Tuesday, November 25, 2008

The Wheels are Turning

I have begun to research the pros and cons of a power chair for Esra. So far I have received great resistance from her early intervention team to pursue one so early in life. But my belief is that exploration is learning and cognition comes from investigating every aspect of one's environment. Certainly, Esra is limited in her exploration because of her devices. I want to include her in family work and that just isn't possible with the devices we have. Last year, I stumbled upon a fantastic chair that is made in the U.K. Its called a SnapDragon...I have yet to convince Esra's therapists about its advantages.

The main reason for disagreement from the team is the need to build her upper-body strength. But with the mobility emphasis put on building physical capacity, what is being done to ensure the building of her congnitive and emotional capacities, without continued, almost constant one-on-one supervision? In her devices, she must constantly be monitored. Nothing stays in her hands for long, everything falls or is thrown to the floor because there is nothing to support, and nothing can be accessed with out assistance. And what about learning to bake and wash dishes, sweep and dust, set the table? Certainly wonderful activities for a toddler to participate in. With that in mind, I feel strongly that I should proceed with my intuition to, at least, learn more about the advantages and disadvantages of a toddler-driven power chair.

For those of you who do not know, my daughter has spina bifida, hydrocephalus, Chiari II, speech delay, uses pigeon ASL, cleft palate, heart defect, sleep apnea, neurogenic bowel and bladder (incontinent), can't sit independently, is non-ambulatory (doesn't walk or stand) and overall is about 6-9 months behind her peers. She goes to an early intervention pre-school twice a week for four hours each day. She is in class with normally developing peers. Currently, she uses a manual chair (Quickie) and a mobile dynamic stander (Rifton). Both are servicable, but certainly they only help to move her and put her in place to play at a surface that has nothing underneath it. Even though she is greatly constrained by the bulk and radius of the chair and stander, she can navigate a room with ease. She has excellent hand-eye coordination and can manuever 360 degrees through most flat, home and community environments.

So, back to the SnapDragon. There are only a few families in the U.S.A. that have one of these chairs. I found one. And I'm so inspired by the parents and their little boy. The mom is an artist. She is an exquisite print designer and letterpress artisan. Her combinations in line and color are pleasant and peaceful. I so want to emulate that. Especially, because she, too, is dealing with the needs of a physically dependent person, who daily needs can eclipse much of ones desire to create. She's got my wheels turning, in her ingenuity to find the right tools to take care of her little guy and in keeping her artistic drive spinning.

1 comment:

Mer said...

Hi Peggy,
I love reading your blog and catching up with your family. I didn't realize that Esra had a cleft palate. Actually I didn't even really know what a cleft palate was until our pediatrician told us that our new baby Quinn has a cleft palate. I'd love to talk to you sometime about it.