Wednesday, March 28, 2018

Happy 8th Birthday, Josie!

Eight years ago today, this world lit up when Josie arrived in it.  She continues to radiate sunshine in our lives.  

Josie,
You are our dream come true!  You amaze us with your intelligence, sincerity, humor, and fun-loving disposition.  You've recently shown great pride in becoming independent and we are incredibly proud of you.  Happy Birthday, Josie JoJo.  You are a gift.
Love,
Your Family

Tuesday, March 20, 2018

Using Visual Aids to Promote Independence

Show of hands: Who here finds getting small children dressed and out the door in the morning a leisurely and pleasurable experience?  
...Anyone?
Well, we're right there with you.  Throw in a child with a whole extra chromosome chalked full of stubborn and the strongest coffee in the world can't prepare you for the battle that can ensue.  But here's an idea that may help:

Create a visual aid to illustrate the morning routine.

Research suggests that individuals with Down syndrome learn more effectively when information is presented visually: with pictures, objects, or gestures.  (Source)  In a previous post on behavior, we addressed how defiant or stubborn behavior may just be the child's way of communicating "Whoa!  I don't understand what's going on and I don't like the feeling of being rushed.  I'm confused and uncomfortable with this!"  (To read that post, click HERE).

One way we can make a child with Down syndrome more comfortable, and ideally minimize negative behaviors in the process, is to create a routine and to add a visual aid.  Back in 2015, CCE had a post entitled "Simple Secrets to Helping a Child with Down Syndrome Achieve Therapy Goals"  where Josie was pictured with her "Josie Gets Dressed" chart.  
We have since retired the chart because Josie no longer needs the visual breakdown of the steps to ensure that she gets dressed properly.  So I shoved it behind her dresser.  BUT, sometimes when a routine is thrown out of whack by say, a daylight savings time change or Spring Break, it helps to go back to the basics and have a refresher course so that we can get back on track.  Hence, we're revisiting the "Josie gets dressed" chart.  This chart was very simple to make.
 Materials: 

  • A piece of foam board (or original chart was made out of poster board and it didn't hold up well)
  • A Sharpie
  • Pictures of your child doing each step (or little illustrations you can search for on Google Images or here)
  • Velcro Fasteners (you can buy it by the roll or get peel and stick tabs like this
  • ** Bonus points if you laminate the photos for durability.  (This $30 one is similar to the laminator I use) 
I tried to use as few steps as possible so I didn't overwhelm Josie.  I numbered them in the order that she should complete them.  Once each step is completed, she moves the picture down to the "All Done" box.  She finds this process of moving the pictures very gratifying.

Now, I have always been a huge fan of the visual aid.  Throughout Josie's youth, I've made too many visual aids to count.  But I never truly experienced the MAGIC of a visual aid until I made one for using the toilet.  This simple little chart was a GAME CHANGER in terms of Josie's independence with toileting.
 I have one posted in the playroom bathroom, and one in the bathroom that adjoins Josie's room.  Since creating this chart, Josie's independence has soared and she takes great pride in handling restroom trips without prompting or help.  In fact, you'll hear her yell, "Good job, Independent Girl!!!"  from across the house and you know she's successfully relieved herself.  The built in praise is always a good idea when it comes to visuals!

And to all of my technology averse friends out there, this part is for you: You don't need impressive computer skills.  You don't need to be a genius photographer.  You can draw a chart.  CLICK HERE to see how Mama Hop makes charts.  So you're not an artist.  The child doesn't care.  Josie loves a good singalong.  She could care less if your singing sounds like a cat howling in a rain storm.  So pick up a pencil and do your best.  

Oh and the fancy camera part - highly unnecessary.  You can take pictures with your phone.  Even if you don't know how to get the picture off of your phone, here's what you do: You go to Walgreens, Costco, or any place that develops photos and you hand the photo lab employee your phone.  They can retrieve the photos and print them for you.  True story - I confirmed it!  

One more embarrassingly simple tip: Google it!  So you're not an artist and you're not a techie but you need a visual aid to help your child learn to use the restroom.  Google: "Visual Aid for Toileting."  Click on the "Images" tab and print!

One last thing:  While this blog tends to address Down syndrome, as that's what we deal in around here, the visual aid can be a helpful tool for ANY child with ANY diagnosis or lack thereof.  The way I see it, it can't hurt.  So try it!  Please leave any additional ideas or success stories in the comments below.

Friday, March 9, 2018

Aunt Leanne's Visit

We recently had the pleasure of hosting Aunt Leanne for an entire week while Mama Hop sought out some well deserved R&R in the Florida sun.  It was, perhaps, our best visit ever!  Every day mundane activities seemed to sparkle with Leanne's enthusiastic company.
As we've come to expect from her visits, hilarious memories were created by Leanne's unpredictability and candor.  Shortly after she arrived, Leanne told me she was thirsty.  I told her to help herself to whatever she could find in the fridge; there was plenty of bottled water, flavored water, Powerade...so it took me by surprise when Leanne found me and told me that she really liked that orange slushy that was in the fridge.  I said "Orange slushy?  What orange slushy?"
"Yeah, that says 'shandy'; I had a hard time saying it...is that a healthy kind?"

I'd forgotten all about those orange shadys that I'd been hoarding since summer.  They come in a variety pack and orange is my favorite flavor.  My neighbors even saved their orange ones for me.  But I guess a sibling's fundamental purpose is to teach us how to share, right?

Oh but Leanne earned those Leinenkugels that she helped herself to by assisting me with many of my mom jobs throughout the week including getting kids dressed and off to school, tidying up toys, preparing meals, cleaning up messes after meals, wiping snotty noses, volunteering at school and church, etc...
There's a vindication in having someone else walk in your shoes and realize that even though you consider yourself a halfway responsible person who has her act together, makes plans, and sticks to schedules, when kids are brought into the mix, the best laid plans sometimes fall apart.  Take, for example, the morning Leanne tried to help Biddy make her bed.  In Leanne's eyes, it was an innocent gesture from a considerate aunt.  To to a headstrong three year-old in search of independence, it was a rage-inciting insult.  CLICK HERE if you missed it.
Oh but there were other parts of the day when Biddy and Leanne made the most cohesive team.  They read books together, played hide & seek, and even enjoyed a picnic in the park while the other kids were at school.

But it wasn't just the baby of the family who benefited from the company of a doting aunt.  There were many sweet moments that we've come to expect from Leanne and Josie.  These two have a bond that no one else can truly relate to. 

One morning after school drop off, Leanne turned to me and asked, "Are you jealous?"  I said, "Jealous?  Of what?"  She replied, "Of me and JoJo.  She loves me.  She loves to hug me!"  I said, "No, I'm not jealous of you and JoJo; I think it's great!"  She crinkled up her nose and angrily refuted, "Then why did you tell us to stop hugging this morning?"  I said, "Because she had to go to school, Leanne!"  Sheesh!  Someone has to break up the love fest every once in awhile or we'd never get anything done around here!  LOL!

Oh but it's amazing how productive we were.  The week was so busy, the time just flew by. 
Leanne accompanied us to Faith Formation at church.  We dropped the girls off in their respective classrooms and found our post where I serve as hall monitor every week.  And yes, it's just as hostile and intimidating as it sounds; there will be no noise, running, nor loitering in the hallways on my watch.  Jesus has authorized me with the authority to keep the church safe and orderly...
But on the rare occasion that there's downtime from the intense fury worthy of a "Law & Order: The Hall Monitor" spin off, or when I have an extra set of hands like Aunt Leanne, we may take on other work.  This past week, Leanne sharpened so many pencils for the special needs ministry coordinator, it will be Advent season before they have to reach for that pencil sharpener again.  And Leanne was so darn proud of her work!  It was truly a privilege for her to feel like she could make a purposeful contribution. 
  After lending her time and talents at church, Leanne was eager to do it again at Josie's school.  It happened to be Dr. Seuss week and the theme of the dress code that day was "Oh! The places you'll go!"  Josie was supposed to dress like what she wanted to be when she grows up.  She dressed like Aunt Leanne.
Leanne and I read "The Wocket in my Pocket" and afterward, the kids worked on rhyming the word "wocket" and creating their own Dr. Seuss inspired "wocket" creatures.  We had tons of fun with all of those curious and creative first graders!
And after a fast-paced week of taking care of kiddos and everything required to make the household function, Friday rolled around and Travis and I decided to take Leanne out to relax and unwind.  We dined at our favorite Mexican restaurant and then embarked upon one of Leanne's favorite past times: karaoke.

Some may recall a story I've shared about how Leanne got a karaoke machine as a child.  Every morning, before school, and every evening when she got home from school, Leanne would haul that karaoke machine out to the front porch, plug it in, and serenade the neighborhood from her potted-geranium-and-welcome-mat flanked "stage."  Her passion for this hobby was so intense that my parents had to impose restrictions about how early Leanne could start and when she needed to wrap it up for the night.

I was a little surprised to see how much Leanne has upgraded her show to include lots of confident hair tossing and some really, um, enthusiastic choreography:
I was expecting the old vaudeville stage hook to appear at any minute.  But no one seemed offended by Leanne's inclination to shake what her mama gave her.  

I don't know if Leanne wants me to share this part or not but she met another gentleman that night.  He also happened to have an extra chromosome.  He was all dressed up in a sweater vest and bow tie and he gave a finely tuned, albeit, more conservative performance.  Afterward, Leanne went up and complimented him on his performance.  I couldn't hear what was said from where I sat but I saw an enthusiastic hug.  Later, the gentleman came over and introduced himself to Travis and I and he told Leanne that she's pretty.  A smart guy knows a good thing when he sees it!  

Overall, it was a really incredible week.  It was so much fun that I asked Mama Hop for one more day with Leanne.  We needed a day to just relax, enjoy each other's company, and drink "orange slushies" while coloring.  
Aunt Leanne, please come back soon!  Stay as long as you want.  We absolutely loved having you here!






Saturday, February 3, 2018

A Life With Down Syndrome Is A Life Worth Living

Here at Confessions of the Chromosomally Enhanced (CCE), we like to keep the discussion honest, but positive.  There is plenty of negativity out there about Down syndrome and we certainly don't need to contribute to it.  As a subcategory of "mommy bloggers," complaining about one's children, expressing regret, or sharing private moments with the public are all areas of concern, regardless of the extra chromosome.  It's a line we must be very cognizant of, as our children will someday be able to read these words.

Fortunately for me, Down syndrome had such a positive impact on my life that keeping the discussion optimistic is not difficult.  As a parent of a young child with Down syndrome,  I know that my challenges are temporary because I see how my sister has grown into a kind, considerate, and mature adult.  
 That doesn't mean that I shy away from documenting the hard stuff, too.  I've discussed everything from Josie's open heart surgery, to her chronic lung disease, her G-tube and subsequent struggles to eat orally, right down to her behavior issues.  But the aforementioned issues are not universal to all kids with Down syndrome; those were just Josie's struggles.  And despite the fact that Josie has had significant health challenges, I would do it all over again, happily, because the joy she has brought to our family substantially overshadows the hard times.  Besides, as mothers, we are here to offer unconditional love.  Should any of my other children acquire a health issue or disability later in life, I would see them through it without hesitation.  
 This blog has addressed current issues pertaining to Down syndrome including how Chinese researchers are seeking a cure for Down syndrome and how Iceland is striving towards eradicating Down syndrome through prenatal detection and subsequent termination.

 So when an Instagram follower sent me a link to this video, I was immediately moved and inspired to share it (Thank you, Abigail S.).


(You can read his speech HERE).

Frank Stephens says, "I am a man with Down syndrome and my life is worth living."  In this speech in October 2017, Frank is testifying before congress, appealing for NIH funding for Down syndrome research.  He makes three powerful points: 

1.  People with Down syndrome are a medical gift to society because they hold the key that open doors regarding cancer research, Alzheimer's, and immune system disorders.
2.  A Harvard-based study has determined that people with Down syndrome and their families report significantly higher levels of happiness than the general public.
3.  Given the aforementioned points, people with Down syndrome can truly allow Americans an opportunity to carefully consider the role eugenics plays in our society, and how we choose which humans are worthy of a chance at life.


To read NPR's article "People With Down Syndrome Are Pioneers In Alzheimers Research," click HERE.

Did you know that abnormal protein deposits associated with Alzheimer's are found on the 21st chromosome?  

To parents who are learning this for the first time, don't fear.  The National Down Syndrome Society published an article that states: 

https://www.ndss.org/resources/alzheimers/
Besides, with the research happening now, the Down syndrome population may lead to the discovery of a drug that will identify and prevent the development of Alzheimer's not only for people with Down syndrome, but for the public at large.

As Frank Stephens says, "I don't feel like I should have to justify my existence..." and he's right.  We are all created in God's image and every human being is worthy of basic human dignity.  The people with Down syndrome in my life have taught me more about love; how we are called to love and what it looks like to truly love unconditionally.  They have flooded my world with vibrancy and joy.  That's why it feels so good to be able to share them with you; it's an experience you should seize and absorb.


Leanne and Josie, life is truly better with you.

Monday, January 29, 2018

Christmas 2017: It's Cool to be Different


Greetings, Blog Followers!  Last night, after we got the kids in bed, I must have figured out the magic number of times to nag Mr. Technology (A.K.A. Travis/husband/dad) to get him to tackle this Photoshop mess with me, because he was suddenly moved to help me.  Maybe it was the added guilt trip about how he was leaving town the next day, and this is the only parting gift I wanted.  But since he insisted I embrace new technology, which resulted in endless frustration and blog negligence, I insisted he help me.  Here's what I learned about Adobe Photoshop: 

1.  It's not intuitive - this ain't no iphone, Folks.  It's not designed to just pick up and click around and have it figured out within moments.  
2.  Even technology experts get frustrated - granted, Travis' area of expertise has nothing to do with photo editing nor the arts in the general, but he "gets" computer function a whole lot better than I do.  He's been exposed to a whole lot more terminology than I have.  He can build a computer from scratch.  He can write code and program apps and do all sorts of fancy things.  Guess what: he still couldn't understand how to get that ridiculous watermark symbol to appear in Photoshop.  
3.  I'm not as helpless as I thought I was - Hey, I tried.  I did.  I watched the tutorials online, asked friends, and spent HOURS playing with the software.  I'm no computer expert but I suspect I'm above average at many programs.  I've got no problem researching techniques and troubleshooting issues.  And when I saw him do everything I had already done and still sit there like this...
You know what I see when I look at this photo?  Vindication.  Sweet vindication.  I'm right, you guys - it's hard!!!  Alas, we figured it out.  He did it, then he showed me how to do it.  I practiced doing it one more time.  And here you go...
Why does this matter so much to me?  Because I've had too many photos lifted from the blog and paired with a web article that I did not write; nor do I agree with.  And let me tell you, having your intellectual property taken and used to represent a viewpoint that you do not endorse is frustrating as H-E-double hockey stick.  

Granted, I realize that adding a watermark to my images won't necessarily stop future copyright infringement; but it makes me feel like I'm being proactive and completing my due diligence to deter it.  

While we're celebrating accomplishments, can we just take a moment to appreciate that it's still January (for a couple more days) and the Christmas photos are posted!  Woo Hoo! 
There was a time in my life when this would have happened within 48 hours of said photos being taken, but life has changed.  Its hectic.  So now, we celebrate one month.  
YaYa, Papa, Uncle Corey, Aunt Sarah, and Cousin Abby all joined us at our house to celebrate Christmas.  
And as crazy and stressful and busy the holiday season is, the magic of seeing these little faces light up makes it all worth it.
I wasn't planning on doing Christmas cards this year because between holiday decorating, holiday shopping, holiday parties, hosting Christmas, a husband who travels quite a bit, and the steady stream of illness that seems to invade the house during cold/flu season with three small children, the prospect of mailing out 60+ cards seemed like a less-than-sane task to add to the "to do" list.  But Merryn is quite the traditionalist and she was very upset with me when she heard about my bah-humbug stance on holiday cards.  So, she begged and pleaded and offered to do everything - write every card, address every envelope, update the address list.  And I caved.  Because Merryn loves her traditions and I love Merryn.
If you didn't get one, please don't be disappointed.  A six year-old handled the project.  If yours was addressed to the wrong person, once again, a six year-old handled the project.  If yours had food stains on it, a six year-old handled the project.  Consider it extra holiday cheer.
Random subject change but I'll try and tie it all back; bear with me.  I recently received a message from an Instagram follower and it was so sweet, I want to share it:

I've been following you for a long time now and I know I've told you before but you are an amazing mother and sister and an inspiration.  And you make it okay and even cool for people to be different and that is so awesome and keep inspiring people with your Insta(gram) because you are making people living with a disability (and I don't want this to come off as mean or ignorant) but making it okay.  Just showing people the everyday in and out struggles and success of life, it makes everything relatable.  Because we all have struggles and it shows us that we are all the same.  Just thought you should know you're doing an amazing job.
 The author of this comment moved me with her heartfelt words because sometimes I don't even realize this is happening.  Sometimes I forget how easy it is to get swept up in a world of conformity.  There is still some sort of white-picket-fence definition of what a family looks like - especially on social media - and when someone with a substantial "difference" enters a family, it can throw people.
I guess I've never been a part of what society would consider a "normal" family and even if that did exist, I wouldn't trade our crazy crew for the world.  Of course we're all different.  And of course that's "okay and even cool."  It's especially cool!  It's the diversity of the human condition that makes life so beautiful.  It's the differences we share that allow us all to teach one another and learning from others is life-affirming.  It's fun!
And for blog and Instagram followers who scroll through the pictures shown here, they're probably noticing how similar our photos are to those showing the holiday festivities at any house with any "normal" family in your neighborhood.  But if us just doing our thing, and sharing that helps society realize that it's "okay and even cool" to embrace differences, then we couldn't be more proud!
So from our different family to yours, Merry Christmas and have a terrific 2018!  We'll be back soon to tackle more fun topics, exchange ideas, and celebrate our cool differences.