence in our home has opened my eyes to a whole new perspective: Caregiver. </span></p><p><span style="font-family: helvetica;">The caregiver role can manifest from many different scenarios: parenthood, caring for an aging/elderly parent, caring for a sick spouse, and on an on...For me, personally, the distinction came when Leanne moved in. It changed everything. My children were already established in a routine. Our family of five was a well-oiled machine. Enter Leanne: it was a crash course in legal guardianship, Medicaid waivers (and wait lists), healthcare specialties (PCP, Urologist, Psychologist, Audiologist, ENT, GI, etc.), employment opportunities, volunteer opportunities, day programs, fitness programs, socialization opportunities, transportation, scheduling...</span></p><p><span style="font-family: helvetica;">In a way, it was a welcome distraction from my shock and grief over my mom's illness and passing. I did not have time to wallow; I had so much to figure out. Add a <a href="http://www.confessionsofthechromosomallyenhanced.com/2018/07/summer-of-2018-untold-story-part-i.html">couple</a> of <a href="http://www.confessionsofthechromosomallyenhanced.com/2020/05/the-most-terrifying-moment.html">health scares</a> and a global pandemic, and I quickly familiarized myself with the notion of "caregiver fatigue." </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgikQwhvrDKvb1SzKxIz6B_96p7s8spTlHt93QVYsUgwf76YIm0xJkh0Rgm4L24XPFesWhTjlO-sI1u8xbzCJPrUAWoLP3tW6hd6OTPN5O0a4r-QD_9c0jXz8_qCg9G7b3DzbpWqO0U8go9kJ7xvqTEV0fbIjHku-A2QMXT3gLt7nER0FLSPHZLjHsq4w=s1000" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="800" data-original-width="1000" height="512" src="https://blogger.googleusercontent.com/img/a/AVvXsEgikQwhvrDKvb1SzKxIz6B_96p7s8spTlHt93QVYsUgwf76YIm0xJkh0Rgm4L24XPFesWhTjlO-sI1u8xbzCJPrUAWoLP3tW6hd6OTPN5O0a4r-QD_9c0jXz8_qCg9G7b3DzbpWqO0U8go9kJ7xvqTEV0fbIjHku-A2QMXT3gLt7nER0FLSPHZLjHsq4w=w640-h512" width="640" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Recently, the National Down Syndrome Society approached me and asked me to do an Instagram Takeover in honor of National Family Caregiver Month. This organization, who does so much for the Down syndrome community, wanted to put a spotlight on caregivers. We were honored to be a part of it. That process was the catalyst to thinking about my caregiving journey. Beyond that, the feedback we received from other caregivers inspired this blog post.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Confession time: It took me two years after my mom's death and Leanne joining our household to recognize that I was not navigating my caregiver role properly and to make the necessary changes to proceed in a healthier way. It was so much easier to focus on taking care of others - particularly Leanne. This gives way to burn out. And when the caregiver is depleted, everyone who depends on that caregiver suffers. Here are some things that I found beneficial in helping me fortify myself, so I could offer better care to others: </span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEipR4Pnxj1jDy5Bi0lVmqIJITUNnqKpXE6UiiOi9KJzpFa7_YLLXg9vN6BInWSQbd8FZ547MZjGPaFRD-7A9EIYD8clqGNmDrixkFEIjSClJBP5Vovd6hCodoOZhhsXHDpQmcEtfuE8hhG0Hz1yQqw62PvsNFfIDLhThBmDCrwPAdNrE9Pkzxc2OKe8Qg=s1222" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="1222" data-original-width="1222" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEipR4Pnxj1jDy5Bi0lVmqIJITUNnqKpXE6UiiOi9KJzpFa7_YLLXg9vN6BInWSQbd8FZ547MZjGPaFRD-7A9EIYD8clqGNmDrixkFEIjSClJBP5Vovd6hCodoOZhhsXHDpQmcEtfuE8hhG0Hz1yQqw62PvsNFfIDLhThBmDCrwPAdNrE9Pkzxc2OKe8Qg=w640-h640" width="640" /></span></a></div><span style="font-family: helvetica;">1. Diet and Exercise - I became consumed with helping ensure Leanne had nutritious food per <a href="http://www.confessionsofthechromosomallyenhanced.com/2019/09/tips-for-preventing-alzheimers-in.html">Dr. Brian Skotko's recommendations</a>, as well as access to fun fitness opportunities at a special needs gym. When Leanne had her choking incident and several procedures to expand her esophagus, I took her to feeding therapy and pureed everything that I set in front of her. All the while, I wasn't the least bit concerned with my diet or fitness routine. Shame on me. When I decided that changes had to be made, I truly reaped the benefits of weight loss and feeling better by simply consuming more lean proteins and vegetables and watching my carb consumption. I spent time grocery shopping and meal prepping food for MYSELF. That didn't take away from the meals I planned for the family - it just factored myself and my well being into the process. </span><p></p><p><span style="font-family: helvetica;">2. Alcohol/Drugs - Another big component of my lifestyle overhaul involved giving up alcohol. What started as a health/weight loss effort, turned into a larger conviction once I started researching alcohol's effect on the human body. I used to truly believe that Type A, neurotic perfectionists like myself genuinely benefitted from the relaxation effects of alcohol. What I learned is that alcohol was actually increasing my anxiety and sleep disturbances. I haven't had a drink in more than a year, and at this juncture in my life, abstaining is the best decision for me. If you're curious to read more, I highly recommend the book "<a href="https://amzn.to/3E5qC9S">Alcohol Explained</a>" by William Porter. And if you're more of a podcast/YouTube person, check out <a href="https://thisnakedmind.com/anxiety-after-drinking/">Annie Grace</a>. And while I would welcome anyone to look into the benefits of reducing alcohol intake, I would also encourage people who are under great stress to discuss phamaceutical interventions with their physician. In much the same way a diabetic requires insulin to manage blood sugar, our psychological health can benefit greatly from the right prescription drug; even if it's just to help us make it through a temporary period of emotional duress. </span></p><p><span style="font-family: helvetica;">3. Outdoor time - I read books on this, too, but I'll spare you the boring details. For me, I think that being in my house is a constant reminder of the chores I have to do: laundry, cleaning, sorting through the mail, tending to the plants, organizing closets...the list never ends. When I'm in my car (which is much of my day), I'm reminded of the jam packed schedule and time constrains resulting from transporting four people to appointments and activities. But when I'm outdoors, be it on a walk, gardening, or even taking my kids to the pool, my brain can truly be free of the chorus of responsibilities and truly just enjoy relaxing in nature.<br /></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEihvLeEIde4AuwrUIwRHjRwvx68BhlgoKfwpJJ0IHPlid8t-gKCvPdIJy4mp4SjKWVwwiyw5w3RL0gI9fnNielAdE6Flo2Azyx2lQbsX64e2kiXCEztGYciPMw0YVhUdhvytfvRBWm44Xgv5RsrH9Gr7QaZbdYTDbn5K84pdvYZbKrhh_h2fkI9Z6fVwg=s1000" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="800" data-original-width="1000" height="512" src="https://blogger.googleusercontent.com/img/a/AVvXsEihvLeEIde4AuwrUIwRHjRwvx68BhlgoKfwpJJ0IHPlid8t-gKCvPdIJy4mp4SjKWVwwiyw5w3RL0gI9fnNielAdE6Flo2Azyx2lQbsX64e2kiXCEztGYciPMw0YVhUdhvytfvRBWm44Xgv5RsrH9Gr7QaZbdYTDbn5K84pdvYZbKrhh_h2fkI9Z6fVwg=w640-h512" width="640" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">4. Hobbies - I laugh as I type that word, because busy moms don't have time for hobbies! And yet, our mental health can benefit so much from unplugging with something that has nothing to do with providing care. I discovered handlettering last winter and it became a compulsion for me. I would use my kids' Crayola watercolor paints to make abstract designs on paper, and then I would handletter inspirational quotes on my paintings after my kids were in bed. I am not an artist and the vast majority of my projects were ugly disasters. But that's not the point; it was a therapeutic process for me. Likewise, I used to think that time spent reading was wasted unless I was reading nonfiction and learning something new in the process. However, over the summer, I took my kids to the library a lot. And I would pick up one or two silly fiction books to read on our pool days. Talk about a fun, mindless escape. It greatly helped me relax. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">5. Time out - it's not just for kids. When I feel myself starting to get overwhelmed and irritable, I will withdraw to my bedroom, shut the door, and enjoy a "time out." Guess what - none of my kids have ever suffered injury during one of my time outs. My house has never burned down during a time out. The world functions just fine without me for a few minutes. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"> </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Likewise, sometimes it can be overwhelming having five people talking over one another, demanding my attention all day. I am an extrovert but even I crave solitude. I have found it beneficial to wake up before the rest of my family so I can enjoy my coffee in peace and brace myself for the day ahead. I don't set an alarm; my body naturally rises early. And I truly enjoy that time of day when my house is perfectly silent.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><span style="font-family: helvetica;">6. Seek Out Sources of Inspiration and Faith - My mom's illness and death were awful. She needed me and my kids needed me and my sister needed me - I felt like I was being pulled in so many different directions and no matter who I chose to tend to, it resulted in guilt because I was neglecting someone else. The stress was so great that I wanted to crumble, but I couldn't. By listening to psychologist <a href="https://youtu.be/bb9g9mtDHZo">Dr. Jordan Peterson's lectures</a> on YouTube, I learned that voluntarily assuming a challenge resulted in a more positive emotional state than the defensive posturing system associated from fearfully bracing for catastrophe. I derievd a lot of pride from the fact that I survived that period in my life. It was awful, but I did it, and I'm stronger for having done it.</span><p></p><p><span style="font-family: helvetica;">Since my mom's passing, I have found that turning to faith can offer strength, comfort, and enlightenment. I'm fortunate to have many tremendous faith role models, and I find that the more time I spend within my religious community, the more I receive comfort in God's message. At a recent faith formation gathering, another parishoner shared a story about how he lost his mother at a very young age. In listening to him tell his story, I felt a whole new level of healing in my grief journey. This year, I'd like to grow in faith even more.</span></p><p><span style="font-family: helvetica;">7. Help Someone Else - This may sound counterintuitive that you need to seek out someone else to help when you're already drained from caregiving, but hear me out...Sometimes emotionally extracting myself from my own situation and investing in acts of service towards others really reframes my mindset. In the <a href="https://www.loyolapress.com/catholic-resources/prayer/traditional-catholic-prayers/saints-prayers/peace-prayer-of-saint-francis/">Prayer of St. Francis</a>, it says "For it is in giving that we receive." And sometimes that intrinsic boost that comes from acting in service to another person is just the tonic required to transition from feeling depleted to feeling fulfilled. </span></p><p><span style="font-family: helvetica;">8. Ask for help - This particular point generated so much feedback from caregivers on Instagram. My experience has been that when things become overwhelming, I know I need to move heaven and earth to build a support system. We have never lived in the same state as our family, and therefore Travis and I have always had to find outside care providers. During the pandemic, Leanne's activities were obliterated and she was stuck at home day in and day out. Her mental health decline became very apparent. She was withdrawn, agitated, and lost. We tried virtual talk therapy and Leanne's communication challenges made it ineffective. My breaking point came over the summer when Travis was out of town (when one element is out of place, Leanne usually struggles) and her negative attention-seeking behaviors were keeping everyone awake at night and had me really questioning how much more I could take. I ended up going on NextDoor, care.com and even contacting the church to try and find someone who could help. Leanne needed to get out of the house. She needed activities and attention beyond what I could provide. My kids needed a mother who wasn't sleep deprived and short fused. And I needed a break, too. </span></p><p><span style="font-family: helvetica;">It took awhile, and it cost some money, but we finally found a care provider who could take Leanne out of the house for 18 hours a week and transport her to community engagements including Special Olympics, fitness, volunteering, and other recreational activities. This has made an enormous difference for Leanne and for myself. </span></p><p><span style="font-family: helvetica;">Many parents are hesitant to trust anyone else to provide care for their children, and I understand that. However, as the dependent individual reaches adulthood, we have to learn to let go. Leanne is in the community for work and I cannot supervise her there. She relies on special needs transportation services and I cannot supervise her there. If she attended a day program, I would not be able to hire and supervise every staff member. And if she lived in a group home - forget it! I have found that it is worth the time and effort to search for the right care provider, and to train that person, for the peace of mind that comes from having a break from the 24/7 demands of care. Furthermore, your loved one's life may be greatly enhanced by forming a relationship with someone other than yourself. </span></p><p><span style="font-family: helvetica;">If you have a friend or family member who is a caregiver, please volunteer - insist - on picking up (or staying with) the individual who needs care so the caregiver can have a break. Some individuals thrive on consistency so maybe you could commit to a regular weekend schedule - a 2 hour outing every Sunday. I assure you that this is one of the most beneficial things you can do to show your support to a caregiver. </span></p><p></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEj3qPzUFtgjCdcLAI4vE97bsxPh4JGANB5YhexWSF9iabApjfExz1HCQlnIhUeBWV3UmHVGJp25r3fWheGb0n3eKyaP8x_ErZqzMG1aOESSbySZbZ51KZKpXSQh_scJDwINfqOr4DfKv-NdwTNqCCoRDpUfYlncakYw0_geDr2b1uPKely01qiwS6DM-Q=s1500" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://blogger.googleusercontent.com/img/a/AVvXsEj3qPzUFtgjCdcLAI4vE97bsxPh4JGANB5YhexWSF9iabApjfExz1HCQlnIhUeBWV3UmHVGJp25r3fWheGb0n3eKyaP8x_ErZqzMG1aOESSbySZbZ51KZKpXSQh_scJDwINfqOr4DfKv-NdwTNqCCoRDpUfYlncakYw0_geDr2b1uPKely01qiwS6DM-Q=w426-h640" width="426" /></span></a></div><p></p><p><span style="font-family: helvetica;">9. Build a Tribe - There is an immense relief in venting to someone who "gets it." In recent years, I watched a relative become a caretaker to his wife when she was diagnosed with dementia. He found an Alzheimer's Support Group and he attended the meetings faithfully. Now that she's gone, he attends a grief support group. Likewise, I have made numerous friends who have children and siblings with Down syndrome. Some of my closest "Ds Community Friends" have been found thanks to social media. It's remarkable how many commonalities unite us, even though we're all over the globe. There's something reassuring in being able to exchange stories and ideas with people who can relate. </span></p><p><span style="font-family: helvetica;">10. Humor - Anyone who has followed our journey for awhile is aware that my number one coping mechanism is humor. God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the sense of humor to laugh at this nuthouse I live in. My mom used to call me frequently with funny Leanne stories. Now, I document the #LeanneHollywood stories on Instagram. If nothing else, we have an endless supply of inside jokes beccause there's always something to giggle about around here. </span></p><div class="separator" style="clear: both; text-align: center;"><p></p><div class="separator" style="clear: both;"><span style="font-family: helvetica;"><br /></span></div></div><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiv7J1Ah1HXJQ_gkHGUUQN2sNfCWjYxmuT67fPstfs8pmVG54GgLTeJwrLa9DY1NMKhUsl9-bIoi2cusPsO2kVacucZl1Nn3AGvxqUhwD-bsI9VBMu41bQeNIZ23sqDE5sSwJ3VIkwTVfA0XJLGtP9I5FTzh3TeFwH-SMqOVLMhKwGLM0uI-xHVvw5Faw=s1000" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="800" data-original-width="1000" height="512" src="https://blogger.googleusercontent.com/img/a/AVvXsEiv7J1Ah1HXJQ_gkHGUUQN2sNfCWjYxmuT67fPstfs8pmVG54GgLTeJwrLa9DY1NMKhUsl9-bIoi2cusPsO2kVacucZl1Nn3AGvxqUhwD-bsI9VBMu41bQeNIZ23sqDE5sSwJ3VIkwTVfA0XJLGtP9I5FTzh3TeFwH-SMqOVLMhKwGLM0uI-xHVvw5Faw=w640-h512" width="640" /></span></a></div><span style="font-family: helvetica;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><span style="font-family: helvetica;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><br /><p></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com4tag:blogger.com,1999:blog-1369867321501732562.post-69344867221173400072021-05-08T09:34:00.001-07:002021-05-08T09:34:17.521-07:00Down Syndrome and Preparing for Puberty<div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">I have a Type A personality. I like information; the more, the better. I like to be prepared. Sometimes I overprepare. I can be a little neurotic. It's part of my charm. </span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-FXOxA_5ms6Y/YJCtpm8bVqI/AAAAAAAANfk/GmkSX8gAojwLQQ9dEzx8UXCqMWchYBq-gCLcBGAsYHQ/s2048/Able%2BBut%2BNot%2BAlways%2BWilling.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="640" src="https://1.bp.blogspot.com/-FXOxA_5ms6Y/YJCtpm8bVqI/AAAAAAAANfk/GmkSX8gAojwLQQ9dEzx8UXCqMWchYBq-gCLcBGAsYHQ/w640-h640/Able%2BBut%2BNot%2BAlways%2BWilling.jpg" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Our oldest child just turned eleven. Guess what's around the corner: puberty. I would be lying if I said that this notion doesn't give me anxiety. What's a neurotic, Type A mother to do? Well, I must take the bull by the horns and tackle this head on. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">And as I always have, I'm happy to share my experiences as both a sibling and a parent of individuals with Down syndrome (within reason) in an attempt to benefit the whole community. Because, despite all of the pitfalls of the Internet, it does allow for a valuable exchange of information. And this blog is here to offer real life experience that serves as a helpful addendum to any clinical information you can gather from various books and websites.</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Step 1: Gather Information - Have no fear: I have a book! It's a pretty cool and comprehensive book, too. It's written specifically for individuals with intellectual disabilities in simple and direct language with lots of graphics and photos. It's called <a href="https://amzn.to/3uiNIpx">"The Girls' Guide to Growing Up by Terri Couwenhoven.</a></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://amzn.to/3uiNIpx" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1463" height="400" src="https://1.bp.blogspot.com/-TMG9szcm96o/YJCwVaSWSUI/AAAAAAAANfw/nlZmaDTsWiI8HxBfEeJqWTdM-ja3jXodQCLcBGAsYHQ/w286-h400/Girls%2BGuide.jpg" width="286" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-OrsaKwNU9CM/YJCxygPNPmI/AAAAAAAANf4/T0HQ-dzgAw8wGkQM80jkTjphWMo2UvrGgCLcBGAsYHQ/s2048/Table%2Bof%2BContents.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="640" src="https://1.bp.blogspot.com/-OrsaKwNU9CM/YJCxygPNPmI/AAAAAAAANf4/T0HQ-dzgAw8wGkQM80jkTjphWMo2UvrGgCLcBGAsYHQ/w640-h640/Table%2Bof%2BContents.JPG" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;">They have one for boys, too. You can find it <a href="https://amzn.to/2RqFwVm">HERE</a>. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Step 2: Write a Social Story</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Last night in the bathtub, Lydia (also known as "Biddy") said to me in an urgent whisper-yell "Mom! Look - Josie is becoming a woman!" while frantically gesturing to her chest. You see, Biddy was excited, but she was trying to be discreet. We knew this day would come. And if my six year-old noticed it, it's about time we face it. So today, I stopped into Old Navy and I purchased some<a href="https://oldnavy.gap.com/browse/product.do?pid=136515022&vid=1&tid=onpl000000&kwid=1&ap=7&gclid=Cj0KCQjwvr6EBhDOARIsAPpqUPFdT4nMwoUSh_Pn2toeIkSK4zVoT1kU4Rotn1Fa0jxAkvS79QM-AzsaAhz-EALw_wcB&gclsrc=aw.ds#pdp-page-content"> cami training bras.</a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">What I did next should come as no surprise: I drafted a social story. <a href="http://www.confessionsofthechromosomallyenhanced.com/2019/11/5-tips-for-writing-effective-social.html">It's what I do! </a> Here's where my lifetime of experience with special needs comes into play...I've learned, time and again, that the more taboo a subject, the more tempting it is to discuss to whoever will listen. <a href="http://www.confessionsofthechromosomallyenhanced.com/2011/06/aunt-leanne-and-never-ending-birthday.html">Take this classic story from Aunt Leanne</a> (I have no idea what happened to the photos on this old blog post!). I have so many stories involving Leanne embarrassing my mom and I delighted in these stories so much more before I assumed the role of the one who would field the embarrassment.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Every family has a different threshold for modesty and different ideas about propriety and that's okay. For me, I want my children to feel comfortable coming to me with questions and concerns so I try to be receptive and nonchalant while gently steering our family's values into the discussion. I remember when Merryn put me on the spot about the birds and the bees and I froze and changed the subject quickly! You see, she was really young. But she's always been advanced and inquisitive beyond her years. Mama Hop shamed me when I told her and insisted that the next time Merryn brought it up, that I tell her everything. And I did! </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Josie is different. Because of her intellectual delays, Josie needs a very simple explanation, and many, many repetitions to learn a concept. But the other tricky part about Josie (and many individuals with special needs) is that she doesn't have the same social instincts nor inhibitions that her sisters do. So if she learns about something that's taboo, she wants to say it as much as possible to get a BIG reaction out of people. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Pop Quiz: What do we do with attention seeking behaviors?</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">You named it: We ignore. I tell Josie where (in the bathroom) and with whom (parents or a trusted adult) she can discuss certain things and when she brings it up outside of those parameters, I remind her once, and ignore the rest. Without a reaction, the taboo words lose their luster. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">But it's important that we don't avoid discussing these inevitable things for fear of embarrassment. We need to prepare our kids and we need to allow for enough time and repetition for them to learn how to successfully take care of their bodies. While I find the aforementioned book incredibly helpful for guiding these conversations, I decided to break each topic down and address them with a dedicated social story for each one, starting with...drumroll please...bras. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Ugh! Cringe, I know. But we can do this! And it's important that we do this. Because teaching our kids to take care of their bodies, hygiene, and sexual urges is a critical part of health and wellness, peer acceptance, and social integration.</div></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://drive.google.com/file/d/1Pn8h2FzzVjl62mRMyAC9i764NPuk9zbf/view?usp=sharing" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="1275" data-original-width="1650" height="494" src="https://1.bp.blogspot.com/-pcjqd0bz0OE/YJCtLUBMvEI/AAAAAAAANfc/h5Ad4Sob1dE0ujVeLrqPHSRu2MPwdrPaQCLcBGAsYHQ/w640-h494/Josie%2Bgets%2Ba%2Bbra.jpg" width="640" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><a href="https://drive.google.com/file/d/1Pn8h2FzzVjl62mRMyAC9i764NPuk9zbf/view?usp=sharing">Click here for a free PDF</a> of the whole social story</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Here is a clip of Josie's first read-through:</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div>
<div style="text-align: center;"><iframe frameborder="0" height="270" src="https://youtube.com/embed/6YAEUxYwBgc" width="480"></iframe></div><div style="text-align: center;"><span style="font-family: helvetica;">Notice how she hung on to that "we don't talk about it." As she self-talked herself to sleep, the bulk of the monologue was about "private" and "we don't talk about it." I suspect there will be plenty of discussion about it whether I like it or not. LOL! Such is life with our chromosomally enhanced friends. It's never boring! </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">Disclaimer: While I have resolved to not only educate myself but share my findings via this forum, some topics are difficult to share within the confines of family privacy, internet safety, and keeping personal information personal. That's why I offer the book recommendations along with <a href="http://www.confessionsofthechromosomallyenhanced.com/2019/11/5-tips-for-writing-effective-social.html">advice for how you can draft your own social story</a>. I am not a professional; just a mom. Please direct any specific inquiries about your child to your physician or a <a href="https://www.bacb.com/">behavior analyst</a> who can aid in teaching individuals with special needs how to take care of their bodies.</span></div>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com4tag:blogger.com,1999:blog-1369867321501732562.post-58806439435182855532021-05-05T19:37:00.002-07:002021-05-05T19:37:55.582-07:00Social Media : Good or Evil?<p style="text-align: center;"><span style="font-family: helvetica;">The other night, I stayed up until 1am writing a post on this topic and I decided against posting it because it just came pouring out, stream of consciousness style, and it got a little too tangy...and verbose. But I promised myself that I would address the issue of social media on a longer format which leads us to Confessions of the Chromosomally Enhanced. Welcome back! </span></p><p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-8qz4TSwAQEc/YJNOr8yZlgI/AAAAAAAANgI/8FYHo1MU_AMbw4ySem1Tfn16DEkYXVxfwCLcBGAsYHQ/s1000/Easter%2Bwatermark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="670" data-original-width="1000" height="428" src="https://1.bp.blogspot.com/-8qz4TSwAQEc/YJNOr8yZlgI/AAAAAAAANgI/8FYHo1MU_AMbw4ySem1Tfn16DEkYXVxfwCLcBGAsYHQ/w640-h428/Easter%2Bwatermark.jpg" width="640" /></a></div><span style="font-family: helvetica;"><br /></span><p></p><p style="text-align: center;"><span style="font-family: helvetica;">I watched the Netflix documentary, "The Social Dilemma" (three times). It warns about the dark side of social media and the detrimental impacts social media can have on our kids and on our society. Ironically, I posted about it on Instagram and encouraged our followers to go check it out:</span></p><p></p>
<div style="text-align: center;"><span style="font-family: helvetica;"><iframe allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/uaaC57tcci0" title="YouTube video player" width="560"></iframe></span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">"The Social Dilemma" underscores the negative side of social media:</span></div><div style="text-align: center;"><i><span style="font-family: helvetica;"><br /></span></i></div><div style="text-align: center;"><i><span style="font-family: helvetica;">"Technology is at the root of addiction, polarization, radicalization, outrage-ificiation, vanity-ification, the entire thing."</span></i></div><div style="text-align: right;"><span style="font-family: helvetica;"><span> </span><span> </span><span> </span><span> </span><span> <span> </span><span> </span><span> </span><span> -Tristan Harris, Former Design ethicist at Google</span></span><br /></span></div><div style="text-align: right;"><span><span><span style="font-family: helvetica;"><br /></span></span></span></div><div style="text-align: center;"><span><span><span style="font-family: helvetica;">The documentary highlights technology's impact on children, and it provides some disturbing statistics about the rise in self-injurious behavior and suicide since the introduction of social media. As a parent of young girls, this resonated with me. The most compelling part of the documentary, for me, was the very end (during the credits), when the creators of this technology unequivocally stated that they do not allow their own children to utilize it. </span></span></span></div><div style="text-align: center;"><span><span><span style="font-family: helvetica;"><br /></span></span></span></div><div style="text-align: center;"><span><span><span style="font-family: helvetica;">Let that sink in.</span></span></span></div><div style="text-align: center;"><span><span><span style="font-family: helvetica;"><br /></span></span></span></div><div style="text-align: center;"><span><span><i><span style="font-family: helvetica;">"Social Media digs deeper and deeper down into the brain stem to take over kids' sense of self worth and identity.</span></i></span></span></div><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><div style="text-align: justify;"><span style="font-family: helvetica; text-align: right;">-Tristan Harris, Former Design ethicist at Google</span></div></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">Children and teens tend to make decisions based on emotion and not rational thought, thanks to a pre-frontal cortex that hasn't fully developed yet (<a href="https://www.stanfordchildrens.org/en/topic/default?id=understanding-the-teen-brain-1-3051">source</a>). Consequently, social media poses many risks due to children's limited capacity for self-regulation, their susceptibility to peer pressure, and their failure to understand the long term impacts of one's digital footprint. But can we admit that even as adults, the dark side of social media manipulates our perceptions at times, too? </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">Have you ever fallen into the trap of seeing the perfect housewife on Instagram and wondering what she knows that you don't? You know - the thin, stylishly-dressed, fully made-up woman with hair that would make Jennifer Aniston green with envy? She has an expansive, gorgeously-decorated, perpetually-tidy home where she prepares nutritious meals from scratch daily and feeds them to her cherubic children who never test her patience with fighting and defiance? You know the one. Actually, there are thousands out there if you look. </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">But hopefully you know it's not reality. We all have our problems. As a mom/sister blogger, I can see both sides of this coin. I can testify that balancing an honest portrayal while not defaming your loved ones is a fine line to walk. I'm glad my mom didn't have social media when I was growing up - I would have been mortified! Heck, I'm glad I didn't have social media growing up because I would undoubtedly CRINGE at 13 year-old me flailing around in Tik Tok videos. Can you imagine the horror?! </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">So with that in mind, I try really hard to never disparage anyone in my family. The unintended side effect of that is a perception that you only see the good parts. Let me tell you right now: no one is perfect. My house gets messy, my kids fight, my sister drives me nuts, and I lose my mind now and again. I just generally don't stop and film these things. Do you? </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">What confounds me, and maybe testifies to my age which is far closer to "Get off of my lawn" than it is to Tik Tok dance trends, is the sheer lack of <b>boundaries</b> on social media. Oversharing and demanding personal information from others seems perfectly acceptable as long as it's behind a screen. If you wouldn't approach the stranger behind you in line at the grocery store and say it, is it acceptable to say it to someone you've never met on the Internet? </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">I've shied away from Facebook, but I appreciate Instagram as a quick and easy way to store memories. Our account is public. We're very fortunate to have a warm and supportive group of virtual friends who encourage us and keep things 99.9% positive on Instagram. But I'd be lying to you if I said that I've never been tempted to delete the account and disappear into anonymity thanks to the other 0.1% During the past year, I found it beneficial to moderate my media intake (social and otherwise) so I could get some perspective without all the "noise."</span></div><div style="text-align: center;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-wIGK69KsXKU/YJNVGJ3M2jI/AAAAAAAANgU/4DCOeShs_-0ijrKSyqXBW43Fv1LQTOfMACLcBGAsYHQ/s2048/Leanne%2Band%2BJosie.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1365" data-original-width="2048" height="426" src="https://1.bp.blogspot.com/-wIGK69KsXKU/YJNVGJ3M2jI/AAAAAAAANgU/4DCOeShs_-0ijrKSyqXBW43Fv1LQTOfMACLcBGAsYHQ/w640-h426/Leanne%2Band%2BJosie.jpg" width="640" /></a></div><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">When fellow special needs advocates succumb to the negativity bias and tell me they want to throw in the towel, I remind them of the impact we can have just by posting photos and captions. The positive messages I have received from people throughout the years have been so moving. I feel grateful for a platform that allows us to upload snippets of our lives so that others can get a non-clinical view of life with Down syndrome and how it truly impacts a family. Blogger and Instagram have been beneficial in allowing us to advocate and share our journey, in the hopes of creating a more positive perception of Down syndrome. Ideally, Josie and Leanne will experience more acceptance in the future because our family (along with many others) are allowing people a chance to get to virtually "know" someone with Down syndrome, and bias that stems from ignorance can be alleviated and replaced by a genuine appreciation for the joy Leanne and Josie bring to our lives. </span></div><div style="text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div style="text-align: center;"><span style="font-family: helvetica;">And that's why I'm here. </span></div>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com2tag:blogger.com,1999:blog-1369867321501732562.post-52989212136033209182021-05-01T20:53:00.001-07:002021-05-01T20:53:45.595-07:00Top Down Syndrome Blogs Award<p></p><div style="text-align: center;"> <span style="font-family: helvetica;"><span style="text-align: center;">We have been honored as one of Twinkl's "</span><a href="https://www.twinkl.com/blog/top-down-syndrome-blogs" style="text-align: center;">Top Down Syndrome Blogs</a><span style="text-align: center;">" for 2021 and we are elated! Twinkl is an educational resource website and you know that we're big on educational resources around here. In fact, I already had a Twinkl membership and I have used Twinkl's worksheets to teach various concepts to my children. That made this recognition even more meaningful for us. </span></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-5Dp2vIJeRAk/YI4fVFls1nI/AAAAAAAANfM/CcT36j6d_zg-uMj0GmNckUqQ9R0TUTyEgCLcBGAsYHQ/s1000/Josie%2Band%2BLeanne%2Bwatermark%2BB%2526W.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-5Dp2vIJeRAk/YI4fVFls1nI/AAAAAAAANfM/CcT36j6d_zg-uMj0GmNckUqQ9R0TUTyEgCLcBGAsYHQ/w640-h456/Josie%2Band%2BLeanne%2Bwatermark%2BB%2526W.jpg" width="640" /></span></a></div><div style="text-align: center;"><span style="font-family: helvetica;">Confessions of the Chromosomally Enhanced doesn't get updated as frequently as we'd like, but we are still so proud of the eleven years of stories, experience, lessons, and resources that we've shared. Thank you to everyone who has joined us on this learning journey. And thank you to Declan Lockheed and the Twinkl family for including special needs in your outreach, and for compiling this list to help connect all of us who are trying to pave a brighter future for our loved ones with Down syndrome.</span></div><p></p><p><br /></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com1tag:blogger.com,1999:blog-1369867321501732562.post-51548046132962003352021-03-21T11:35:00.000-07:002021-03-21T11:35:38.951-07:00World Down Syndrome Day 2021<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-hkcEHjMchkY/YFeLFp1VWAI/AAAAAAAANbo/dgUEOcmH_L8vRUHQYI7cxk1ls8vRrs6cwCLcBGAsYHQ/s1000/Josie%2Band%2BLeanne%2Bswing%2Bwatermark%2B%2528small%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-hkcEHjMchkY/YFeLFp1VWAI/AAAAAAAANbo/dgUEOcmH_L8vRUHQYI7cxk1ls8vRrs6cwCLcBGAsYHQ/w640-h426/Josie%2Band%2BLeanne%2Bswing%2Bwatermark%2B%2528small%2529.jpg" width="640" /></span></a></div><span style="font-family: helvetica;"><div style="text-align: center;"><br /></div><div style="text-align: center;"> March 21st is World Down Syndrome Day. Down syndrome is characterized by three copies of the 21st chromosome. 3/21 - get it? </div></span><p></p><p style="text-align: center;"><span style="font-family: helvetica;">I was welcomed into the world by a big sister with Down syndrome. I credit her as the single most influential person in my life. She had such a positive influence on me, that ten (almost 11!) years ago, my husband and I decided to start our family by adopting a baby with Down syndrome. We now all live together under one roof and it is a blessing to see these two interact daily. They enrich our lives with their authenticity, candor, humor, and an abundant outpouring of love. </span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica; margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-7k3OfYTAOm8/YFePZtRRFEI/AAAAAAAANbw/fHJjYcCSl7ojf61kvG3_yqetK1P31miLgCLcBGAsYHQ/s1000/Leanne%2BEucharistic%2BMinister.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="750" data-original-width="1000" height="480" src="https://1.bp.blogspot.com/-7k3OfYTAOm8/YFePZtRRFEI/AAAAAAAANbw/fHJjYcCSl7ojf61kvG3_yqetK1P31miLgCLcBGAsYHQ/w640-h480/Leanne%2BEucharistic%2BMinister.jpg" width="640" /></a></span></div><p style="text-align: center;"><span style="font-family: helvetica;">Today was Leanne's first day back in her Eucharistic Minister role at church. She's now fully vaccinated and ready to serve God and her fellow parishioners. It was the perfect way to start our World Down Syndrome Day. I know our mom is watching her from heaven with so much pride. </span></p><p style="text-align: center;"><span style="font-family: helvetica;">I wish everyone in the world were lucky enough to have an individual with Down syndrome in their lives. It's part of the reason we share our lives on the blog and on Instagram. Because knowing Josie and Leanne offers a beautiful reason to celebrate this holiday. </span></p><p style="text-align: center;"><span style="font-family: helvetica;">Happy World Down Syndrome Day!</span></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com2tag:blogger.com,1999:blog-1369867321501732562.post-91742847263780420142020-12-25T10:08:00.004-08:002020-12-25T10:08:36.203-08:00Merry Christmas 2020<p></p><div style="text-align: center;"><span style="font-family: helvetica;"> Was it the best year ever? Certainly not. But there's still a lot of love to celebrate. </span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-ladXWQPgmts/X-Yp_EON2-I/AAAAAAAANVU/yZeivK9K4PIWQnKtUDM_eYTopCFyanNYgCLcBGAsYHQ/s1200/Group%2BHug%2BWatermark%2Bsmall.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="1200" height="426" src="https://1.bp.blogspot.com/-ladXWQPgmts/X-Yp_EON2-I/AAAAAAAANVU/yZeivK9K4PIWQnKtUDM_eYTopCFyanNYgCLcBGAsYHQ/w640-h426/Group%2BHug%2BWatermark%2Bsmall.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-z7I_dEH04Wc/X-Yp_L1hGdI/AAAAAAAANVQ/zJkPk3wCEoYAlOvwwCbG6b_TWKTFHUrZQCLcBGAsYHQ/s1200/Biddy%2Bornament%2Bsquare%2Bwatermark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="640" src="https://1.bp.blogspot.com/-z7I_dEH04Wc/X-Yp_L1hGdI/AAAAAAAANVQ/zJkPk3wCEoYAlOvwwCbG6b_TWKTFHUrZQCLcBGAsYHQ/w640-h640/Biddy%2Bornament%2Bsquare%2Bwatermark.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-KeZNoj1_iZE/X-Yp_iQSGTI/AAAAAAAANVc/4yACXyeAdyAJhvZ3VjK33Nmc2hnidR9LwCLcBGAsYHQ/s1200/Merryn%2Bornament%2Bwatermark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="640" src="https://1.bp.blogspot.com/-KeZNoj1_iZE/X-Yp_iQSGTI/AAAAAAAANVc/4yACXyeAdyAJhvZ3VjK33Nmc2hnidR9LwCLcBGAsYHQ/w640-h640/Merryn%2Bornament%2Bwatermark.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-c_bNKtxu_qQ/X-Yp_PbpZOI/AAAAAAAANVM/_clYR-eVhBwZMIZcknf3CyE3KJWcrfpuQCLcBGAsYHQ/s1200/Josie%2Bornaments%2Bsquare%2Bwatermark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="640" src="https://1.bp.blogspot.com/-c_bNKtxu_qQ/X-Yp_PbpZOI/AAAAAAAANVM/_clYR-eVhBwZMIZcknf3CyE3KJWcrfpuQCLcBGAsYHQ/w640-h640/Josie%2Bornaments%2Bsquare%2Bwatermark.jpg" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-f6qDsYxfdzY/X-Yp_TTg5CI/AAAAAAAANVY/Vx-6IewEkiY37JY_cmHTiiDsyOSEdX8kwCLcBGAsYHQ/s1200/Leanne%2Bornament%2Bsquare%2Bwatermark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="640" src="https://1.bp.blogspot.com/-f6qDsYxfdzY/X-Yp_TTg5CI/AAAAAAAANVY/Vx-6IewEkiY37JY_cmHTiiDsyOSEdX8kwCLcBGAsYHQ/w640-h640/Leanne%2Bornament%2Bsquare%2Bwatermark.jpg" width="640" /></a></div><span style="font-family: helvetica; text-align: center;"><div style="text-align: center;">Merry Christmas!</div></span><p></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com1tag:blogger.com,1999:blog-1369867321501732562.post-71533004618843973162020-12-19T05:15:00.001-08:002020-12-19T05:15:43.608-08:002020 Christmas Card Reveal <p style="text-align: center;"> <span style="font-family: helvetica;">As 2020 winds to a close (thank HEAVENS!), and we reflect back on the unprecedented times that we experienced, it's absolutely overwhelming. It's the kind of thing we'll undoubtedly tell our grandkids about as they gaze at us, eyes wide with curiosity and bewilderment. </span></p><p style="text-align: center;"><span style="font-family: helvetica;">I remember the initial terror - my neighbor bringing me an item, wrapped in a Clorox wipe, and setting it down 10 feet away from me because neither party was sure that the other wasn't contaminated with a lethal virus. Fearful parents warning small children not to get close to their friends because it may make us sick. Blasting out texts to neighbors that "The Walmart on Lincoln Ave. has toilet paper! Hurry!" Oh and that hand sanitizer that smelled like cheap tequila mixed with vinegar that we were eagerly dousing our hands in because GERMS!</span></p><p style="text-align: center;"><span style="font-family: helvetica;">It's been an emotional roller coaster with no end in sight. One minute, you feel like you're facing doomsday...then you relax a bit...then, you hear of a Covid case taking the life of someone your age or younger and the panic starts all over again. We cancelled vacations and birthday parties (I had a GOOD one planned for Josie), postponed visits with loved ones, and waved at Santa from the safety of our enclosed car. We worked from home, attempted to homeschool, and took walks but did not play on park equipment. I remember a guy offering to take my cart from me after I unloaded my groceries into my trunk, and I felt equal parts flabbergasted and flattered "He doesn't think I'm a contaminated germ factory?! He wants to touch something I've touched without bleaching it down first?! What in the world?!?!' It would behoove me to write down some of these moments that stand out in my mind as I hope they become a piece of history - something that we can shove out of our minds until our grandchildren ask us to reminisce. </span></p><p style="text-align: center;"><span style="font-family: helvetica;">This year, even more than in years past, I felt ample reason to drop holiday cards from the priority list. Honestly, 2020 has became an adequate excuse to dodge just about any activity you may have otherwise felt obligated to partake in, right, Josie? </span></p><p style="text-align: center;"><span style="font-family: helvetica;"><iframe frameborder="0" height="360" src="https://youtube.com/embed/3sgVHLz1bu0" style="background-image: url(https://i.ytimg.com/vi/3sgVHLz1bu0/hqdefault.jpg);" width="480"></iframe></span></p><p style="text-align: center;"><span style="font-family: helvetica;">Furthermore, in perfect accordance with the Murphy's Law that is 2020, my expensive camera lens rolled off the table and broke. As if the cost of the repair wasn't enough punishment for me, "Covid delays" mean that it won't be returned for weeks...certainly not in time for Christmas cards. So that's it - I gave up.</span></p><p style="text-align: center;"><span style="font-family: helvetica;">But then, I considered how everyone feels especially isolated and lonely this year. If there ever was a year to try and send a little cheer in the form of a cute holiday card, it's 2020; even if the image was lacking the vibrant and crisp touch of the DSLR camera. Then, Merryn politely implored me to maintain this tradition with the most eager anticipation, assuring me that if I said "yes," she would handle the bulk mailing all on her own. </span></p><p style="text-align: center;"><span style="font-family: helvetica;">As with years past, it was important to try and add elements of creativity and humor into the card (See years past <a href="http://www.confessionsofthechromosomallyenhanced.com/2014/12/the-top-10-reasons-why-were-boycotting.html">here</a>, <a href="http://www.confessionsofthechromosomallyenhanced.com/2015/12/2015-christmas-card-reveal.html">here</a>, and <a href="http://www.confessionsofthechromosomallyenhanced.com/2016/12/2016-christmas-card-reveal.html">here</a>). And because 2020 is so anomalous, and because eliciting smiles is so desperately needed this year, it was important to commemorate this somber year with comedy and levity. Remarkably, it came together with ease and despite the subpar cell phone-quality photo, it turned out to be one of the most well-received cards we've done. Without further ado, the 2020 Christmas card reveal:</span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-tasuvvMDz2Y/X936GZ7ES8I/AAAAAAAANUU/rRwAXQ1_nwkDH06w3m3e_vQ3TTELDeQbgCLcBGAsYHQ/s2048/2020_ChristmasCard_Front%2B-%2Bno%2Bname%2Bwatermark.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="2048" data-original-width="1450" height="640" src="https://1.bp.blogspot.com/-tasuvvMDz2Y/X936GZ7ES8I/AAAAAAAANUU/rRwAXQ1_nwkDH06w3m3e_vQ3TTELDeQbgCLcBGAsYHQ/w454-h640/2020_ChristmasCard_Front%2B-%2Bno%2Bname%2Bwatermark.jpg" width="454" /></span></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-kKYqVBhDoG4/X936VMYMw1I/AAAAAAAANUY/WaJH7tuj84gCfivJlnRsthNMDC-7KQvhACLcBGAsYHQ/s2048/2020_ChristmasCard_Back.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="2048" data-original-width="1383" height="640" src="https://1.bp.blogspot.com/-kKYqVBhDoG4/X936VMYMw1I/AAAAAAAANUY/WaJH7tuj84gCfivJlnRsthNMDC-7KQvhACLcBGAsYHQ/w432-h640/2020_ChristmasCard_Back.jpg" width="432" /></span></a></div><span style="font-family: helvetica;"><div style="text-align: center;"><br /></div></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">And just like that, I had a tiny grief trigger, realizing that my mom wouldn't read this post (or maybe she will - who knows?). She would have loved this card. She always <strike>pressured </strike> *ahem* enthusiastically encouraged us in the pursuit of the perfect holiday card. She would have approved. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: helvetica;">Wishing you a happy and healthy holiday season and extra prosperity in the new year!</span></div><span style="font-family: helvetica;"><div style="text-align: center;"><br /></div></span><p style="text-align: center;"><br /></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com2tag:blogger.com,1999:blog-1369867321501732562.post-72773664277897371962020-12-06T05:41:00.005-08:002020-12-06T05:45:27.534-08:00December Update <p style="text-align: center;"><span style="font-family: helvetica;"> The other day, I was in Target picking up some essentials and I walked past an older woman talking on her phone. She had it on speaker and she told the female voice on the other end of the line "I love you" before she hung up. Just like that, grief sucker punched me in the gut and I had to duck behind a display and collect myself. Two years later, I'm reminded of the void left by my mom. It's those little things that don't even faze you at the time - a brief phone call ending in a declaration of love, as every phone call did - they leave a gaping hole.</span></p><p style="text-align: center;"><span style="font-family: helvetica;">Isn't that the theme of 2020? Everything we took for granted in the past is now poignantly missed. <span style="margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-dpabkh7ChxI/X8zMeq1oraI/AAAAAAAANSA/Vl1Bxjis7uQh8uW2TrPq9qU4L-m99-zhgCLcBGAsYHQ/s1200/Group%2BPumpkins%2BWatermark.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="1200" height="426" src="https://1.bp.blogspot.com/-dpabkh7ChxI/X8zMeq1oraI/AAAAAAAANSA/Vl1Bxjis7uQh8uW2TrPq9qU4L-m99-zhgCLcBGAsYHQ/w640-h426/Group%2BPumpkins%2BWatermark.jpg" width="640" /></a></span></span></p><p style="text-align: center;"><span style="font-family: helvetica;"><span>An email arrived in my inbox from one of mom's friends; she was seeking an update. The update is that we're doing quite well, all things considered. May was quite traumatic with Leanne's </span><a href="http://www.confessionsofthechromosomallyenhanced.com/2020/05/the-most-terrifying-moment.html">choking incident,</a><span> and we've had many subsequent appointments, tests, procedures, and feeding therapy to try and get to the root cause of the issue and to improve matters. After Leanne's recent esophageal manometry showed very little muscle motility and pressure in her lower esophagus, and given the backdrop of her esophageal atresia surgery during infancy, the dilations, scar tissue, and imaging they have to date, the GI doctor made a referral to Mayo. In the meantime, Leanne still struggles to eat slowly and carefully so we're erring on the side of softer foods to keep her safe. A consequence of her condition is weight loss and we're actively trying to boost her calories to prevent further weight loss. </span><span style="margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-ZYyxyHIXcOw/X8zchL1c__I/AAAAAAAANTA/Rbv6BZFQ9OsSMDcK_9_jMLYhS02sfncxACLcBGAsYHQ/s1200/Leanne.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="1200" height="426" src="https://1.bp.blogspot.com/-ZYyxyHIXcOw/X8zchL1c__I/AAAAAAAANTA/Rbv6BZFQ9OsSMDcK_9_jMLYhS02sfncxACLcBGAsYHQ/w640-h426/Leanne.jpg" width="640" /></a></span></span></p><p style="text-align: center;"><span style="font-family: helvetica;"><span>While the aforementioned circumstances have been stressful, Leanne continues to demonstrate an enviable resiliency! She maintains a positive outlook and she rejoices in the smallest victories. Her daily commitment to faith and prayer are inspiring. She prays for an end to Coronavirus. She is desperate to return to her daily activities of work, volunteering, and socializing. </span><span style="margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-vye3bo6KidQ/X8zMu1ANEaI/AAAAAAAANSY/1tB_vaw95y0Iy7YolGF1FOgDCy28j5-9gCLcBGAsYHQ/s1200/Biddy.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="857" data-original-width="1200" height="458" src="https://1.bp.blogspot.com/-vye3bo6KidQ/X8zMu1ANEaI/AAAAAAAANSY/1tB_vaw95y0Iy7YolGF1FOgDCy28j5-9gCLcBGAsYHQ/w640-h458/Biddy.jpg" width="640" /></a></span></span></p><p style="text-align: center;"><span style="font-family: helvetica;"><span>The pandemic has devastated so many families and our hearts go out to everyone who is struggling. The kids deserve to be commended for how well they've adapted to disruptions in school and other activities. A certain carefree childhood innocence is purloined in having to explain the gravity of the situation to them. As parents, we have tried to brainstorm ways to safely have adventures (fishing, anyone?). </span><span style="margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-YxyAbYxAzZ8/X8zcz5tGOHI/AAAAAAAANTI/Ugq5sS9s-2cH2PeJgcBVEUyJUFPH6X_SQCLcBGAsYHQ/s1200/Fishing.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="1200" height="426" src="https://1.bp.blogspot.com/-YxyAbYxAzZ8/X8zcz5tGOHI/AAAAAAAANTI/Ugq5sS9s-2cH2PeJgcBVEUyJUFPH6X_SQCLcBGAsYHQ/w640-h426/Fishing.jpg" width="640" /></a></span></span></p><p style="text-align: center;"><span style="font-family: helvetica;"><span>The girls were rightfully disappointed when we postponed plans to unite with Travis' family for Thanksgiving. With Christmas around the corner, sitting on Santa's lap has been replaced by a drive-by wave to Santa. But when it comes right down to it, we are grateful for our health and I believe hindsight will illuminate the creative ways we adapted and made the most of this unprecedented time. </span></span></p><p style="text-align: center;"><span style="font-family: helvetica;"><span style="margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-Xws15KjB4lU/X8zMuxQtV3I/AAAAAAAANSc/WXHBbmGhRugK1ZJQPjUnep9YHe6i4yTBwCLcBGAsYHQ/s1200/IMG_6284.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="800" height="640" src="https://1.bp.blogspot.com/-Xws15KjB4lU/X8zMuxQtV3I/AAAAAAAANSc/WXHBbmGhRugK1ZJQPjUnep9YHe6i4yTBwCLcBGAsYHQ/w426-h640/IMG_6284.jpg" width="426" /></a></span></span></p><p style="text-align: center;"><span style="font-family: helvetica;">We still have Christmas cookies and Hallmark movies and car rides through the neighborhood to look at Christmas lights. Not to mention a whole lot of family togetherness, which, during its finer moments enhances our bond, and during its challenging moments, builds character (trying to be positive here - ha!). </span><a href="https://1.bp.blogspot.com/-Zm8UOEjKdF8/X8zMotLnIOI/AAAAAAAANSU/MV_FcZxfABEWlepsQLpTmIEMVvOmNTiMACLcBGAsYHQ/s1200/Group%2Bwatermark.jpg" style="font-family: helvetica; margin-left: 1em; margin-right: 1em;"><span><img border="0" data-original-height="857" data-original-width="1200" height="458" src="https://1.bp.blogspot.com/-Zm8UOEjKdF8/X8zMotLnIOI/AAAAAAAANSU/MV_FcZxfABEWlepsQLpTmIEMVvOmNTiMACLcBGAsYHQ/w640-h458/Group%2Bwatermark.jpg" width="640" /></span></a></p><p></p><div style="text-align: center;"><span style="font-family: helvetica;">As par for the cursed course of 2020, my DSLR camera lens rolled off the table and had to be sent off for expensive repairs. The last photos taken with the camera appear on this blog post and leave me in eager anticipation of our reunion with the refurbished lens. File that under #YouDontKnowWhatYouHaveUntilItsGone. My New Years Resolution will be to print, frame, and display more photos of these precious faces. </span></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-VBn4mnkfhCY/X8zMvaikZ9I/AAAAAAAANSk/IZzl9Rea82gTwbD6nl7QdrGDqoH5_ehTQCLcBGAsYHQ/s1200/Josie%2Band%2BMerryn.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="857" data-original-width="1200" height="458" src="https://1.bp.blogspot.com/-VBn4mnkfhCY/X8zMvaikZ9I/AAAAAAAANSk/IZzl9Rea82gTwbD6nl7QdrGDqoH5_ehTQCLcBGAsYHQ/w640-h458/Josie%2Band%2BMerryn.jpg" width="640" /></span></a></div><span style="text-align: left;"><div style="text-align: center;"><span style="font-family: helvetica;"> </span></div><div style="text-align: center;"><span style="font-family: helvetica;">With the holiday season among us, we wish you all peace, hope, love, and health. Stay safe!</span></div></span></div><div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-IgkyFAS_0WE/X8zMu3nphSI/AAAAAAAANSg/_gFLgvoppV8pIoeYXvtjAOyi91qPoq2-wCLcBGAsYHQ/s1200/IMG_6323.jpg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: helvetica;"><img border="0" data-original-height="857" data-original-width="1200" height="458" src="https://1.bp.blogspot.com/-IgkyFAS_0WE/X8zMu3nphSI/AAAAAAAANSg/_gFLgvoppV8pIoeYXvtjAOyi91qPoq2-wCLcBGAsYHQ/w640-h458/IMG_6323.jpg" width="640" /></span></a></div><span style="font-family: trebuchet;"><br /></span><div class="separator" style="clear: both; text-align: center;"><span style="font-family: trebuchet;"><br /></span></div><span style="font-family: trebuchet;"><br /><a href="https://1.bp.blogspot.com/-00P-o4lqIDU/X8zMFCoKnPI/AAAAAAAANRY/IhXYG0dnOhsHo_8qHkWPadF2F4kI1EZcACLcBGAsYHQ/s1200/Group%2BPumpkins%2BWatermark.jpg" style="margin-left: 1em; margin-right: 1em; text-align: center;"><br /></a></span><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><p></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com1tag:blogger.com,1999:blog-1369867321501732562.post-35461500371157253572020-10-30T06:18:00.004-07:002020-10-30T06:18:50.799-07:00Elizabeth’s Party with Strangers<blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><iframe frameborder="0" height="270" src="https://www.youtube.com/embed/xsyxgFaLcD4" width="480"></iframe></blockquote><p style="text-align: center;"><span style="font-family: helvetica;">I always teased my mom about how she threw Leanne these elaborate birthday parties and I got nothing. She would promise to throw me a big party, too. I would laugh and tell her that unlike Leanne, I didn't have hundreds of friends to invite. So in this moment, with tears streaming down my face, I felt my mom there. Of course she was in on it. Mama Hop left my birthday in Leanne's hands and Leanne saw to it that I was properly celebrated. I will never be as popular and beloved as Leanne, but Leanne loves me more than a million people combined ever could. 10-10-2020. </span></p>ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com4tag:blogger.com,1999:blog-1369867321501732562.post-42630267863598199242020-05-21T15:38:00.000-07:002020-05-21T16:02:18.546-07:00The Most Terrifying Moment <div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-VQvmpia52Gk/XsbwNcr8NfI/AAAAAAAANB4/LpRFEPBZOU0aF54uDHexur1P-kVgxGM9wCLcBGAsYHQ/s1600/IMG_6676.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="1333" data-original-width="1001" height="640" src="https://1.bp.blogspot.com/-VQvmpia52Gk/XsbwNcr8NfI/AAAAAAAANB4/LpRFEPBZOU0aF54uDHexur1P-kVgxGM9wCLcBGAsYHQ/s640/IMG_6676.jpg" width="480" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Living in an era of the Internet, where information is disseminated easily and rapidly, deciding what information and how much detail to share can be difficult. We've received multiple inquiries about our silence on social media lately and finding the appropriate response has been a challenge. I consider Instagram to be a digital photo album where we preserve memories. However, there are some moments in life that we'd rather not remember.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">While this story I'm about to share is not a secret, it is personal. And sometimes social media can feel impersonal, frivolous, and even invasive. However, we've always strived for honesty, and more importantly, we realize the inquiries are coming from a place of genuine concern. </span></div>
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<a href="https://1.bp.blogspot.com/-itCR8AQA7q0/XsbwNOivAjI/AAAAAAAANCQ/T7-FzTwzS3AI9lZJjQ4owRS7Z_hkDdsygCPcBGAYYCw/s1600/IMG_6680.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="480" src="https://1.bp.blogspot.com/-itCR8AQA7q0/XsbwNOivAjI/AAAAAAAANCQ/T7-FzTwzS3AI9lZJjQ4owRS7Z_hkDdsygCPcBGAYYCw/s640/IMG_6680.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Last Saturday night, Leanne had a choking incident so severe that she turned blue and lost consciousness. An ambulance was called and fortunately, she began breathing before the paramedics arrived. </span></div>
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<a href="https://1.bp.blogspot.com/--utiTWySReA/XsbwNxAwYOI/AAAAAAAANCU/OM15iE3jxjwuAxT-Xu5V6KxsAD9U95f8QCPcBGAYYCw/s1600/IMG_6719.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="480" src="https://1.bp.blogspot.com/--utiTWySReA/XsbwNxAwYOI/AAAAAAAANCU/OM15iE3jxjwuAxT-Xu5V6KxsAD9U95f8QCPcBGAYYCw/s640/IMG_6719.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="font-family: "trebuchet ms" , sans-serif;">Given that we are currently experiencing a global pandemic, the paramedics confirmed that her vitals were strong, and advised against taking her to the emergency room. Leanne's physicians have been notified, and she is scheduled to have an EGD (</span><span style="background-color: white; color: #222222;">Esophagogastroduodenoscopy) next Wednesday. </span></span></div>
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<a href="https://1.bp.blogspot.com/-3RC6XQgJTVk/XsbwNUl7lkI/AAAAAAAANCg/GO8TsVdsCjQkS3XZj6YwY7Nyaq1AKEzBwCPcBGAYYCw/s1600/IMG_6698.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="480" src="https://1.bp.blogspot.com/-3RC6XQgJTVk/XsbwNUl7lkI/AAAAAAAANCg/GO8TsVdsCjQkS3XZj6YwY7Nyaq1AKEzBwCPcBGAYYCw/s640/IMG_6698.jpg" width="640" /></span></a></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: Trebuchet MS, sans-serif;">That incident was the most terrifying experience of my life. But in reflecting on that traumatic moment, Mr. (Fred) Rogers famous quote comes to mind, </span></span></div>
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<span style="background-color: white; color: #222222;"><span style="font-family: Trebuchet MS, sans-serif;"><i>"Look for the helpers. You will always find people who are helping." </i></span></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><span style="color: #222222; font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white;">Everyone was outside, and when I went to the door and screamed for help, multiple neighbors came running. </span></span><span style="background-color: white; color: #222222;">Travis dialed 911 and followed the instructions provided by the dispatch operator. </span><span style="background-color: white; color: #222222;"> </span><span style="background-color: white; color: #222222;">Our neighbor appeared in the doorway and he picked Leanne up and attempted to do the Heimlich. He did not leave her side until the paramedics arrived. His wife lead the triage, addressing the needs of the various family members. Another neighbor ran to get a doctor who lives down the street. One neighbor ushered Biddy outside while other neighbors rallied to distract and calm my children. And one neighbor held me while I sobbed. </span></span></div>
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<a href="https://1.bp.blogspot.com/-Rx-GkqFzRzo/XsbwOa-_QRI/AAAAAAAANCc/CFB7S4s2KkQg54YjLhGa4WBvCVPw8ShPQCPcBGAYYCw/s1600/IMG_6802.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="480" src="https://1.bp.blogspot.com/-Rx-GkqFzRzo/XsbwOa-_QRI/AAAAAAAANCc/CFB7S4s2KkQg54YjLhGa4WBvCVPw8ShPQCPcBGAYYCw/s640/IMG_6802.jpg" width="640" /></span></a></div>
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<span style="background-color: white; color: #222222; font-family: Trebuchet MS, sans-serif;">The heroism of this group of people who heard my cry for help, had no clue what was happening, and came running anyway is something that I will never forget. When the EMT's arrived, one asked if everyone standing in our home was family and my next door neighbor replied, "We're neighbors but we are a family." And that means so much to someone who has so little family left.</span></div>
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<a href="https://1.bp.blogspot.com/-yUU3UyFFsLE/XsbwOS-etYI/AAAAAAAANCY/C-sk0CD17G8t9aJ0dImso9tFVYnj9ntIwCPcBGAYYCw/s1600/IMG_6787.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="1333" data-original-width="1001" height="640" src="https://1.bp.blogspot.com/-yUU3UyFFsLE/XsbwOS-etYI/AAAAAAAANCY/C-sk0CD17G8t9aJ0dImso9tFVYnj9ntIwCPcBGAYYCw/s640/IMG_6787.jpg" width="480" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">At Leanne's pre-op appointment today, I tried explaining how terrified I felt and the doctor said, "I get it; she's your person."</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I thought about that for a long time afterwards and ultimately concluded that Leanne is not my 'person'." Travis is 'my person'." Leanne's role in my life transcends human relationships for me. She's like a guardian angel who has always been by my side. I don't know who I am without her.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And that leads me to why I am sharing this story: When Leanne finally regained consciousness and calmed down, she addressed each of my neighbors individually and insisted that they pray for her. She named their children and insisted that their children pray for her. Leave it to our diva to demand a prayer vigil in her own honor. Travis says "That's the moment I knew she was okay." </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">To that point, please keep Leanne in your thoughts and prayers as we take the necessary measures to ensure that her health is restored. </span></div>
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<a href="https://1.bp.blogspot.com/-fZA1fPp9kZA/XsbwObO7xTI/AAAAAAAANCg/hpLYwoQne5gAeXuD7YmgR-l57-Jir5iZACPcBGAYYCw/s1600/IMG_6788.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="1333" data-original-width="1001" height="640" src="https://1.bp.blogspot.com/-fZA1fPp9kZA/XsbwObO7xTI/AAAAAAAANCg/hpLYwoQne5gAeXuD7YmgR-l57-Jir5iZACPcBGAYYCw/s640/IMG_6788.jpg" width="480" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The blogosphere prayer warriors have always been there for us and we truly appreciate your concern and support.</span></div>
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com26tag:blogger.com,1999:blog-1369867321501732562.post-8719463650087940932020-03-19T08:33:00.002-07:002020-03-19T08:35:25.588-07:00Coronavirus 2020: A Social Story <div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;">Hello to our virtual friends! Never before have we experienced the importance of our ability to connect online like we are experiencing in the wake of the Coronavirus. Difficult scenarios like this one present an opportunity to see the best that humanity has to offer; even in isolation, people are uniting to support one another through this unprecedented challenge by sharing ideas, prayer, and uplifting stories.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Here at our house, we're trying to put a positive spin on things. The girls have been finding creative ways to entertain themselves. You can find more of our adventures documented on Instagram @CatfishwithKetchup.</span></div>
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<a href="https://1.bp.blogspot.com/-nEFk995Ofe8/XnODI1TNZHI/AAAAAAAAM8w/G2R1iNIC2CMOYm25S-99e9-sZPBVvYX5ACLcBGAsYHQ/s1600/IMG_3688%2B%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://1.bp.blogspot.com/-nEFk995Ofe8/XnODI1TNZHI/AAAAAAAAM8w/G2R1iNIC2CMOYm25S-99e9-sZPBVvYX5ACLcBGAsYHQ/s640/IMG_3688%2B%25281%2529.jpg" width="640" /></span></a></div>
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<a href="https://1.bp.blogspot.com/-qMmzbHadhZw/XnODI2isk5I/AAAAAAAAM84/pr8rxDWt5cQ79z7ZUNLKC4cFNxh5t1prwCLcBGAsYHQ/s1600/IMG_3690.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="1067" data-original-width="1600" height="426" src="https://1.bp.blogspot.com/-qMmzbHadhZw/XnODI2isk5I/AAAAAAAAM84/pr8rxDWt5cQ79z7ZUNLKC4cFNxh5t1prwCLcBGAsYHQ/s640/IMG_3690.jpg" width="640" /></span></a></div>
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<a href="https://1.bp.blogspot.com/-hzZ12c3xhnA/XnODIwW7DzI/AAAAAAAAM80/i0jeeh0qFqUioIJ8bHg1mPes4FiazfoNwCLcBGAsYHQ/s1600/IMG_3691.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://1.bp.blogspot.com/-hzZ12c3xhnA/XnODIwW7DzI/AAAAAAAAM80/i0jeeh0qFqUioIJ8bHg1mPes4FiazfoNwCLcBGAsYHQ/s640/IMG_3691.jpg" width="640" /></span></a></div>
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<a href="https://1.bp.blogspot.com/-svw7dOt1Bok/XnODJgy1ftI/AAAAAAAAM88/q_M9s83N2SA6rCsruszS-XR6EYOsKuphQCLcBGAsYHQ/s1600/IMG_3694.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://1.bp.blogspot.com/-svw7dOt1Bok/XnODJgy1ftI/AAAAAAAAM88/q_M9s83N2SA6rCsruszS-XR6EYOsKuphQCLcBGAsYHQ/s640/IMG_3694.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif; margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-3NH-hWB2dzU/XnODJ1cx9EI/AAAAAAAAM9A/I4h9ZUkl7RcEpCsnwKUcEw2dJYgCrO8FwCLcBGAsYHQ/s1600/IMG_3722%2B%25281%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://1.bp.blogspot.com/-3NH-hWB2dzU/XnODJ1cx9EI/AAAAAAAAM9A/I4h9ZUkl7RcEpCsnwKUcEw2dJYgCrO8FwCLcBGAsYHQ/s640/IMG_3722%2B%25281%2529.jpg" width="640" /></a></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">But for individuals with special needs, a disruption in the daily routine can be upsetting no matter how you spin it. That's when social stories come in handy. After a chain of Leanne's activities have been canceled, it was time to break the difficult news to Leanne that she could no longer go to work. Josie needed to know that she would not be returning to school anytime soon. And they needed an explanation that was neither alarming nor ominous. So I did what I always do and I wrote a social story. </span></div>
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<a href="https://1.bp.blogspot.com/-dni1sfP9-5I/XnODunIUieI/AAAAAAAAM9I/OD15f_jFXR0vHNuUP900RFT-TCBgyN1wACLcBGAsYHQ/s1600/IMG_3747.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="480" src="https://1.bp.blogspot.com/-dni1sfP9-5I/XnODunIUieI/AAAAAAAAM9I/OD15f_jFXR0vHNuUP900RFT-TCBgyN1wACLcBGAsYHQ/s640/IMG_3747.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">I made a generic version of it to share with our blog followers. You can find it <b><a href="https://drive.google.com/file/d/1eFj3u78dynARomkNhLsj25HSApSNrKAB/view?usp=sharing">HERE</a></b>. If you're inclined to write your own custom social story, check out the tips that can be found <a href="http://www.confessionsofthechromosomallyenhanced.com/2019/11/5-tips-for-writing-effective-social.html">in this post. </a></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><a href="https://drive.google.com/file/d/1eFj3u78dynARomkNhLsj25HSApSNrKAB/view?usp=sharing"><img border="0" data-original-height="655" data-original-width="548" height="320" src="https://1.bp.blogspot.com/-jiL5Z0txvzk/XnODQGouwgI/AAAAAAAAM9E/ZZuJG2JJlE8_p_4eXunKz1CwxXJEE5XEwCLcBGAsYHQ/s320/Coronavirus%2BCover.JPG" width="267" /></a></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">We read through the social story as a family and then the girls asked questions. Leanne asked what she's supposed to wear; her daily schedule dictates what she wears whether she's going to the gym (exercise clothes), going to work (uniform), or volunteering in the community (business casual), or church (formal). This is the type of logistical question that I would expect when her routine has been disrupted. Then she asked, "Is my birthday canceled?" Bless. Her. Heart. I had to fight back tears on that one. I told her that I could not promise friends nor a meal at the restaurant of her choice, but that nothing would stop us from celebrating HER here at our house. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">In these uncertain times, we must get resourceful and creative. But above all, let's focus on the most important thing: loving one another.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Stay home. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Stay healthy. </span></div>
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com2tag:blogger.com,1999:blog-1369867321501732562.post-54621432173509522802020-01-01T07:48:00.001-08:002020-01-01T07:48:25.603-08:00Merry Christmas and Happy 2020!<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-hGrmfixNQd4/Xgy-dbTpNpI/AAAAAAAAMxg/PyoUbIVwiCc2EDzKfghweuzk6CXYimAKQCLcBGAsYHQ/s1600/Christmas%2BCard%2BPhoto%2B2019.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="640" src="https://1.bp.blogspot.com/-hGrmfixNQd4/Xgy-dbTpNpI/AAAAAAAAMxg/PyoUbIVwiCc2EDzKfghweuzk6CXYimAKQCLcBGAsYHQ/s640/Christmas%2BCard%2BPhoto%2B2019.jpg" width="426" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">What a busy holiday season it was for the six of us! On Christmas morning, we exchanged gifts and then rushed off to the airport to fly out to visit Travis' family. We had a wonderful time out West with YaYa, Papa, Uncle Corey, Aunt Sarah, and Cousin Abby. For more photos and updates, refer to our <a href="https://www.instagram.com/catfishwithketchup/?hl=en">Instagram page @CatfishWithKetchup</a>.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Wishing you a happy and healthy 2020!</span></div>
<br />ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com0tag:blogger.com,1999:blog-1369867321501732562.post-4983793861390881522019-12-07T10:55:00.000-08:002019-12-07T10:56:38.738-08:00Holiday Gift Ideas: ABA Favorites<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-yIGyREnK9K8/Xevzz1tYPAI/AAAAAAAAMvI/8NWYZbH6c1MHu9S0pqPM7VQ9AqpEc41dwCEwYBhgL/s1600/Cover%2BPhoto.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="300" src="https://1.bp.blogspot.com/-yIGyREnK9K8/Xevzz1tYPAI/AAAAAAAAMvI/8NWYZbH6c1MHu9S0pqPM7VQ9AqpEc41dwCEwYBhgL/s400/Cover%2BPhoto.png" width="400" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">When Elizabeth first approached me about doing a round-up of all my favorite ABA toys, I thought to myself, "Sure thing! I have a ton of great ideas to share." Forgetting that a "ton of great ideas," meant that I had to narrow them down and combine them into a format that parents would find useful. I reached out to fellow teachers, therapists, and parents. With their help, I came up with an extensive list containing over 100 types of toys sorted into 10 separate categories. I chose my favorites from the list and used them to create this post.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">But first, let me tell you a little bit about myself.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My name is Dana Howell and I am a BCBA (Board Certified Behavior Analyst.) I have spent the last 10+ years working with children in multiple different capacities, ranging from speech-language pathology assistant to special education teacher and everything in between. I started my company Behavioral Interventions And Solutions, LLC (BIAS) because, over the years, I have developed an interest in helping parents learn valuable strategies to assist with developing skills and managing behavior within their homes. There is so much information out there for parents to digest, and it is essential to know that it is coming from a source you can trust.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Ok, enough about me. Time to get back to toys!</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Some of my favorite toy brands that you will see recurring throughout this post include Melissa and Doug, Educational Insights, Peaceable Kingdom, Learning Resources, Learning Journey, and Fat Brain Toys.</span></span></div>
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<a href="https://1.bp.blogspot.com/-cKX-iE47Fsg/Xevzz93kMUI/AAAAAAAAMu4/lK4kx_noAUYQqQ-SldJKkHBwFG5FEgpDQCEwYBhgL/s1600/Photo%2B1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="300" src="https://1.bp.blogspot.com/-cKX-iE47Fsg/Xevzz93kMUI/AAAAAAAAMu4/lK4kx_noAUYQqQ-SldJKkHBwFG5FEgpDQCEwYBhgL/s400/Photo%2B1.png" width="400" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Each of these brands incorporates a variety of educational skills into their toys. Not to mention that they are colorful, durable, and appeal to children and adults alike.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">I then divided my favorite toys into eight different categories: cause and effect, puzzles, open-ended, close-ended, board games, sensory, fine motor, and gross motor. You will quickly see that many of the toys I highlight in this post can actually fit into more than one category.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "trebuchet ms" , sans-serif;">Cause and Effect Toys</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Children learn through exploration, and when they have access to cause and effect toys, they begin to understand that their actions make things happen. Cause and effect toys are designed to increase hand-eye coordination and often follow a repetitive sequence that is essential in helping children develop early communication and problem-solving skills.</span></span></div>
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<a href="https://1.bp.blogspot.com/-IL_VqgutCxw/Xevzz433g8I/AAAAAAAAMvE/DkJdJpYDPBMDs6czmTxu6uHKrOQjdHoiQCEwYBhgL/s1600/Photo%2B2.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="300" src="https://1.bp.blogspot.com/-IL_VqgutCxw/Xevzz433g8I/AAAAAAAAMvE/DkJdJpYDPBMDs6czmTxu6uHKrOQjdHoiQCEwYBhgL/s400/Photo%2B2.png" width="400" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My favorite cause and effect toys include musical instruments, roll towers, toys that pop/spin/move/make a sound at the push of a button, stacking cups & dump and fill style toys.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "trebuchet ms" , sans-serif;">Close-Ended Toys</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Toys that are considered to be close-ended have a distinct stopping point. When all the pieces are put together or taken apart, the activity is finished. Children who struggle with attention or task completion will often benefit from close-ended tasks.</span></span></div>
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<a href="https://1.bp.blogspot.com/-gJFDlbQaooA/Xevz0jbT7yI/AAAAAAAAMu8/2Se_-nnKJ68qnVKsXiO5VtrQOxbcFeUxQCEwYBhgL/s1600/Photo%2B3.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="300" src="https://1.bp.blogspot.com/-gJFDlbQaooA/Xevz0jbT7yI/AAAAAAAAMu8/2Se_-nnKJ68qnVKsXiO5VtrQOxbcFeUxQCEwYBhgL/s400/Photo%2B3.png" width="400" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My favorite close-ended toys include pattern blocks, shape sorters, Mr. Potato Head, ring stacker, Snap and Sort, lacing cards/beads & single-inset puzzles.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "trebuchet ms" , sans-serif;">Open-Ended Toys</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">On the other hand, open-ended toys are toys that can be used and over for hours on end. These toys typically require the use of a child's imagination and creativity. Open-ended toys are designed to increase language acquisition, social skill development and self-expression.</span></span></div>
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<a href="https://1.bp.blogspot.com/-1hFmlkjcLro/Xevz053ICDI/AAAAAAAAMvE/BwUQkQgGL44z4Sqa3BUeoBKMxgGykqMwACEwYBhgL/s1600/Photo%2B4.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="300" src="https://1.bp.blogspot.com/-1hFmlkjcLro/Xevz053ICDI/AAAAAAAAMvE/BwUQkQgGL44z4Sqa3BUeoBKMxgGykqMwACEwYBhgL/s400/Photo%2B4.png" width="400" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My favorite open-ended toys include Legos, Magna Tiles, pretend play sets and costumes, marble mazes, blocks, train sets & Brain Flakes.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "trebuchet ms" , sans-serif;">Puzzles</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Puzzles are one of those toys that become a category of their own. They range in complexity from single-inset to jigsaw and can incorporate a variety of skills such as spelling, matching and imaginative play. Most puzzles are close-ended activities and also are an easy way to increase fine motor skills in children.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My favorite puzzles include matching puzzles, floor puzzles, sound puzzles, alphabet/spelling puzzles & magnetic dress-up dolls.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "trebuchet ms" , sans-serif;">Board Games</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Board games are a great way to get the whole family together for an activity. Children learn essential skills such as turn-taking, following directions, waiting and sportsmanship when they participate in structured activities like playing a game. Some games even focus on teamwork and cooperation, encouraging all players to work together to achieve a goal.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My favorite games include anything by Peaceable Kingdom or Educational Insights, Zingo, Cariboo, Guess Who, Connect 4, Don't Break the Ice, Pop-Up Pirate & Suspend.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "trebuchet ms" , sans-serif;">Sensory Toys</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Many children also enjoy engaging in sensory play. Often these activities involve exploring different textures, scents, movements, and sounds. Sensory toys stimulate a child's senses and allow them to develop skills around self-regulation.</span></span></div>
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<span style="font-size: 11pt; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">My favorite fine motor toys include anything with tweezers, droppers, stickers, or other small pieces, and my favorite gross motor toys include ribbon dancers, bowling, trampolines, yoga balls, balance boards & stepping stones.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><a href="https://www.amazon.com/shop/biasbehavioral"><span style="font-family: "trebuchet ms" , sans-serif;">https://www.amazon.com/shop/biasbehavioral</span></a></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">(Behavioral Interventions And Solutions, LLC is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program. As an Amazon Associate, I earn from qualifying purchases.)</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "trebuchet ms" , sans-serif;">Also, be sure to check out <a href="https://www.biasbehavioral.com/">https://www.biasbehavioral.com</a>. You can find a variety of visual supports that accompany your favorite games and toys available as a digital download in my store.</span></span></div>
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com0tag:blogger.com,1999:blog-1369867321501732562.post-5564561834735385952019-11-23T13:24:00.001-08:002019-11-23T13:24:23.410-08:005 Tips for Writing Effective Social Stories <div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-t4tB09w164k/XdmUArPW2rI/AAAAAAAAMmU/ur5Dmhjfmmwwcs-m-G2zIrNglUCbINPKQCLcBGAsYHQ/s1600/Social%2BStories%2BTips.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="660" data-original-width="990" height="426" src="https://1.bp.blogspot.com/-t4tB09w164k/XdmUArPW2rI/AAAAAAAAMmU/ur5Dmhjfmmwwcs-m-G2zIrNglUCbINPKQCLcBGAsYHQ/s640/Social%2BStories%2BTips.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Something weird is going on in the universe because we have been inundated with request after request for guidance on one topic: social stories. We use social stories as simple, personalized guides designed to prepare an individual for an impending change, life event, or new experience. I've written countless social stories on topics ranging from moving, having surgery, starting school, impending trips, behavior, responsibility, and on and on...</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Why bother? So often, we assume that children and/or individuals with special needs do not understand nor care about things that are happening around them. We take for granted that they'll just adapt and come along for the ride. In my experience, this mentality can yield really negative consequences and cause great duress for the individual and his/her family. Social stories are a great way to prepare for change or a new experience by explaining what to expect in simple terms. This allows an individual to acclimate to the topic, thus, discouraging negative emotions/behaviors that frequently occur when someone is caught off guard. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Think about it this way; the world moves at a pace that is often uncomfortably fast for an individual with special needs. When we see negative behaviors (stubbornness, refusals, tantrums), it is the individual's way of communicating "Wait! I don't understand. I'm not comfortable! I don't like it!" If we know a change or life challenge is coming up, and we can offer a friendly story explaining what to expect and offering coping tools, and we allow the individual time to digest the information and adjust, he/she will be far more comfortable and the outcome will be better. Makes sense? Okay, let's get started! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">There are tons of different approaches to writing social stories and trying to make yourself a subject matter expert before even opening a Word document will overwhelm and scare you away from the idea altogether. Keep it simple! </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">1. <b>Reading Level</b> - A social story may look different depending on the reader. One individual may need one simple sentence per page where as another individual may be able to handle paragraphs of explanation. A good way to customize your social story for your reader is to look at the individual's favorite books and model that format. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">2. <b>Personalization</b> - Josie and Leanne both love looking at photos of themselves and people they know so I try to use personal photos whenever I can. With cell phones, it's quick and easy to take photos. No printer? No problem. Take your phone to Walgreens and the photo lab tech can help you get them printed. Or use Shutterfly to create a customized book. If photos aren't an option, you can use a Google image search, Boardmaker, or an image search within your word processing software. I use Windows products (usually Publisher but Word and Powerpoint also work well) and there's a function under "Insert > Online Pictures" that allows you to search for a relevant photo.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">3. <b>Do your research</b> - When Leanne had her EGD with dilation, I was unfamiliar with the procedure and recovery so I talked to people I know who have experienced it. I even called the gastroenterology office and explained that I was writing a social story for Leanne and I asked her to tell me about the procedure in simple, easy-to-understand steps. Medical professionals should be happy to assist you with a project like this. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">If we're going somewhere unfamiliar and I'm preparing Josie with a social story, I will go online and find pictures of the hotel and various landmarks around the city. If we're going to be visiting relatives that Josie hasn't seen in awhile, I will insert their photos along with their names. More than once, I've texted people asking for a photo of themselves that I can use in a social story. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">4. <b>Acknowledge the challenge or fear</b>... - When it comes to medical procedures, if the recovery will involve pain or a cast or restricted activities, I will include that information. <a href="http://www.confessionsofthechromosomallyenhanced.com/2014/08/josies-social-story.html">I've written social stories that involve saying goodbye to friends</a> and loved ones and I acknowledge that we will miss them. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">5. ...BUT <b>Keep it positive</b> - It's always important to offer reassurance. When Josie was having a tonsillectomy, her social story acknowledged that her throat would hurt but that each day it would feel better and better. It stressed the importance of taking her medication in order to minimize the pain. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When we were moving, I acknowledged that we would miss our friends but that Josie's family would remain with her and that we would make new friends. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b>* Behavior Bonus Tip: </b> When writing a social story designed to correct a behavior, it's best not to place the emphasis on the negative behavior but rather focus on the replacement behaviors that we want to see. In other words, don't tell the child to stop doing (negative behavior). Tell them what you want them to do instead. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This came up recently when I received an email from Kelli, about her 10 year-old son, Colin, who has Down syndrome. Kelli asked me to help her write a social story addressing behavior concerns including being too handsy (Colin especially loves touching hair but sometimes it bothers his classmates), hugging too frequently for too long, and general boundary acknowledgement. These are very common issues with children with Down syndrome so I asked for Kelli's permission to share the story on the blog. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I set out to create a positive, instructional narrative that didn't make Colin feel like we were shaming or criticizing him, but rather we were outlining what Colin's goals were (friendship, being invited to participate in sports and games, enhanced communication, and proud teachers and parents) and we were offering him the tools he needed to achieve those goals. Kelli went above and beyond by reaching out to Colin's friends and teachers and asking them to stage photos to appear in the social story illustrating the ideas presented. They were happy to do this to help Colin. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="https://drive.google.com/file/d/1Vqb6uQ1MKHpALKsBQzjv71jb2qgEeo6w/view?usp=sharing">Download "I Can Be A Good Friend" here.</a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>One last social story hack:</i> Google it! There are tons of social stories available online and on the website www.teacherspayteachers.com. Many are completely free. While I generally prefer to write my own social story with my own photos, reading some online examples can give me inspiration for what to include in the narrative. Here's a great place to start: <a href="https://www.abaresources.com/social-stories/">https://www.abaresources.com/social-stories/</a>.</span></div>
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com0tag:blogger.com,1999:blog-1369867321501732562.post-1557142285767166252019-11-07T11:04:00.000-08:002019-11-07T11:04:48.705-08:00A Grief Epiphany<div style="text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">I realized something about grief today. It's the most clear and meaningful realization I've had since we lost Mama Hop. Coincidentally (or not), Merryn had texted me "I miss you" in this moment of clarity as I added another crumpled tissue to my pile. I immediately shared my realization with Merryn because she "gets me" on some inexplicable level. She also carries a lot of Mama Hop in her. Those two were deeply connected.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I fielded a tough phone call this morning about the loss of a friend and neighbor that Travis and I cherished named Elaine. Upon hanging up the call, I felt compelled to write a sympathy note to her family. Before I began, I bowed my head, closed my eyes, and prayed. I wanted to channel Elaine; to call to mind her memory and to share some special things about her and how she touched our lives.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The process of writing that sympathy card was very cathartic in that I couldn't help but call to mind my own mother's passing. I felt her presence very close to me as I was writing. Words flowed out effortlessly and even though I was writing to Elaine's daughters, I had an epiphany about my own grief process:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif; margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-PRfUUbuycUk/XcRob3FyxqI/AAAAAAAAMkA/fHZxyz8L0qgb5nPqMoOMsj1YG4rxmpPBACEwYBhgL/s1600/IMG_7335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://1.bp.blogspot.com/-PRfUUbuycUk/XcRob3FyxqI/AAAAAAAAMkA/fHZxyz8L0qgb5nPqMoOMsj1YG4rxmpPBACEwYBhgL/s640/IMG_7335.jpg" width="426" /></a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;"><i>When we extract the very best qualities in someone that we've lost and we try to exemplify those qualities in our daily lives, we are honoring their memory and strengthening their legacy in the best possible way.</i> </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Strength is found in moments when I know I'm making Mama Hop proud. When I excavate patience in moments of motherhood where I'm on the brink of snapping, I feel Mama Hop's pride. When I put my own agenda aside to do something thoughtful for someone else, I feel Mama Hop's pride. And when I laugh off something that might otherwise get me into a neurotic frenzy, I can hear Mama Hop bellow "You go girl!" </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-315LRVrDW9E/XcRohpUTl9I/AAAAAAAAMkM/6hBlepS2v40ByU18cYuX7_XiXUkHacVKACEwYBhgL/s1600/IMG_6477.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-315LRVrDW9E/XcRohpUTl9I/AAAAAAAAMkM/6hBlepS2v40ByU18cYuX7_XiXUkHacVKACEwYBhgL/s640/IMG_6477.jpg" width="640" /></a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We are all humans; we have strengths and weaknesses. Mama Hop and I overlapped in many ways and we were far apart in other ways. It's cathartic to attempt to close that gap by summoning qualities that she possessed - patience, selflessness, resilience, and serenity - and push myself to honor her legacy by demonstrating those qualities in my life. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-JCjzArI0xqU/XcRohvB2FUI/AAAAAAAAMkI/Lm-2KU5x5D8JyUwzaVFJPyaDTiQIwToDwCEwYBhgL/s1600/IMG_8277.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://1.bp.blogspot.com/-JCjzArI0xqU/XcRohvB2FUI/AAAAAAAAMkI/Lm-2KU5x5D8JyUwzaVFJPyaDTiQIwToDwCEwYBhgL/s640/IMG_8277.jpg" width="426" /></a></span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">To embrace the power and the responsibility of sharing the best parts of Mama Hop with the next generation offers both purpose and healing. </span></div>
ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com3tag:blogger.com,1999:blog-1369867321501732562.post-62242156623035547732019-09-17T19:00:00.000-07:002019-09-17T19:03:02.102-07:00Tips for Preventing Alzheimer's in Individuals with Down Syndrome <div style="text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;">Did you know that by their 60's, 50% of adults with Down syndrome will develop Alzheimer's disease (<a href="https://www.ndss.org/resources/alzheimers/">source</a>)? Dr. Brian Skotko is a medical geneticist at Massachusetts General Hospital who is leading a clinical trial for a vaccination that would prevent the development of Alzheimer's in the Down syndrome population. According to Dr. Skotko, "Right now we believe that people with Down syndrome might have the key to unlock the mysteries of Alzheimer's for all of us. The pathology of their brains resemble Alzheimer's at an earlier age and can be studied." (<a href="https://abcnews.go.com/GMA/Wellness/people-syndrome-unlock-mystery-alzheimers-disease/story?id=55942847">source</a>)</span></div>
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<a href="https://1.bp.blogspot.com/-zRfIJpzNxq8/XYGNGMDepsI/AAAAAAAAMgE/9xKurvF5Hyw69cVtBJ_rVrlBR6uctn_fwCLcBGAsYHQ/s1600/IMG_4593.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1400" data-original-width="1000" height="640" src="https://1.bp.blogspot.com/-zRfIJpzNxq8/XYGNGMDepsI/AAAAAAAAMgE/9xKurvF5Hyw69cVtBJ_rVrlBR6uctn_fwCLcBGAsYHQ/s640/IMG_4593.jpg" width="456" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">In July, Dr. Skotko issued a "Down Syndrome Brain Train Summer Challenge." It was an email series that included some research-based recommendations for boosting brain health in individuals with Down syndrome.</span></div>
<a href="https://1.bp.blogspot.com/-t15T-2Ur86c/XYGKha2UbpI/AAAAAAAAMf4/Vdc2nH7UaRkqiZ5QS7VZhuqlVwAjUgwSQCEwYBhgL/s1600/IMG_3613.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-t15T-2Ur86c/XYGKha2UbpI/AAAAAAAAMf4/Vdc2nH7UaRkqiZ5QS7VZhuqlVwAjUgwSQCEwYBhgL/s640/IMG_3613.jpg" width="640" /></a><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">1. Socialization - <a href="https://www.ncbi.nlm.nih.gov/pubmed/27130624">Research</a> shows that individuals with strong social connections have a lower risk for developing Alzheimers disease. Dr. Skotko challenged families to have a 5 minute long conversation with their loved one with Down syndrome every day, featuring open-ended questions.</span></div>
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<a href="https://1.bp.blogspot.com/-T84YJxTE3HY/XYGNQFaFfZI/AAAAAAAAMgI/cXeyP-BNye8AqWEuw6bwgnMKH5tqo3vtACLcBGAsYHQ/s1600/IMG_3247.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-T84YJxTE3HY/XYGNQFaFfZI/AAAAAAAAMgI/cXeyP-BNye8AqWEuw6bwgnMKH5tqo3vtACLcBGAsYHQ/s640/IMG_3247.jpg" width="640" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">2. Exercise - <a href="https://www.ncbi.nlm.nih.gov/pubmed/30564549">Research</a> shows that exercise can enhance neuroplasticity and delay Alzheimer's disease. The <a href="https://www.heart.org/en/healthy-living/fitness/fitness-basics/aha-recs-for-physical-activity-in-adults">American Heart Association</a> recommends a minimum of 150 minutes of physical activity per week.</span></div>
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<a href="https://1.bp.blogspot.com/-pJg0TZJigGo/XYGNW7VvR7I/AAAAAAAAMgQ/jY3DW3S7COom8q_CAdhHmed5hThJUzMqwCLcBGAsYHQ/s1600/IMG_2814.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-pJg0TZJigGo/XYGNW7VvR7I/AAAAAAAAMgQ/jY3DW3S7COom8q_CAdhHmed5hThJUzMqwCLcBGAsYHQ/s640/IMG_2814.jpg" width="640" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">3. Play Memory Games - <a href="https://www.ncbi.nlm.nih.gov/pubmed/24385638">Research</a> shows improvement that lasted for 10 years in neurotypical adults who participated in memory training. The Dollar Tree has memory match cards for - you guessed it - $1. We made our own cards featuring photos of family members. </span></div>
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<a href="https://1.bp.blogspot.com/-3hmIrStSlmo/XYGNfCBo_SI/AAAAAAAAMgU/KKJC1VNBcfUF8xTtO3r5dobqw3AWuTktACLcBGAsYHQ/s1600/IMG_2818.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-3hmIrStSlmo/XYGNfCBo_SI/AAAAAAAAMgU/KKJC1VNBcfUF8xTtO3r5dobqw3AWuTktACLcBGAsYHQ/s640/IMG_2818.jpg" width="640" /></a></div>
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<a href="https://1.bp.blogspot.com/-HbwmipBGrKI/XYGNpQYr-dI/AAAAAAAAMgg/TiEYPPUo4uQ1_nXal6HFKTvRgzZ2J1mTwCLcBGAsYHQ/s1600/IMG_2835.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-HbwmipBGrKI/XYGNpQYr-dI/AAAAAAAAMgg/TiEYPPUo4uQ1_nXal6HFKTvRgzZ2J1mTwCLcBGAsYHQ/s640/IMG_2835.jpg" width="640" /></a></div>
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<a href="https://1.bp.blogspot.com/-mPw4NiI7tns/XYGNvCMtH2I/AAAAAAAAMgo/ijD9-rJcFA8pmm-VnqMDOooU1lZggmVgwCLcBGAsYHQ/s1600/IMG_2828.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-mPw4NiI7tns/XYGNvCMtH2I/AAAAAAAAMgo/ijD9-rJcFA8pmm-VnqMDOooU1lZggmVgwCLcBGAsYHQ/s640/IMG_2828.jpg" width="640" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">4. Reduce Sugar Intake - <a href="https://www.ncbi.nlm.nih.gov/pubmed/22810099">Research</a> shows that dementia risk increased dramatically with sugar intake. Children and adult females are advised to consume no more than 25 grams per day. Adult males should keep their intake at no more than 38 grams per day.</span></div>
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<a href="https://1.bp.blogspot.com/-696rfqH72Mw/XYGOuTkg4EI/AAAAAAAAMg4/wlAERb06xEYlNLWFlWUWxEHqHofGvvnWACLcBGAsYHQ/s1600/IMG_3518.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="714" data-original-width="1000" height="456" src="https://1.bp.blogspot.com/-696rfqH72Mw/XYGOuTkg4EI/AAAAAAAAMg4/wlAERb06xEYlNLWFlWUWxEHqHofGvvnWACLcBGAsYHQ/s640/IMG_3518.jpg" width="640" /></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">5. Improve Sleep Hygiene - <a href="https://www.ncbi.nlm.nih.gov/pubmed/?term=Breslin+obstructive+sleep+cognition">Research</a> linked Obstructive Sleep Apnea Syndrome with increased cognitive deficits in Down syndrome. Dr. Skotko recommends learning the signs of sleep apnea, having a sleep study if symptomatic, and wearing the CPAP mask as prescribed. <a href="https://www.massgeneral.org/children/down-syndrome/breathing-mask-tips.aspx">Click here</a> for some tips for making that happen. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">To learn more on how you can help prevent Alzheimer's disease from developing in your loved one with Down syndrome, check out Dr. Brian Skotko's on demand video series "<a href="https://vimeo.com/ondemand/downsyndromebraintrain/">Down Syndrome Brain Train</a>". </span></div>
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com3tag:blogger.com,1999:blog-1369867321501732562.post-90566961435555999462019-07-10T04:54:00.001-07:002019-07-10T04:54:29.501-07:00Summer 2019 Update<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">Summer is so crazy. It's a good crazy; you can't help but love it. We're talking camps, softball, tee ball, tae kwon do, speech therapy, occupational therapy, tutoring, "intellectual development" (because Merryn doesn't like to call hers 'tutoring'), swimming lessons, ballet...</span></div>
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<a href="https://1.bp.blogspot.com/-wHGGQsGmpt8/XSXC2nB_QgI/AAAAAAAAMaM/hHksLLJ-e9sB9OkHUZgdHBxkhxxuSnzPwCLcBGAs/s1600/IMG_1906.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://1.bp.blogspot.com/-wHGGQsGmpt8/XSXC2nB_QgI/AAAAAAAAMaM/hHksLLJ-e9sB9OkHUZgdHBxkhxxuSnzPwCLcBGAs/s640/IMG_1906.jpg" width="426" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We celebrated two major birthdays (Lydia and Leanne) and two major holidays (Father's Day and Independence Day).</span></div>
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<a href="https://1.bp.blogspot.com/-8oGR6vmq3bI/XSXC2hUqtKI/AAAAAAAAMaI/edIQyIi9RdYOmRTeM-PzSCR5RNrEHVh_ACLcBGAs/s1600/IMG_1785.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-8oGR6vmq3bI/XSXC2hUqtKI/AAAAAAAAMaI/edIQyIi9RdYOmRTeM-PzSCR5RNrEHVh_ACLcBGAs/s640/IMG_1785.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">To celebrate turning 5, Biddy (Lydia) had a "Princess Party" hosted by Anna and Elsa. We assumed she'd only want to invite the girls from her preschool class but she couldn't omit her beloved first crush, Edward, so it ended up being lots of kids and lots of fun.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">A week later, we turned our attention to everyone's favorite aunt. Leanne had been planning her Applebee's 42nd birthday extravaganza since January. We all wore Leanne's favorite color as a tribute to her.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">We were touched by how many friends and neighbors from back home sent Leanne cards and Starbucks gift cards.</span></div>
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<a href="https://1.bp.blogspot.com/-lutSX9WkRSY/XSXC3S-9blI/AAAAAAAAMaY/DUbZMqJ2v7ocL7JH_yy2seM4FPJaj4g-ACLcBGAs/s1600/IMG_1970.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-lutSX9WkRSY/XSXC3S-9blI/AAAAAAAAMaY/DUbZMqJ2v7ocL7JH_yy2seM4FPJaj4g-ACLcBGAs/s640/IMG_1970.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Leanne's vociferous birthday planning starts six months in advance and anyone who encounters her during that period is going to hear all about it. One year, the priest even announced it at mass, per Leanne's insistence. She proudly waves her "Over the hill" flag and holds up four fingers on one hand and two on the other so everyone knows exactly how many years this earth has been blessed by her presence. But hey, when you look this good, why not tell everyone?!</span></div>
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<a href="https://1.bp.blogspot.com/-f7Yd1t-ZyZE/XSXC32ahj_I/AAAAAAAAMac/cyGf69OHm6k1fqAUoSCGpxmzF4yHBdgrwCLcBGAs/s1600/IMG_1980.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-f7Yd1t-ZyZE/XSXC32ahj_I/AAAAAAAAMac/cyGf69OHm6k1fqAUoSCGpxmzF4yHBdgrwCLcBGAs/s640/IMG_1980.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Speaking of adorable faces, we had to capture this monumental smile with its conspicuous vacancy. Josie is showcasing her toothless summer grin daily and we can't get enough.</span></div>
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<a href="https://1.bp.blogspot.com/-NTSOND5qKKc/XSXC4cMaGjI/AAAAAAAAMag/SyXFdYlxNdkB2f_U_RmD3irhzb3Y6iYGACLcBGAs/s1600/IMG_2083.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-NTSOND5qKKc/XSXC4cMaGjI/AAAAAAAAMag/SyXFdYlxNdkB2f_U_RmD3irhzb3Y6iYGACLcBGAs/s640/IMG_2083.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">The five of us girls (Man, that seems like a lot when I see it in writing - poor Travis) enjoyed a fun-filled week at Vacation Bible School.</span></div>
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<a href="https://1.bp.blogspot.com/-kCr30cNcSmg/XSXC4zGcGKI/AAAAAAAAMak/-WZJ6-sivc84Qj4pzDLibiQUWKQcDHGqQCLcBGAs/s1600/Merryn%2BLydia%2BLeanne%2BJosie%2BVBS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-kCr30cNcSmg/XSXC4zGcGKI/AAAAAAAAMak/-WZJ6-sivc84Qj4pzDLibiQUWKQcDHGqQCLcBGAs/s640/Merryn%2BLydia%2BLeanne%2BJosie%2BVBS.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">After her enthusiastic performances last year, Leanne has solidified a permanent spot on the music crew. It's the perfect job for her.</span></div>
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<a href="https://1.bp.blogspot.com/-7Ow0-GNhy2Y/XSXC5w9_Z-I/AAAAAAAAMas/cSBG1fWMGx0Z44_drIf9LR7RvyXh-l6SQCLcBGAs/s1600/VBS%2Bsinging.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-7Ow0-GNhy2Y/XSXC5w9_Z-I/AAAAAAAAMas/cSBG1fWMGx0Z44_drIf9LR7RvyXh-l6SQCLcBGAs/s640/VBS%2Bsinging.jpg" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I fell into my role as the official VBS photographer. Every night, I was scouring the neighborhood for props that I could use the following day, assaulting my neighbors with strange texts inquiring if they had any bricks, plastic swords, googles, or pharaoh costumes I could borrow.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And Biddy Boo closed out her introduction to ballet and tap dancing with an <a href="https://www.youtube.com/watch?v=JeE8uv7sqmY&feature=youtu.be">epic performance</a>. Travis' parents even crossed time zones to attend her recital! The costume and stage makeup made it worth all of those arduous Monday night dance classes, as far as Biddy was concerned. She shined on stage!</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">And that, my friends, is just a brief photo update. Daily adventures are documented on Instagram @CatfishWithKetchup. Stay tuned because we want to share some more Down syndrome specific content. Games, Flash Cards, and Social Stories - oh my! </span></div>
ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com2tag:blogger.com,1999:blog-1369867321501732562.post-23656029257568936602019-05-01T10:05:00.000-07:002019-05-01T10:37:18.661-07:00First Communion<div style="text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;">Sunday, April 28th at 9:30am mass, Josie and Merryn both received their First Communion. But this wasn't just an event that happened on that day. A year (arguably a lifetime) of preparation went into this monumental occasion. </span><br />
<a href="https://2.bp.blogspot.com/-05PU2vsMf_w/XMd-3ZcQbwI/AAAAAAAAMOA/b3mBlrgdt-cYdwUY4DFy8S732hNIvgJXgCLcBGAs/s1600/IMG_1616.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1250" data-original-width="1000" height="640" src="https://2.bp.blogspot.com/-05PU2vsMf_w/XMd-3ZcQbwI/AAAAAAAAMOA/b3mBlrgdt-cYdwUY4DFy8S732hNIvgJXgCLcBGAs/s640/IMG_1616.jpg" width="512" /></a><br />
<span style="font-family: "trebuchet ms" , sans-serif;">I remember the day I got the folder revealing the date of the girls' First Communion. A lump lodged in my throat. It's primary source was grief. Of all of the moments for Mama Hop to miss...this one was a punch in the gut.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The secondary source of my anxiety resulted from Josie's history with food refusals resulting from G-tube dependency (You can read more <a href="http://www.confessionsofthechromosomallyenhanced.com/2014/02/freedom-from-g-tube-dependency-part-1.html">HERE</a> and <a href="http://www.confessionsofthechromosomallyenhanced.com/2014/03/freedom-from-g-tube-dependency-part-2.html">HERE</a>). The host doesn't exactly taste like an Olive Garden bread stick. But we had time and a wealth of wonderful clergy, staff, and volunteers to help us figure it out.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Every Wednesday night, the girls, Leanne, and I load up and head to church for Faith Formation classes. Well, the girls go to class, Leanne volunteers in the nursery, and I man my prestigious bathroom post as hall monitor. That's right, Folks: they don't let just anyone sit on a chair outside the bathrooms and bark commands like "I think that's enough soap!" "Pick up that paper towel and throw it in the trash!" and "Stop loitering and get back to class!" This is how I serve the Lord.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">During Faith Formation, Josie is in class with the other second graders, aided by a wonderful associate named Brenda. Brenda is an OT by day and a loving mother of two lovely teenage girls: Allison and Nicole. These three have volunteered countless hours in our special needs ministry to help Josie and other children with special needs grow in their faith.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Josie learned the protocol quickly: Bow, "AMEN!" (perhaps the most enthusiastic one the walls of this stoic Catholic church have ever heard), and the sign of the cross. And with a little incentive like a mini Oreo, Josie even consumed the host. Hooray!!! Things were going well!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">...Until one day Josie decided she was done eating that host. In fact, it was during a dress rehearsal at our home that she gagged, coughed, and spit out the unconsecrated practice host! </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Just as Christ broke bread, gave it to his apostles and said, "Take this, all of you, and eat it: this is my body which will be given up for you," we celebrate communion because it nourishes God's life within us. WE DON'T SPIT JESUS OUT!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">In that moment, the grief, coupled with the g-tube PTSD, compounded by the pressure of the importance of this sacrament, left me paralyzed under the weight of crushing anxiety. I spoke to our incredible special needs ministry coordinator and she encouraged me to have faith. I tried. But it was SO hard when they brought in a Board Certified Behavior Analyst who is pursuing her PhD, who pulled out all the stops, and Josie still REFUSED to consume the host.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">But like I said, this was IMPORTANT. And too many beautiful souls worked too hard to facilitate Josie's faith journey to let it be betrayed over the rejection of a dry Styrofoam-tasting cracker. I asked if the priest could consecrate a Cheez It instead. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">That was a negative.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">So, I brought the girls home and drew from the most powerful weapon in my arsenal (besides God/faith, of course): STUBBORN. Yes, I know "stubborn" is an adjective but just go with it. Josie may have a whole extra chromosome full of STUBBORN, but Leanne does, too. And she just happened to leave a little extra in the womb for me to utilize on occasions like this. I was born for this!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">So we prayed. We read Josie's First Communion social story. We practiced. A lot. And I reflected back on those long days at the feeding clinic with Josie, excavated every technique stored in the dark corners of my memory, and I went to work.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> I got Josie to consume a piece of the host for me at the kitchen table using the same methods we employed to get her to learn to eat all food. But in Applied Behavioral Analysis, there's a concept called "generalization" in which a skill learned in one setting can be applied in other settings. Could we get Josie to generalize this skill? </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Josie successfully practiced with her sisters. She practiced with Aunt Leanne. She practiced with two different caretakers. And then it was time to practice with the priest.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Sweet Father Ray set aside some time on Saturday morning just for Josie. Jess, the incredible special needs ministry coordinator joined us with her adorable daughter. This was the moment of truth: would Josie consume the host in the church for the priest?</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">She did it! And we celebrated with Oreo's. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Sunday morning, we got out of bed and adorned Josie and Merryn in their traditional First Communion gowns and veils. My dear friend, Erin, came over and fixed their hair. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> They looked downright angelic. We headed off to church and met with the other first communicants, preparing to celebrate this holy sacrament. We took the customary aunt-gets-niece-in-a-headlock photo and then found our reserved seats in the pew.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">That morning was one of the most difficult mornings of my life, and it wasn't just because my Spanx were squeezing the life out of me. Josie was in a foul mood. She refused to stand up, sit down, and kneel, with the rest of the parishoners during mass. She even defiantly kicked the kneeler, somehow injuring her shin, and dissolved into tears. This wasn't looking good. The cheerful, compliant Josie that had shown up to practice with the priest just the day before, was replaced by a combative little diva in a white veil perched precariously on her blond head, where Dad had awkwardly shoved in back in after the 20th time Josie had yanked it out. I knelt in the pew with my hands clasped in white-knuckled prayer.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">JESUS TAKE THE WHEEL!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Communion time arrived and Merryn went first. She was beautiful. The moment was perfect. She beamed.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Then, it was Josie's turn. The special needs ministry director knelt next to the priest who held out a small piece of the host and said "Body of Christ."</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Josie paused. The seconds felt like an eternity from where I stood behind her. But that's not what Jess experienced from her vantage point. She said Josie gazed at the priest, she gazed at the host, then she gazed up at Jesus on the cross. Jess said an aura of light flanked Josie's head as the silent pause was pierced by a smile and an enthusiastic "AMEN!" Josie put the host in her mouth and took off.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">I took my communion, looked up, and saw Josie bolting for the exit, all the while crossing herself and faithfully saying "In the name of the father, son, and holy spirit..." I chased her down in front of a sea of amused faces and led her back to our pew. Then I cried.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; margin-left: 1em; margin-right: 1em;"><a href="https://1.bp.blogspot.com/-obwA6wv_jKc/XMekMbjTrMI/AAAAAAAAMOk/shvZTHMpkbIdzsIZzcNGjJ2sUr_DPA1mACLcBGAs/s1600/IMG_1638.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://1.bp.blogspot.com/-obwA6wv_jKc/XMekMbjTrMI/AAAAAAAAMOk/shvZTHMpkbIdzsIZzcNGjJ2sUr_DPA1mACLcBGAs/s640/IMG_1638.jpg" width="426" /></a></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">The tears wouldn't stop. I cried for my mom. I cried for the weight of the pressure. I cried for the gift of faith. I cried in thanks to God. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> I don't know if this is "normal" (I can't stand that word) or not, but one of my biggest emotional triggers in the wake of my mother's death has been the kindness of others. The reminders that I may be motherless but I am surrounded by loving people whose kindness humbles me beyond words. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">People like my mom's friend, Gale, who sent me a birthday card and a Starbucks gift certificate, which landed me in a heap of sobs on the floor. People like my mom's childhood friend, Karen, who sent Christmas gifts for the girls, knowing my mom wouldn't be there to do it. Church members like Brenda, Nicole, Allison, and Father Ray, who have walked this sacramental journey with us. People like this phenomenal woman:</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> For Jess, the special needs ministry position isn't just a job; it's a calling. She has a passion for facilitating opportunities for children with special needs to experience Christ. She adapts her approach to meet each child on his or her own faith journey. I'll never forget the first time she called me an invited us to attend Faith Formation. We had just moved and I was barely getting by on the last frayed nerve I had left. I explained to her that I was utterly overwhelmed with these little ones and could not commit to one more thing. She empathized in the most beautiful way and told me she would be there when we were ready. She kept in touch and made us feel like a part of the church in a way that no one else ever has. The church is a family and the magnitude of that is amplified beyond measure when you've lost very significant members of your own family.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">After mass, neighbors, friends, and complete strangers congratulated us. The benevolence was awe-inspiring. God's people were unified in His Love. Christ's light shown upon us. Mama Hop definitely joined in the celebration.</span></div>
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com8tag:blogger.com,1999:blog-1369867321501732562.post-33326625040871375082019-04-02T12:24:00.000-07:002019-04-02T12:24:15.698-07:00Mama Hop's Heavenly Birthday<div class="separator" style="clear: both; text-align: center;">
<span style="font-family: Trebuchet MS, sans-serif;">I've always had a minimalist decorating style. I'm not big on trinkets/knick knacks/tchotchkes. My home has even been referred to as "sterile" and I'm okay with that. This spills over to the exterior of our home. My friends have tried to convince me to paint our front door a fun and funky color but I won't do it. My neighbors have colorful chairs and planters on their porches. Ours is bare. I err on the side of neutral tones and "less is more." </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">So when Leanne came home talking about this angel she'd seen at a local garden center, I cringed a little. She said that since mom is an angel and since Saturday is her birthday, she wanted to buy it for her as a birthday gift. "Do we really buy birthday gifts for people who have passed away?" I asked. She insisted that we do, in fact, need to buy a birthday gift for mom.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I somehow convinced myself that it would be a small, flat paver with an angel carved on it and I figured we could probably hide it somewhere in a rock bed and I took her back so that she could show me.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Lo and behold, Leanne walked straight to the largest concrete angel in the display. This was not an obscure, flat paver, but rather a big, upright carving of an angel with elaborate butterfly wings, holding some sort of a bowl. I could easily picture it in a 90 year-old lady's garden but for the life of me, I couldn't imagine a way that it would fit in with the aesthetic of my home.</span></div>
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<i><span style="font-family: Trebuchet MS, sans-serif;">Just like when <a href="http://www.confessionsofthechromosomallyenhanced.com/2018/12/reconciliation-arson-and-visit-from.html">Merryn tried to burn the church down</a>, I could hear my mom's boisterous laughter from the heavens.</span></i></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I suggested Leanne find a paver with a nice little quote that reminded her of mom. She refused. I pleaded for her to pick one of the smaller, daintier angels. Her response: "No. Mom was big. She needs a BIG angel." (For the record, Mama Hop was quite petite, but anyone who stands next to Leanne is "big" by comparison).</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Then, I glanced at the price tag and almost lost my lunch: $110! One hundred and ten dollars for an enormous concrete angel to give to a deceased person for her birthday!</span></div>
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<a href="https://2.bp.blogspot.com/-J1mq6mz3XSg/XKOsbYaa7vI/AAAAAAAAMKw/eDSDBN6FIgQRzwxViFZC18JOKY2peIAngCLcBGAs/s1600/20190329_194925164_iOS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="750" data-original-width="1000" height="480" src="https://2.bp.blogspot.com/-J1mq6mz3XSg/XKOsbYaa7vI/AAAAAAAAMKw/eDSDBN6FIgQRzwxViFZC18JOKY2peIAngCLcBGAs/s640/20190329_194925164_iOS.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> Not knowing where in the heck we were going to put this thing, I conceded, "Okay. Fine. Bring it over to the cash register so we can pay for it." She tried to lift it and made this face:</span></div>
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<a href="https://4.bp.blogspot.com/-Mmjz4-1jCVk/XKOsbYEOFxI/AAAAAAAAMKs/hAXS3D3-ttkjMaxuh84YNq43G_qDs1TgQCLcBGAs/s1600/20190329_194945541_iOS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="1333" data-original-width="1001" height="640" src="https://4.bp.blogspot.com/-Mmjz4-1jCVk/XKOsbYEOFxI/AAAAAAAAMKs/hAXS3D3-ttkjMaxuh84YNq43G_qDs1TgQCLcBGAs/s640/20190329_194945541_iOS.jpg" width="480" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> Thankfully, the nice man at the garden center wrapped it in burlap and shoved it in the back of my vehicle. When I got home, the expression on Travis' face basically echoed mine when I first laid eyes on it and he said "<i>That </i>is what she's been talking about all this time?" I said, "Yep." He said, "Couldn't she choose something smaller?" I said, "Apparently not." So he hauled it around the back of the house, per Leanne's directive.</span></div>
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<a href="https://3.bp.blogspot.com/-FWd-n6zwoD0/XKOsbYHVvCI/AAAAAAAAMKo/w48XIgTeAXMXl9U_HLb-0GQCz7gGi1legCLcBGAs/s1600/IMG_1476.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://3.bp.blogspot.com/-FWd-n6zwoD0/XKOsbYHVvCI/AAAAAAAAMKo/w48XIgTeAXMXl9U_HLb-0GQCz7gGi1legCLcBGAs/s640/IMG_1476.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> She wanted it placed outside her bedroom window so that she could open her blinds and admire it daily. She showed him exactly what she had in mind and he adjusted it until it met her approval.</span></div>
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<a href="https://2.bp.blogspot.com/-V8Yw0RcjRq4/XKOsbyFtT5I/AAAAAAAAMK0/tBsi6sS0oLYg3UYhBCw1F87q-7vQwjG_QCLcBGAs/s1600/IMG_1481.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://2.bp.blogspot.com/-V8Yw0RcjRq4/XKOsbyFtT5I/AAAAAAAAMK0/tBsi6sS0oLYg3UYhBCw1F87q-7vQwjG_QCLcBGAs/s640/IMG_1481.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;"> Then, it was time to sing:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/GdheWz4c9PA" width="480"></iframe></span></div>
<span style="font-family: Trebuchet MS, sans-serif;">My mom shared her birthday with her best friend's husband, Jay, and they always celebrated together. So Leanne sang to Mom and Jay. I sent the video to her best friend and he responded, "Your mom is either crying or cussing because you wasted $110. LOL!" Truer words have never been spoken.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Then, Leanne knelt down and embraced the angel, whispering words of love to Mama Hop. In that moment, I knew the angel was worth every penny.</span></div>
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<a href="https://1.bp.blogspot.com/-hFG5vrjoNjM/XKOscG4O48I/AAAAAAAAMK4/nslFsPoXHY4RTcr9b23cb3jm8_AneSSDACLcBGAs/s1600/IMG_1485.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-hFG5vrjoNjM/XKOscG4O48I/AAAAAAAAMK4/nslFsPoXHY4RTcr9b23cb3jm8_AneSSDACLcBGAs/s640/IMG_1485.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I quickly warned her that purchasing concrete monuments cannot be an ongoing birthday tradition or else my backyard will resemble a cemetery within a decade. Leanne agreed to planting flowers going forward.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">She went inside to admire the view from her room and she seemed rather pleased.</span></div>
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<a href="https://4.bp.blogspot.com/-UzWUhrsOWiE/XKOsdh_HFyI/AAAAAAAAMLE/IZBTd_D6LOkmth7JjUwEIfj61PwfTJcPQCLcBGAs/s1600/IMG_1492.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://4.bp.blogspot.com/-UzWUhrsOWiE/XKOsdh_HFyI/AAAAAAAAMLE/IZBTd_D6LOkmth7JjUwEIfj61PwfTJcPQCLcBGAs/s640/IMG_1492.jpg" width="426" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Then, we added one final touch and she grinned from ear to ear...</span></div>
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<a href="https://3.bp.blogspot.com/-NaS13T77j4s/XKOsdEz5ObI/AAAAAAAAMLA/Rk75OsEWszQfZ5nwuk8upwhYa9YCHQ3iACLcBGAs/s1600/IMG_1491.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://3.bp.blogspot.com/-NaS13T77j4s/XKOsdEz5ObI/AAAAAAAAMLA/Rk75OsEWszQfZ5nwuk8upwhYa9YCHQ3iACLcBGAs/s640/IMG_1491.jpg" width="640" /></span></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Happy Birthday, Mama Hop. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif; margin-left: 1em; margin-right: 1em;"><a href="https://3.bp.blogspot.com/-BEEa2AWapew/XKOscrl3O9I/AAAAAAAAMK8/0XIENpxSGA0UJcSEyhik6ODvNLciXDw6QCLcBGAs/s1600/IMG_1487.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1500" data-original-width="1000" height="640" src="https://3.bp.blogspot.com/-BEEa2AWapew/XKOscrl3O9I/AAAAAAAAMK8/0XIENpxSGA0UJcSEyhik6ODvNLciXDw6QCLcBGAs/s640/IMG_1487.jpg" width="426" /></a></span></div>
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<span style="font-family: "Trebuchet MS", sans-serif;">We will continue to celebrate you and the loving memories that you left with us.</span></div>
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<a href="https://1.bp.blogspot.com/-cf_usTgW9KE/XKO1S32jJvI/AAAAAAAAMLg/jC-2n6lq7jclkXFkoX0AMEB0qDmaK7WRgCLcBGAs/s1600/20190330_230917230_iOS.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="800" data-original-width="1000" height="512" src="https://1.bp.blogspot.com/-cf_usTgW9KE/XKO1S32jJvI/AAAAAAAAMLg/jC-2n6lq7jclkXFkoX0AMEB0qDmaK7WRgCLcBGAs/s640/20190330_230917230_iOS.jpg" width="640" /></a></div>
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<br />ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com9tag:blogger.com,1999:blog-1369867321501732562.post-26909264311791176562019-03-29T09:55:00.001-07:002019-03-31T15:37:14.676-07:00Josie Turns Nine! <div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;">March 28th may not be a national holiday but it's a VERY special occasion at our house. It's the day we celebrate Josie's entrance into the world. It's hard to believe that we've been celebrating that day for <b>nine</b> years now. Our sweet and sassy little JoJo is growing up quickly and her maturity is becoming more and more apparent all the time.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">My mom always said that the first eight years are the most difficult with Down syndrome. She assured me that after that, health problems would start to subside and maturity would start to kick in and we'd be hitting our stride. Well, I've seen evidence of that already. Josie handled her winter health battles (Influenza A and walking pneumonia) without oxygen and hospitalization. Her chronic runny nose was not nearly as bad this year. And what I like to call her "get it quotient" is on the rise. She is coming up with new things constantly that demonstrate that she's tuned in and understanding more. </span></div>
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<a href="https://1.bp.blogspot.com/-13AFwMhBTR4/XJ5F0Z1ym3I/AAAAAAAAMHA/WkxEvysKbeQZQ2bFArTvNI2sFl8Al2DhwCLcBGAs/s1600/IMG_1409.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-13AFwMhBTR4/XJ5F0Z1ym3I/AAAAAAAAMHA/WkxEvysKbeQZQ2bFArTvNI2sFl8Al2DhwCLcBGAs/s640/IMG_1409.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> Yesterday, Josie was celebrated both at home and at school. Her sweet second grade teacher sent me precious photos of Josie passing out cupcakes to her classmates. Josie came home with a backpack full of notes containing sweet birthday wishes from her friends. After school, we headed straight to the Mexican restaurant that Josie chose and we had dinner together.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Upon arriving home, YaYa and Papa called us on Facetime so that they could join in the celebration from their home in another state. Isn't technology wonderful?!</span></div>
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<a href="https://4.bp.blogspot.com/-KbUrQYZd-bs/XJ5F0eMxYxI/AAAAAAAAMHE/6LWIim4LKhYkYv5iPQKjMPL4SDQtHH8kwCLcBGAs/s1600/IMG_1447.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://4.bp.blogspot.com/-KbUrQYZd-bs/XJ5F0eMxYxI/AAAAAAAAMHE/6LWIim4LKhYkYv5iPQKjMPL4SDQtHH8kwCLcBGAs/s640/IMG_1447.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> When we asked Josie what she wanted for her birthday, she offered only one response: cake! Girlfriend loves cake so Mama happily paid a visit to our local Dairy Queen and got Josie a delicious ice cream cake.</span></div>
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<a href="https://2.bp.blogspot.com/-cB6LBaIbK6s/XJ5F0fg9UGI/AAAAAAAAMHI/X9ixMqZWnh0MLY7boFd86FdJAGYb7uS5gCLcBGAs/s1600/IMG_1450.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://2.bp.blogspot.com/-cB6LBaIbK6s/XJ5F0fg9UGI/AAAAAAAAMHI/X9ixMqZWnh0MLY7boFd86FdJAGYb7uS5gCLcBGAs/s640/IMG_1450.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> Josie also loves being serenaded; perhaps as much as she loves cake. Her face just lights up when we sing to her!</span></div>
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<a href="https://4.bp.blogspot.com/-EUENRQYjmB0/XJ5F0267NLI/AAAAAAAAMHM/Kp2E_77cRx8mM4zmIcx5PxnoBhZ5xdb_gCLcBGAs/s1600/IMG_1451.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://4.bp.blogspot.com/-EUENRQYjmB0/XJ5F0267NLI/AAAAAAAAMHM/Kp2E_77cRx8mM4zmIcx5PxnoBhZ5xdb_gCLcBGAs/s640/IMG_1451.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> Several years ago, Josie reached out and touched the lit candle on her birthday cake and mildly burned herself. Merryn was more traumatized than Josie was. Ever since, Merryn keeps a snug embrace on Josie whenever she's in the presence of lit candles. That's why we call her "Mother Hen." </span></div>
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<a href="https://4.bp.blogspot.com/-C_3BOG4V2fo/XJ5F1ez09RI/AAAAAAAAMHQ/23Zq6LoWZrckSLom0D5P62lnVqmyo4lDgCLcBGAs/s1600/IMG_1452.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://4.bp.blogspot.com/-C_3BOG4V2fo/XJ5F1ez09RI/AAAAAAAAMHQ/23Zq6LoWZrckSLom0D5P62lnVqmyo4lDgCLcBGAs/s640/IMG_1452.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> The close monitoring of an overprotective little sister is superfluous in light of Josie's aforementioned "get it quotient;" she knew exactly what to do! </span></div>
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<a href="https://4.bp.blogspot.com/-opMtkmHxVUc/XJ5F1vi7RzI/AAAAAAAAMHU/KMhvLhDUdt4y82BMA-1937zhSXY57VeUACLcBGAs/s1600/IMG_1453.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://4.bp.blogspot.com/-opMtkmHxVUc/XJ5F1vi7RzI/AAAAAAAAMHU/KMhvLhDUdt4y82BMA-1937zhSXY57VeUACLcBGAs/s640/IMG_1453.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> She took a deep breath and blew hard until each and every candle was extinguished!</span></div>
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<a href="https://4.bp.blogspot.com/-jg-YCRpxD_c/XJ5F2MektiI/AAAAAAAAMHc/uCOY8ey9ojEu-ht7jajHjRBil9Wj1mE4wCLcBGAs/s1600/IMG_1454.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://4.bp.blogspot.com/-jg-YCRpxD_c/XJ5F2MektiI/AAAAAAAAMHc/uCOY8ey9ojEu-ht7jajHjRBil9Wj1mE4wCLcBGAs/s640/IMG_1454.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> The next photo is a little blurry but the expression of exhilaration on Josie's face is too contagious not to share.</span></div>
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<a href="https://3.bp.blogspot.com/-qRGkuVkLEmc/XJ5F2rTM67I/AAAAAAAAMHY/SwUGqLj8UecBuZljPstAOlPg6uOZc_l4wCLcBGAs/s1600/IMG_1457.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://3.bp.blogspot.com/-qRGkuVkLEmc/XJ5F2rTM67I/AAAAAAAAMHY/SwUGqLj8UecBuZljPstAOlPg6uOZc_l4wCLcBGAs/s640/IMG_1457.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> We got started opening gifts. YaYa and Papa gave Josie some snap together letters so that she can practice both fine motor skills and spelling (and activity that she loves and excels in).</span></div>
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<a href="https://1.bp.blogspot.com/-KnG8ftKYWns/XJ5F3Lg775I/AAAAAAAAMHg/yXctqUiGAvokxp48EZ5a59wr8O4ckvWsQCLcBGAs/s1600/IMG_1464.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-KnG8ftKYWns/XJ5F3Lg775I/AAAAAAAAMHg/yXctqUiGAvokxp48EZ5a59wr8O4ckvWsQCLcBGAs/s640/IMG_1464.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"> Leanne selected a singing hen from Hallmark that sings "It's springtime and I know it" to the tune of LMFAO's "Sexy and I know it" while laying eggs. Josie became instantly obsessed. Way to go, Aunt Leanne! </span></div>
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<a href="https://1.bp.blogspot.com/-G8DFv0XJKiE/XJ5F3eXnYOI/AAAAAAAAMHk/08i3ziGGbzcSzL1GwrrxVeGv9AgBkpwjQCLcBGAs/s1600/IMG_1473.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://1.bp.blogspot.com/-G8DFv0XJKiE/XJ5F3eXnYOI/AAAAAAAAMHk/08i3ziGGbzcSzL1GwrrxVeGv9AgBkpwjQCLcBGAs/s640/IMG_1473.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">There were more fun and educational gifts to come thanks to Mom's Lakeshore Learning haul. We can't wait to dive in and explore! </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Special thanks to everyone who offered up birthday wishes to Josie via social media. We're glad that you appreciate watching her grow into the feisty and independent little girl who makes us so proud.</span></div>
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<a href="https://2.bp.blogspot.com/-4TxM9fopY68/XJ5MJ5Jcp9I/AAAAAAAAMIE/PLepdyB-QFEyQWuQd_glKlOeAJ9YYfdXQCLcBGAs/s1600/IMG_1372.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" data-original-height="667" data-original-width="1000" height="426" src="https://2.bp.blogspot.com/-4TxM9fopY68/XJ5MJ5Jcp9I/AAAAAAAAMIE/PLepdyB-QFEyQWuQd_glKlOeAJ9YYfdXQCLcBGAs/s640/IMG_1372.jpg" width="640" /></span></a></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Happy Birthday, Josie!</span></div>
ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com1tag:blogger.com,1999:blog-1369867321501732562.post-36375547776378804402019-03-21T06:46:00.000-07:002019-03-21T06:46:03.970-07:00World Down Syndrome Day 2019<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Trebuchet MS, sans-serif;"><b>3/21| March 21st</b></span></h2>
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<span style="font-family: Trebuchet MS, sans-serif;">Down syndrome is a condition characterized by a third copy of the 21st chromosome so it only makes sense that on the 21st day of the 3rd month of the year, we celebrate World Down Syndrome Day. It is a global day of awareness, observed by the United Nations. It's a day in which we celebrate our loved ones with Down syndrome. We advocate for their rights to education, healthcare, and inclusion.</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Today (and every day) we celebrate Leanne and Josie and the profound impact that they have had on our lives. They have enriched our world with sincerity and love. They have taught us valuable lessons far beyond what we can learn in school. They have made us better people and for that, we are eternally grateful. </span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">Happy World Down Syndrome Day!</span></div>
ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com0tag:blogger.com,1999:blog-1369867321501732562.post-47525421680201265242019-03-02T04:44:00.000-08:002019-03-02T04:44:00.918-08:00Serenity: Another Leanne Update <div class="separator" style="clear: both; text-align: center;">
<span style="font-family: "trebuchet ms" , sans-serif;">The other day, I overheard Leanne self talk:</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><i><b>"Mom passed away. She's in a better place. God needed her. I'm in a better place, too. Sister needed me."</b></i></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Such a simple justification for the profound loss that she faced, and yet spoken with such peace. It also underscored the importance of her self image as that of a contributor upon whom this family relies. God needed mom so she had to answer that call. I needed Leanne, and she has dutifully and proudly come to help me.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">While my mom was alive, Leanne's primary role was that of a daughter. Sure, she was a friend, a neighbor, a sister, and an aunt; but those were secondary roles. Upon my mom's passing, she recalibrated her identity; her primary role is now sister/aunt. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">The tranquility of this transition is what continues to astound me. It's as though she looks at the situation and asks herself, 'what is my purpose?' Then she rises to the occasion and proceeds to fulfill her role to the very best of her ability.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Aided by her unwavering faith, Leanne has a gift of serenity. </span><span style="font-family: "trebuchet ms" , sans-serif;"> Yesterday is gone. It's not forgotten, but it's not dwelled upon. Tomorrow will come, but no energy is spent worrying about what trials it may bring. Today, in this moment, Leanne is focused on being as purposeful as she can. Her personal fulfillment is found in offering love and support to those around her. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Watching her navigate life and loss with such poise and faith has both inspired and humbled me. And sometimes that alone, is a grief trigger.</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif; text-align: center;">The other night, I was in h</span><span style="font-family: "trebuchet ms" , sans-serif; text-align: center;">er room and she showed me the display Valentines cards she had offered to our mom and I crumbled. It took me days to excavate the strength to write this post. But I've always said that Leanne has been my greatest teacher and this is a perfect example of that:</span></div>
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<span style="font-family: Trebuchet MS, sans-serif;">It called to mind "The Serenity Prayer." Most of us know the first verse:</span><br />
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<i><span style="font-family: Trebuchet MS, sans-serif;">God, </span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">Grant me the serenity;</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">To accept the things I cannot change;</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">The courage, to change the things I can;</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">And the wisdom, to know the difference.</span></i><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But the prayer continues...and this is the part that really resonates with me when I think of how Leanne has handled our mom's passing:</span><br />
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<i><span style="font-family: Trebuchet MS, sans-serif;">Living one day at a time; </span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">Enjoying one moment at a time; </span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">Accepting hardships as the pathway to peace;</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">Taking, as He did, this sinful world</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">As it is, not as I would have it;</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">Trusting that He will make all things right</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">If I surrender to His Will;</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">So that I may be reasonably</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">happy in this life</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">And supremely happy with Him</span></i><br />
<i><span style="font-family: Trebuchet MS, sans-serif;">Forever and ever in the next.</span></i><br />
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<span style="font-family: Trebuchet MS, sans-serif;">During the past eight years, a common message has repeatedly surfaced on this blog: a person's value is not determined by his or her IQ score.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://www.confessionsofthechromosomallyenhanced.com/2013/11/the-story-travis-didnt-want-me-to-share.html">The Story Travis Didn't Want Me to Share</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://www.confessionsofthechromosomallyenhanced.com/p/down-syndrome-has-been-part-of-my-life.html">Living with Down Syndrome</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Experiencing death and bereavement with Leanne has further reinforced this message for me. She has so much to teach and I have so much to learn. And I am forever grateful for the experience of having her in my life.</span><br />
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ENhttp://www.blogger.com/profile/15115633833156891768noreply@blogger.com3