Beckygram: Adaptation

I am almost 28 months old now. Most children my age are running around being chased by a parent. However, I am still not standing independently and I cannot walk. As a child with Down syndrome and congenital heart disease, my medical team and therapists expect delays.

But my lack of gross motor skills has been a source of surprise and frustration, particularly for my physical therapist.

Mom has been told by a number of professionals that I am one of the highest functioning children with Down syndrome that they have ever worked with. My receptive language abilities and cognition, coupled with creative sign language skills, are impressive. I just don’t want to walk. Mom says that carrying me around is the equivalent of strapping a 25 pound bag of potatoes onto your hip. I’m a heavy, dead weight. Without a care in the world.

One of my therapists mentioned that this may be due in part to Down syndrome obstinacy. Big term which I will try to explain. At times my preferences regarding physical movement are firmly melded to an absolute refusal to cooperate. Often this does not align with the therapeutic goals of weekly sessions. This obstinacy manifests itself in one of two ways: I either launch an object across the room or I drop anchor.

In other words, I am stubborn.

So the other week, Laura (the world’s most patient and creative physical therapist) showed up with a box. Novel approach which piqued my interest. After putting on my orthotics, high tops, and leg braces, she distracted me with crayons, stamps, and markers as I decorated my box. We practiced pushing the box around the room. Sometimes, I leaned against the box and practiced squatting down or shifting my weight from the box to the coffee table. Super productive session.

My family quickly found another use for it.

Apparently, I am a rather destructive toddler despite my ambulatory issues. This is a pressing problem when everyone wants to play a board game. I am fascinated by the dice, cards, and small choking hazards. A moment of desperation spawned a genius adaptation. Mom put me in the box.

It’s not all that bad. Despite the confined environ, I am still part of the fun. My people surround me and I have a good view of the action. I am often peppered with Cheerios. When I get bored, I drop down and read a book.

According to Wikipedia, thinking outside the box is a metaphor that means “to think differently, unconventionally, or from a new perspective”.

Which sometimes means staying inside the box.

7 thoughts on “Beckygram: Adaptation

  1. Thanks for such a well-written Beckygram. Sounds like she is acting like a toddler without the toddling part. Hopefully the box will bring a game changer.

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  2. Just think, Becky, if you keep up the shenanigans, your therapist can affirm that you are into “boxing!!” love, Aunt Cynthia❤️☘️

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  3. You are a hoot Becky
    Why do what others want
    You want your own way
    You also have lovely blue eyes
    Just close your eyes and nod no
    You are doing extrodial well
    Keep up the good work!!!

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  4. Beautifully written, as always! I’m sure Becky brings all of you so much love.

    It was so nice to meet you at the pancake breakfast yesterday, Kathleen. What a beautiful family you have!

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