Monday, August 22, 2016

Quick Down Syndrome Tip of the Day

The "Ways I Prepare Josie For Changes" (working title) post is still in the que, but I would be remiss not to offer you access to a Down syndrome resource that I really appreciate.  It's the National Association for Down Syndrome "NADS News" newsletter and it's available for free online!
Every month, when this thing arrives in the mail, I'm truly impressed with the helpful content and relevant advice.  For example, the July issue has "Parent Tips for Better IEP Meetings".  To read that issue and past issues as well, 

Sunday, August 21, 2016

August Catch Up

Hello Long Lost Blogosphere Friends!  First, let me apologize to the email subscribers who got a blank blog post.  The system administrator (my beloved husband), made some changes to my laptop and I still don't have the hang of things just yet...bear with me.  Next, please accept my apology for our absence.  This summer has been...(exhale)...busy, to say the least.  

We were blessed with a visit from Mama Hop and Aunt Leanne in honor of...
...drumroll please...
That's right!  Our beloved Merryn turned 5.  It's just semantics seeing as how she was born 40 years-old, but we celebrate anyway (wink emoji).  Mother Hen has always had a beautiful old soul and a zest for life that sparkles in her big, blue eyes.  
At age 5, few things rival the thrill of party planning (Merryn randomly schedules parties on my iphone calendar for me to discover and chuckle about here and there).  This year, we found ourselves at Chuck E Cheese again with some awesome friends and neighbors who were brave enough to subject themselves to two hours of the noisy, crowded, chaotic, unique kind of "fun" that only that goofy mouse and his mediocre pizza can provide.

If I never return to Chuck E Cheese, it will be too soon.  I can't say the same for Mama Hop, though.  I'm pretty sure she had more fun than the kids did.  She plays a mean game of whack-a-mole!
Show me the tickets!!!!
The celebration continued throughout the weekend much to Merryn's delight.
This dimpled doll face deserves fanciful festivities that commemorate her for the intelligent, hard-working, fun-loving, compassionate child that she is.  We could not be more proud of her and we look forward to seeing how she will continue to bless the world with her gifts in the future. 
Just a few more photos because, who knows when I'll get around to blogging again...and because that finger wagging Josie gets from Aunt Leanne when she refuses to go upstairs and get ready for bed is all kinds of priceless.  Welcome to my world, Leanne.
The Purple Robe Twins!!!
Mama Hop and Aunt Leanne host bedtime story stations because no one can agree on a book.  

Okay, okay...last one...

Thank you, Mama Hop and Aunt Leanne, as always, for coming to help us out while Travis was traveling and for staying for the birthday fun.  You guys are the best!

And as further proof that we won the family lottery, Mama Hop and Aunt Leanne's visit was followed by a visit from another cute crew: my cousins!  Four years ago, my dad passed away from cancer.  His big brother, my Uncle Jim, was invaluable in helping me navigate that difficult time.  Since then, we've grown even closer as a family.  Jim's son, Steve, is married to a wonderful woman named Jen.  They have two adorable children, Emily and Elias.  
A few months back, Jen and Steve were kind enough to travel to the GiGi's Playhouse gala where I had the honor of speaking.  At that time, we committed to getting our kids together for a visit and I'm so glad we did.  They are the most wonderful people.  We enjoyed the beautiful weather with lots of fun outdoor activities.  Jen is a former science teacher and she eagerly made educational moments out of our daily encounters with nature.  Anyone want to hold a praying mantis the size of your hand?!  
Steve is the most energetic and hands-on father I have ever seen!  He doesn't let his 6'4'' stature prevent him from utilizing the playground equipment and soaring on the swings.  
They both have the most enthusiastic and involved parenting style that is reflected in the kind little souls that they created.  The way they invest in and nurture their children is both admirable and inspiring.  
This picture makes me emotional.  I see so much of my dad here.
It's impossible to put into words how much their visit meant to us.  What a gift!  

Tune in next time because I'm cooking up a post on tools that we're using to prepare Josie to start Kindergarten next week.  I'm hoping blogging will create a good distraction to prevent me from curling up in the fetal position sobbing over the fact that my two oldest babies will be at school all day every day!  Where did the time go???

Monday, July 25, 2016

Down syndrome and the Pursuit of Literacy: An Update

One of the most frequently asked questions we receive is about how Josie learned to read.  That question inspired this post:

Today, we're following up on this topic to expand beyond sight words and phonics, and to discuss how we're working on reading comprehension.  As mentioned in the original literacy post, Josie was enrolled in the GiGi's Playhouse Literacy Program shortly before she turned 3.  Her first book was about her family members and page by page, she read "I see Mom...I see Dad...I see Merryn." (for a cute video, click HERE).  I took the GiGi's Playhouse Literacy Tutor Training and one of the most important things I learned was to introduce subjects that the child is interested in; that makes the whole experience more fun for the little reader. For example, I tutored a teenage girl with Down syndrome and her personalized book read "I like Katy Perry...I like Justin Bieber..." 
We kept introducing new sight words and new entry level books.  Josie really enjoyed it and it emerged as a clear strength.  We also continue to work on word families and phonics as we go.  However, in her last IEP meeting - the big, scary (gulp!) Kindergarten prep one - the Kindergarten teacher emphasized the importance of reading comprehension and processing how the pictures illustrate a story.  She said that in kindergarten, the students are asked to draw lots of pictures.  Pictures of what they did over summer, pictures of their pets, pictures of their families...etc.  
I immediately broke out in a cold sweat.  Handwriting/drawing are fine motor activities that have a firm spot on Josie's "non preferred" list.  Unlike memorizing sight words, writing/drawing do not come easily to Josie.  So I knew we needed to provide Josie with lots of opportunities to learn to understand the significance of how pictures can tell a story, and then work on her drawing skills.  

Reading Comprehension: 
Josie has a really awesome speech therapist who broke this down for me step by step so I could help Josie over the summer.  She suggested going to the library and letting Josie pick out an armload of children's books.  As we read, I ask Josie "wh" questions (Who?  What? Where?) "Who ate the cookie?"  "What are they doing?"  "Where is the pig?" 

1.  Ask question.  Allow 5 seconds of processing time.
2.  If child does not answer, repeat the question.  Wait 5 seconds.
3.  If child still does not answer, tell child the answer.
4.  Immediately ask the question again so the child provides the answer.  

Avoid asking "Why?" "How?" and distancing questions (questions about something that happened in the past).  These are more difficult questions and they may leave the child feeling frustrated and defeated.  

Also, have the child turn the page.  This is an important step in keeping the child engaged.  

Another tip:  At school, they use a token economy system.  Josie collects a given quantity of laminated smiley face cards to trade in for an incentive (a mini Oreo, 2 min of iPad, etc.).  Her SLP hides the cards throughout the book.  This adds an extra layer of fun for Josie.  

It's easy to take for granted how complicated it can be to learn that pictures have meaning and that we can create pictures to communicate our thoughts and ideas.  Josie would much rather read and talk about books than to take a crayon to a piece of paper and draw pictures.  That's why I tried to ease into this activity on her terms.  I referenced what I learned from the GiGi's Literacy Program and I focused on drawing images of things that interest Josie.  

1.  Start by drawing people/things that interest a child (favorite foods, TV characters, etc.).
2.  Show child a photo of the item you plan to draw and talk about the attributes of the image featured ("Here is sister.  She has long, straight, brown hair.").
3.  Model (you draw first to show the child).
4.  Let the child try to draw.

I got out a "First Words" book with simple photographs of items by category like "Fruit" and "Nature."  Then, I let Josie select what she wanted to draw.  She chose bananas - no surprise since she loves bananas.  So first I modeled how to draw a banana, then I had Josie try.  

Then, using my impressive Microsoft Publisher skills (you didn't know I was that fancy, did you?  All of this Apple stuff is a fad.  Windows is here to stay!  Full Disclosure: I always say that I married the "PC Guy" from the Mac commercials), I created worksheets of Josie's family members.  I included a photo of the family member, and a box next to it for Josie to draw the person.  Using the "Dotcirful" font I downloaded, I added the person's name for her to trace and then I included a line below so she could try and write the name.  
Because this is a non-preferred activity, it's handy to have some Teddy Grahams or chocolate chips nearby to keep her motivated!  I know that when Josie starts scribbling instead of making an effort,  it's time to call it a day. 


1. Google - Enter "reading comprehension work sheets" into Google and you will be overwhelmed by the results.  Sometimes, I just use a Google image search to get ideas and then I customize my own worksheets using Microsoft Word or Publisher (Windows rules!  LOL!).  Likewise, there are tons of drawing resources available.  The other night, I googled "how to draw Mickey Mouse" and I found step by step instructions.  Josie loved it. 
2.  Sight Word Flashcards - Sets of flashcards can be found all over the place: Target, Barnes and Noble, Toys R Us...You can even do a Google search and find free flashcards that you can download and print.  Tip: Use a hole punch and put the flash cards on a ring so they don't get scattered everywhere.  I almost always have a ring of flash cards in my purse for waiting room entertainment.  This set is Josie's absolute favorite.  
3.  Lakeshore Learning - My dear friend, Kristin, introduced me to this awesome store.  She's a former classroom teacher turned stay-at-home mom and she is an expert at finding fun and engaging opportunities to educate her children.  Lakeshore Learning has thousands of colorful and interactive toys and games that capture kids' attention and make learning exciting.  Our loyalty to Lakeshore Learning grows with each product we acquire.  We just got these super cool "Positional Words for Emergent Readers" books and they are such a neat way to have a hands-on reading comprehension experience. 
4.  Pinterest - Pinterest is a clearinghouse of creative educational ideas.  I have nothing more to say about that.  You need to see for yourself.  Enter "reading comprehension" into the search field and prepare to be inundated.  
In closing (numbered lists seem to be working for me with this post so I'll stick with that):
1.  Repetition, repetition, repetition - One thing I've noticed about Josie is that a new activity is almost always met with a refusal.  The child has no shortage of attitude.  However, as Josie becomes more familiar with something, her interest in the topic and her willingness to attend to a task grow.  That's a huge reason I work with her outside the classroom.  I want her to enter school with a general knowledge of a topic so that she feels confident and empowered when the teacher expands upon it.  
2.  Processing Time - This is a HARD one for me.  Josie's SLP told me that when I ask Josie a question, while tapping a picture, while saying her name over and over, followed by re-phrasing the same question 40 different ways, Josie just assumes that I'm talking to myself and she tunes me out.  Kids with Down syndrome require more processing time.  It's an exercise in self-restraint to ask a question and then offer silence and patience while she contemplates an answer.  And it's amazing how many times it seems like she's ignoring me and daydreaming, that she actually offers a relevant response 10 seconds later!  
3. Scheduling - I was recently asked what our daily schedule looks like in terms of time allocated to academic activities.  The truth is, we don't have a schedule for this.  Sometimes learning takes place in a structured manner - with books and worksheets at the kitchen table.  Other times, it happens informally by chatting about a book that we see in a doctors office waiting room.  
4.  Disclaimer - I do not have a degree in education.  I have no formal credentials and I honestly don't know what I'm doing.  A real teacher might give you entirely different advice that what is cited above.  This post was just designed to address the question of what we've done that has worked for Josie.  If nothing else, it's just a testimony that an ordinary mom can expand their child's skills in simple ways at home.  After all, it's really just providing opportunities to read and to draw.  

Saturday, July 16, 2016

A "Normal" Life...With Down Syndrome

Yesterday, Travis returned home from a business trip to Brazil.  I anticipated doing some blogging while he was gone but every night, after I got the kids into bed, I crawled into my own bed and crashed.  Parenting is exhausting.  Solo parenting is even more so.  So, this morning, when Travis woke up and offered to take all three kids "off my hands," I thought 'Perfect! I'll write a blog post.'  But after staring at my list of prospective blog post ideas, and even calling my mother, I was less than inspired.  

I scoured "The Mighty" because the editorials on special needs frequently fuel my fire one way or the other...nope.  Not today.  Then it occurred to me; while the topic of life with Down syndrome is a huge part of my identity and an enormous passion of mine, life with Down syndrome is  Parenting a child with Down syndrome is just parenting.  And having a sister with Down syndrome is just family.
 Perhaps when a parent first receives a diagnosis of  Down syndrome, there is shock and concern over whether a sense of normalcy will ever return.  With that first year, there is a lot of information to process as one adjusts to the transition from a member of the general/normal/typical (all of these words make me laugh because, really?!) community to a member of the "Down syndrome community." 
 And then somewhere along the way, you find your groove, and you kind of forget about this new version of "normal."  I sit all my kids at the table and feed them the exact same meal.  I remind Merryn not to eat 3/4 of her plate and then "trade' with Lydia who has only finished half of her plate.  I remind Lydia to use her utensils.  And I remind Josie not to blow bubbles in her milk straw.  Someone with Down syndrome sits at my table but the vast majority of the time, I don't even notice it.
 I take Josie to physical therapy once a week just like I take Merryn to gymnastics.  I take both girls to swimming lessons.  Someone with Down syndrome rides in my car but that rarely occurs to me.
 We go outside to play.  Merryn would rather ride a bike.  Josie would rather sit stationary in the Little Tykes red car and sing automotive related songs.  Someone with Down syndrome is in my yard, but that's not usually on my mind. 
 When we visit my sister, she showers my girls with gifts.  She gets down on the floor and plays with them.  She is a doting aunt.  Her Down syndrome diagnosis doesn't change that.
 So as proud as we are of our membership in the "Down syndrome community," and as important as advocacy is to us, we still consider ourselves the family next door.  I certainly wouldn't call us "normal" (snort), but what is normal?  We do the things that most families do.  We eat, sleep, love, fight, forgive, laugh, and live our lives...just like those so-called "normal" families.
 So when we disappear from the blogophere, we're just busy being us.  Down syndrome is still a part of us, but it's woven into the fabric of our family so seamlessly that in any given moment, it's virtually forgotten.  This is not to say that awareness and advocacy efforts will cease to spill forth from this blog.  We are honored to have a platform to help create a positive awareness of what life with Down syndrome is really like.  But the truth is, generally, it's just life.
And we wouldn't trade it for the world.

Tuesday, June 28, 2016

I Am Not My Child's Therapist...Or Am I?

This post is brought to you by the fact that I don't have a Facebook account.  I read an article and it resonated with me.  I desperately wanted to read the comments but a Facebook login was required to do so.  Facebook just isn't my scene so in order to explore this topic further, I am throwing it out to all of my old familiar friends in the blogosphere. 

The article I'm referencing is called "I Am Not My Child's Therapist" and it was published on The Mighty (click here).   The author, Heather Kirn Lanier, has a daughter with special needs.  She references how therapists who visited her home during the first year of her daughter's life often left her "handwritten lists of therapeutic tasks" that she should do with her daughter each week, and sometimes, this reduced her to tears.  She recounts how the pressure to set goals and push her daughter towards these goals interfered with her primary role as a mother.  She writes, "The goal of making her different stole energy from the duty embedding in my very DNA: love her.  Love her as she is.  Just love her."

Perhaps this article struck a chord with me because just one week ago, our whole family packed up and traveled to Gillette Children's Hospital in St. Paul, Minnesota, to have Josie examined by their renowned orthopedic team.  I wanted to find out if Josie's gross motor delays (at age six, Josie doesn't run, jump, or climb) could be attributed to a physical disability beyond Down syndrome.  I wanted to see if there is something we possibly overlooked.  Is there an physiological abnormality that prevents her from being able to do the things that other children her age with the same diagnosis easily do?  Is she in pain?  

We waited months for the appointment.  We traveled a significant distance with 3 small children.  We stayed in a hotel.  Travis took the day off of work.  We reviewed the gait lab pamphlet with Josie and prepared her for what she was about to face.  After an x-ray and a thorough examination by a pediatric orthopedic surgeon, we were told that there are no physical abnormalities and that Josie's gross motor delays are nothing beyond Josie taking her time to reach her milestones at her own pace.  He suggested that we keep Josie enrolled in physical therapy.  He suggested continuing to offer her diverse opportunities to explore movement in the hopes that something motivates her to be less sedentary.

On the way home, I apologized to Travis for making him take the day off of work and for wasting his time.  He refuted that it wasn't a waste of time because we got reassurance and peace of mind.  But I couldn't help but wonder if this was a sign that I've become too proactive/pushy/aggressive.  Should I step back and just accept Josie as she is?  Let Josie be Josie?  Why am I always trying to advance her skill acquisition in every possible area?  Am I a special needs "stage mom"?  Do I just need to back the hell off?  

Enter Ms. Lanier's article which stirred my neurotic pot that was already approaching a rolling boil.  Where, exactly, is the line between "You can do it!" and "You do you."?   I sought insight from several trusted friends; mothers and siblings of individuals with special needs.  Each person offered unique perspective on the situation.  And I hope they'll forgive me if I anonymously quote them:

1.  I draw the line when my gut tells me it's more about me than him [son with special needs].  If I feel the least bit like I'm trying to fix rather than help, I know I'm doing it because of me.

2.  I am not a home educator.  I hated the speech therapist who sent home countless worksheets.  His old therapist recommended various games and activities so all the kids were just playing together.  My son loves board games.  He hates worksheets.  It wouldn't really be quality time for us.

3.  I'm on a mission to help mold all of my children into the best little people that they can be and if that means that my daughter needs a little extra help, well then that's what she needs!  If  you can help to give her that extra leg up in life, then why wouldn't you?  

4.  Stuff I do on a daily basis is over enunciate my words to prompt her speech, count everything, show her letters and words when I see them.  I guess I don't consider that therapy.  But at the same time, I do it way more with her than my other kids, that's for sure.  

5.  While I appreciate not wanting your life and your child to be judged on you becoming PT or OT, if you don't have the repetition, then it's not becoming a learned behavior.  

6.  It doesn't have to be "fixing," it's about encouraging and not enabling them to be less than they can be.  It goes for all kids.  If I don't expect my [typically developing] son to do well in school, he will slack and he will live at home forever.

As Lanier questions, is it our job as parents to be our childrens' educators and therapists?  Are we measuring our success as mothers by our child's outcomes?  Are we promoting development or trying to make our children different?  Is this issue exclusive to raising children with special needs?

As always, your comments are welcome...

Saturday, June 18, 2016

Weekend With Aunt Leanne: Part 2 (The Kiddie Pool Incident of 2016)

Where were we?  Ah yes, the kiddie pool incident of 2016.  Not to be confused with the hotel kiddie pool incident of early 2014 in which a child we thought was potty trained and opted not to put a swim diaper on, was having so much fun at a hotel pool that she didn't want to stop for a potty break.  This became evident when said child left a smeared brown trail behind her as she slid down the kiddie slide.  I still can't recall that story without cringing.  Now, before we go swimming, we all recite the important mantra, "We don't poop in the pool!"  And everyone under the age of 30 is required to wear a swim diaper - just in case!  But I digress...

With our impending visit, Mama Hop thought that a kiddie pool would be an excellent way to beat the heat and provide hours of entertainment so she and Leanne got in the Mama Hop Rod and drove to Toys R Us.  Being the boy scout that she is...ahem...Mama Hop brought a couple of bungee cords with her so she could attach said kiddie pool to the roof of her small sedan.
 Within a block of leaving the strip mall, said kiddie pool flew off the roof of Mama Hop's car into the middle of a busy intersection!  Time for Plan B:  Mama Hop pulled over at another strip mall, abandoned her car, retrieved the pool, and she and Leanne lugged the darn thing a mile home.  And we're not just talking a remote mile along a country road.  No.  We're talking past fast food restaurants, major retail stores, and medical offices.  We're talking one of the busiest stretches of commercial real estate in that part of the state!  In fact, when Mama Hop suggested we recreate this scene for the blog, she literally offered for her and Leanne carry said kiddie pool to TGI Friday's and pose.  Um, yeah.  No thanks, Mom - I'm going to go ahead and pass on that.  It's bad enough that it happened once.  We don't need to relive the mortification - at least this amateur photographer doesn't care to take part.  We can all use our imaginations and picture Mama Hop and Aunt Leanne carrying this kiddie pool across TGI Friday's parking lot.  That's a sight you don't see everyday.  And yet, when my mother calls to tell me these stories, somehow I'm not even a little bit surprised. 

But look what a great investment that kiddie pool turned out to be!  Oh yeah - the #WorldsBestAunt joined in the fun!  Mama Hop even rigged an umbrella to provide little shade for our fair-skinned diva.
 Coolest. Aunt. Ever!  She humored her beloved "Thelma" (her nickname for Merryn - for further explanation, click HERE) and enrolled in her "Sprinkler Sprinting 101" course.
 Leanne drew the line at "Sprinkler Gymnastics 301".
 Ah yes...but these are moments worth walking-a-mile-through-a-busy-commercial-part-of-town-carrying-a-blue-plastic-pool for.  This is the good stuff!
My babies are now awake so this post must come to an end, but tune in next time for the conclusion of our visit with Mama Hop and Aunt Leanne.

Friday, June 17, 2016

Weekend With Aunt Leanne: Part 1

How much fun can you pack into a weekend with Aunt Leanne?  Enough to fill more than one blog post; that's for darn sure!  We recently took our show on the road (no small feat when you're traveling with 3 children, all of whom are small enough to require car seats) to visit and celebrate the birthday of the World's Best Aunt: Leanne!  

We got to see Aunt Leanne participate in Special Olympics bowling.  Imagine our delight when this handsome fellow walked in (you may remember him from THIS POST):
 Those three precious faces in one shot - does it get any better than that?!  I think not.

If you ever have an opportunity to attend a Special Olympics event, jump on it!  Throughout my life, I've had the privilege of attending many Special Olympics events and the atmosphere is a contagious blend of excitement, encouragement, and fun!  These athletes have an enviable ability to find a victory worth celebrating in so many scenarios.  
You walk through the doors and friends cheer your name - celebrate!
You knock over one pin - celebrate!
Your competitor gets a strike - celebrate!
You sink a gutter ball and your friends respond with a hug - celebrate!
Your family comes to cheer you on and you get to introduce them to everyone you know - celebrate!!!!!

Josie even caught the fever!  She sat in that chair and took it all in.  It was pretty clear that she was picturing herself in that uniform someday...
 Go Aunt Leanne!!!!
 Afterward, Mama Hop and Aunt Leanne insisted we take the kids to a candy store.  Because everyone loves kids on a sugar high, right?!
 They were like, well, kids in a candy store!
 Nothing can extinguish the joy of being a kid in a candy store...except, maybe, when your mom and dad cut you off.  

No worries - that's why you have an Aunt Leanne!
 You've gotta love Aunt Leanne!
 Alright, my little munchkins are up and eager for breakfast so this post must come to an end.  But check back because our visit continues with a story about Mama Hop, Aunt Leanne, and a kiddie pool that is so nutty/embarrassing/funny/typical, that it probably deserves it's own post... well as many more fun photos.  Stay tuned!