Friday, October 18, 2013

Baker and Down Syndrome and where we are now

 I am so excited to write this post!
And for a couple of reasons.
One, it coincides with Down Syndrome Awareness Month.
And I think, by talking about Down Syndrome, and sharing about our Baker Boy, we are making a very small difference on the way people view and approach it.
Two, it celebrates the many accomplishments of my precious Baker
and evidences the faithfulness of my sweet Jesus.
I apologize in advance for the length.
It combines several posts into one.
Mostly because I'm just awesome like that.
Very much kidding!
If you are a fellow parent of a child with Down Syndrome,
read this while keeping only Baker in mind.
It is very normal (a word I typically refrain from using) for children with Down Syndrome,
because of all sorts of factors,
to be in varying places in all phases of their development.
Your child is unique.
Baker is unique.
Something I learned from the very beginning was to STOP COMPARING.
To typical children.
To what "the experts say."
To what is written in books.
To other children with Down Syndrome.
Comparing will steal your joy.
It hurts.
It causes worry and anxiety.
Celebrate your child and where he or she is right this very single minute.

That's what this post is - a celebration!
On the Go
Baker has the most wonderful Physical Therapist at RISE. Her name is Ms. Angela, but we may as well just leave off the -a, because an angel she is!
A few weeks ago, I presented a concern. Baker had the tendency for his feet to pronate inward when he would stand. I was worried that this would inhibit his walking.

She had noticed it also. In true RISE/wonderfully proactive/we think they are the best thing since string cheese form, she fitted him for itty bitty orthotics (shoe inserts) that help alleviate, and hopefully will correct the issue.
I sent off the form, and wham bam, like the magic shows show, with an abra cadabra, ala kazaam, the orthotics were here! Our angel PT also fitted Baker for the most precious little New Balances. These are especially great because they come in wide sizes, which allow for his inserts, and they also have a roll bar, which is ideal for children with weak ankles (which, for Baker, is a result of his low muscle tone).
They're so tasty, too!
Baker is cruising and tracking around furniture. He is doing a lot of crawling. He has finally transitioned from army crawling to traditional crawling and bear crawling. And let me tell you, Little Man can go!
He pulls up on everything. And I mean everything!
Don't look too closely at yours truly. He has surely added some wrinkles to what used to be a glowing youthful appearance and I keep waiting for the gray hairs. He is always on the go - climbing and moving about. And quite frankly, life was much less eventful, and a little easier before this transition to mobility. Not that I am complaining. Not even a little bit. I love every single hair raising, bejeesus scaring, wrinkle adding, on the go, exhaustingly blissful minute.
We are working diligently, very purposefully, alongside his teachers and therapists to promote walking.
Talking and Signing
Baker speaks Bakerese, and quite fluently. In English, he says a few words.
He still uses "Mama" and "Mum" more often than any other.
He says "Bye Bye" on command.
He knows the cow says "Moo." Although, when asked, Baker says, "Boooooooo" without ever really opening his lips, just pursing them out far enough to emit sound. This is one of the things I hope he never changes. It is the cutest little Baker trait.
RISE has been a integral part of incorporating sign language into our vocabulary.
Each week, in the weekly newsletter, there are words for the week and the signs to accompany them. Talk about helping a mama out!
Baker uses them more often than spoken language and many a meltdown are prevented with simple signs.
He uses eat, drink, milk, water, more, all finished, bath, cow, horse, daddy, school, friend, love, dog, table, hi, bye, kiss, help, wash hands, fish, please, and friend.

Drink Water
We have found several picture books and reference books to help with incorporating sign language into our daily language.
Also, I use Google a lot. There are also videos on You Tube. "Signing Time with Alex and Leah" makes frequent appearances on the iPad.
Picture the pearly gates. White and glorious, euphoric and magical. And now, you can envision The RISE School.
It is a dream environment.
Baker has four teachers. But everyone there invests in every child there. That is obvious every single day. And something, as a mother and an educator, that I absolutely love. It truly takes a village.
All of Baker's therapies occur within the day at RISE. Each day, the Music and Speech Therapists visit his classroom. Somehow, someway, they corral all seventeen one year olds into a circle, onto stools, for this time. It is nothing short of amazing. Also during the day is playtime in the commons (an indoor play place that is most certainly a child's dream with foam blocks, trampolines, and riding toys). This is where all of his physical therapy occurs. Lastly, they have naptime. On little kid nap mats. Again, how they get all of those one year olds to stay put on nap mats is way beyond me!
They have weekly units, complete with letters of the week, themes, book they are reading, songs they are singing, and signs to accompany their vocabulary words.
I love the books they make to accompany each unit. 
Here are some evidences of his work. To some, these are refrigerator art. But I know, each activity serves a purpose. Holding a crayon, feeling a feather and then a sponge, cutting and pasting, sorting, identifying - each promotes motor development. Each creates a foundation which will be built upon for years to come. Each makes him more knowledgeable. Each makes him more aware of the world in which he lives. Each is treasured. Each is a gift to serve as a daily reminder of Baker's progress, of Baker's potential, of the blessing of these teachers investing in his life.

I get teary thinking about the path that brought us here. And how fortunate we are for these men and women whose passion is serving children. Good, good stuff.
Let's just say he is his mother's child. And by that, I mean, the boy enjoys food.
Some of Baker's favorites - apple cinnamon oatmeal, Eggo waffles, Goldfish, Cheerios, Cheetos (as of yesterday), grilled cheese sandwiches, cheese sticks (I'm noticing a pattern - CHEESE EVERYTHING), spaghettios, ravioli, macaroni and cheese, yogurt, applesauce, rice, sweet potatoes, butternut squash, green beans, among others.
We still haven't introduced peanut butter. I keep thinking we will. And then the thought - if Baker were allergic, is now a good time for him to go into anaphylactic shock? Is now a good time to go to the hospital? And the answer is always a resounding NO! So, I wait. And if that is the thought that continues, I guess I will continue to wait.
At RISE, they are big on instilling independence. Eating is not excluded. Baker is now holding his cup on his own, and is trying is hardest to use utensils. This makes mealtimes a time when I enter into an attitude of worship. Be near, oh God, please, please, please be very near. He, bless his baby heart, has gotten his mother's perfectionist tendencies and gets incredibly frustrated when he cannot do it just right. When his body will not perform his mind's commands.
I am sure there is more to tell. There always is. For now, that's enough.
This is where we are.
We are blessed to be here.
I could write all day, everyday about Baker. I could write about his progress. I could write about his smile. I could write about his nonsensical babble that, to us, makes perfect sense. I could write about his tight squeezes and open mouth kisses. I could write about the incredible privilege of rocking my baby to sleep every night. I could write about how being his mother is one of my life's greatest joys.
Instead, I soak it all in. I savor each day. I reflect, and I am thankful.
Do I get discouraged? Do I worry?
But, this morning's Jesus Calling spoke right to that. Funny how that happens.
"Anxiety is a result of envisioning the future without Me. So the best defense against worry is staying in communication with Me. When you turn your thoughts toward Me, you can think much more positively. Remember to list, as well as to speak, making your thoughts a dialogue with Me."
Then, the author provides two rules for considering future events. One, "Do not linger in the future, because anxieties sprout up like mushrooms when you wander there. Two, "Remember the promise of My continual Presence; include Me in any imagery that comes to mind..."
Instead of living in a world of worry, a future world full of uncertainties, we live in the now. Trusting His with Baker's future.
We celebrate today. The present. It is a most precious gift.

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