Sunday, March 31, 2013

World Down Syndrome Awareness 2013

On March 21st, 2013, people around the world helped spread awareness about Down Syndrome by wearing socks that didn't match.  The intent was to spark a conversation about Down Syndrome and educate others about the myths and facts about people with Down Syndrome.

As a Speech Pathologist, I have been so fortunate to work with so many families over the years, many of which included a child with Down Syndrome.  These families worked so hard to ensure that their children were treated with equality and respect.  Then, a little over five years ago, my life became richer when our niece, Ella was born.  I will never forget leaving the delivery room to run downstairs and tell anxiously awaiting family members that my sister had a girl!  When I returned to the delivery room, my sister and her husband were solemnly sitting with their doctor.  The baby had been sent to the NICU because she was having trouble breathing and the doctor looked at me and asked, "Have you heard?"  Several thoughts rushed into my mind before the doctor could add: "Given Ella's features, I suspect that she may have Down Syndrome."  My next thought was: Thank God!  There were so many other possibilities, but at that moment, this was the best, possible news that I could have heard.  I knew from experience that there was hope for a healthy, happy life for this little girl and I knew that I could be instrumental in her care and development.  Five minutes later, I called in the troops from the Early Intervention that I worked for just a few doors down.  She would have the best physical therapist on our team, an "Auntie Net" that would always be there for her, and two of the greatest, kindest parents that have ever walked this earth (who me, biased?)

Today, Ella has come a long way in just a few years.  At three months old, she underwent a successful heart surgery at Boston Children's Hospital.  By three years old, her test scores indicated low average ability levels and she strutted her way into a public school preschool program with her peers.  Last June 2012, I proudly watched her in her first dance recital with tears STREAMING  down my face both then and now as I just think about how happy she looked on that stage and how proud I was of this little girl.

Thank God for Ella and thank God for my sister and brother-in-law who continue to do such a stellar job with raising this rock star and her little sister, Abby!  This brings me to what inspired me to write this post.   In an effort to help educate and spread some viral awareness about Down Syndrome, I would like to share some details about how my niece defies the myths about Down Syndrome.  You can print and distribute the handout below from a National Down Syndrome Society page about the myths regarding Down Syndrome.


In summary, Ella lives at home, not in an institution and recent test results indicate that Ella has learned many new skills.  They are in the process of transitioning her to a regular kindergarten for the fall (she has a mid September birthday and missed the cut off this year) and she has participated in a public preschool for the last three years.  Ella will continue receiving speech, occupational, and physical therapy supports to address her needs.  Over the last few years, many have noted that when it comes to Ella, it's not that she can't accomplish tasks, it just tasks her a little more time.  My sister has found several, local supports in their small state of Rhode Island.  In fact, my brother-in-law and mom have served on the board since Ella was an infant.   Finally, Ella isn't ALWAYS happy: she has varying emotions just like any other five year old, independence seeking child!

As I step off my soap box, I would next like to share product information that pertains to the Down Syndrome population.  The first product is about a doll, no not my niece, an actual play doll;)  My sister shared a post on Facebook about dolls that are being created and sold that proudly display features similar to those of a child with Down Syndrome.  These beautifully designed dolls were created when a mom of nine year old, Hannah with Down Syndrome, began a quest to find an adequate representation of Down Syndrome features.  You can find more details about this doll at these links:

Article about dolls with Down Syndrome features

Order site for dolls

The next link is for a designer that tailors clothing for the unique body shapes of children, teens, men and women with Down Syndrome.

Clothing for people with Down Syndrome

Finally, I have a resource that was very helpful for Ella's oral motor development: Talk Tools.  This company not only supplies adaptive cups, but also straw and whistle  hierarchy programs.  Talk Tools has both live and video trainings that I HIGHLY recommend for Speech Pathologists and caregivers.  These video trainings have improved my education about servicing pediatrics with low muscle tone.  As a therapist, I even earned continuing education credits for video instructions.  The parent video is $15 well spent and you can grab it at this link-

Talk Tools Parent Video

As I have proudly mentioned, Ella would not be the rock star that she is today without the support of her family and friends.  In addition, she has received exceptional care through Hasbro Hospital's Early Intervention Program and Therapediatrics in South County, Rhode Island: a private clinic run by the very talented, Dina DiCola, who is by far the most amazing occupational therapist that I have had the honor of working alongside!  And of course, Ella brings something to the table here too.  I always tell Ella what the character,
Aibileen Clark from the book, "The Help" by Kathryn Stockettis told a child that she cared for:  "You are kind. You are smart. You are important."

Please spread the word about Down Syndrome Awareness and share more resources in the comment section below.  Thank you!!

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