31 for 21 What If Wednesday: MAKING A DIFFERENCE

What if I could make a difference for the new families?

I am very excited, but also a bit nervous, to become a Parent Liaison with the Down Syndrome Association of Atlanta.  I am attending the Parent Liaison training this coming Saturday and I've volunteered to be the contact at a local hospital for families that give birth to children with Down syndrome.

When Gwyneth was born four and a half years ago we did not have a visit from a parent of a child with Down syndrome.  I think it would have made a monumental difference in our first months with her.  We were lucky enough, however, that there was a lactation consultant who worked with us who has a daughter with a developmental disability and hypotonia like Gwyneth has (which made breastfeeding hard).  This woman made a big difference for us in those early confusing days.  We were bombarded with visits from all types of medical professionals, some of whom (I know now) did not say the most appropriate things.  It tough for anyone to know exactly what to say in a sensitive situation like that.  So it was very helpful to meet a woman who could give us empathy, instead of hesitant sympathy, because she had been in our shoes.

The biggest turning point for us in our early journey as Gwyn's parents was when she was 6 weeks old.  We went to a Down syndrome support group for families that had kids ages 0-5.  Neither of us had ever known young children with Down syndrome before.  Only teenagers or adults.  So to see a few 2- and 3-year-old kids with Ds running around and playing with each other and the siblings was eye-opening.  And talking to the parents and hearing their stories made me realize we weren't alone.

I hope I can make a difference for the new or expectant parents in my area soon and give a little back to this wonderful community of Ds families.

This video came out at the beginning of the year, and I loved it's message to new parents.  It is also full of well-explained facts and figures.

31 for 21 Therapy Tuesday: HEIDI THE HORSE

I was very pleased today to be able to observe Gwyneth's hippotherapy session.  When she started in August, it was upsetting for her to see me nearby because she wanted me to "rescue" her.  But now she is comfortable riding the horses, so I watched from a distance today.

Today Gwyneth rode on a golden horse named Heidi.  She looked so cute with a giant helmet on top of her little body riding forwards, then backwards on the horse, and then side-saddle.  The OT walks along side the horse and holds onto Gwyn while a volunteer leads the horse.  They stop and start a lot to work on Gwyn's balance.  When they were stopped I could hear the OT asking Gwyn to tell the horse "Go, please" or "Walk, please" and Gwyn would yell it out.

When the riding was done, Gwyn's OT held her hands and asked Gwyn to slide off the horse.  It is unbelievable to me that Gwyn would scoot forward to slide off the saddle and fall to ground with only her hands being held.  She really trusts her OT.  I expected her to be scared and need help down.  When she was on the ground, the OT had Gwyn say "Thank you, Heidi" to the horse and pet her nose.  As they walked away, they said "Bye, Heidi" and "See you later, Heidi."  Extra adorable to hear Gwyn talking to Heidi. :) I love seeing Gwyn so comfortable with an animal that is so much larger than herself.  I am thrilled that we were able to get her cleared for hippotherapy after her brief diagnosis of AAI (Atlanto-Axial Instability) was reversed.  It has been so good for her!

31 for 21 Milestone Monday: MY NAME IS...

Last month Gwyneth surprised us by revealing that she learned to spell her name!  All of the repetition at school and home has really paid off.  She was talking in the kitchen during lunch one weekend and she was saying "name" and "Gwyn" and then I heard her say "G...W...Y...N!"  So awesome to hear that. :)

31 for 21 Sibling Sunday: RYKER'S FIRST BUDDY WALK

Little brother Ryker experienced his first Buddy Walk today at Atlanta's Centennial Olympic Park; and he had a blast!  He danced to the music, ate a ton of food, and roamed around making new friends everywhere (and playing with their soccer balls).  :)

Gwyneth had a rough start to the afternoon with a small "tantrum" from sensory overload I guess.  We had chosen a place on the grass to eat our lunch that was near a cornhole bean bag toss game.  Gwyn was upset, close to crying when I wouldn't let her hug me constantly, and refusing to eat for a while before I realized that she didn't like the nearby noise and actions of the bean bags hitting the wooden cornhole boards.  Luckily the game ended and she was willing to eat a tiny bit before the walking started.

This was the first year that Gwyn was able to get out of the stroller and walk across the finish line!  We are so proud of her.  I'm sure that next year, she will be walking without us holding her hand.

31 for 21 Speech Saturday: NEW PHRASES

Gwyneth is talking more and more these days.  Her vocabulary is increasing from being at school, reading books, watching educational shows like "Super Why!" and going to Speech Therapy on Saturday mornings.

Here are some of the cute new words and phrases she has started saying:

"Good morning!" (said at all times of the day)

"Oh, George! GEORGE!!!! Oh no!  Ohhh...it's okay, George" (from watching Curious George...she names most of her stuffed toys "George" and she pretends that they are getting into trouble like Curious George)

"Notebook" and "Look! A clue! A CLUE!!" (from watching Blue's Clues)

"Take a bow" (from Super Why's Princess Presto)

"ZZZZAP!" (also from Super Why)

"No screaming, Ryker! Time out!" (copied from Mommy)

"Mugo, no kissing!" (learned from Mommy talking to one of our dogs who licks everything)

(Shaking hands) "Nice to meet you. What's your name?*" (from practicing this at school)
*and also sometimes answers this question with "Gwyn" or "Gwyneth"

:)