Tuesday, June 17, 2014

Advice: What Help Have You Received?

What help have you received?



This question is a great because “help” has become a bit of a taboo word, I feel, particularly for people with Cerebral Palsy. (I’ve been in the Cerebral Palsy tag quite a bit and there’s a lot of the same sentiment. A lot of times we wish we didn’t need help.)
Relying on people can be difficult, but the truth is, there is no shame in asking for what you need. I’ve certainly had my share of help over the years.
I’ve had around eight major operations (it’s hard to keep track) between the ages of three days and eleven years old. I was given the option of having another around age twelve, but I said no to it, as it was the first time I was asked for my input about a surgery. The operations range from lifesaving to surgery that’s meant to improve quality of life. Lots of work on my legs.
Along those same lines, I grew up going to physical therapy (as a result of surgeries) and occupational therapy to work on coordination issues. (For example, the spasticity I talked about somewhat affects my right hand as well, and so it took me a long time and a lot of practice before I finally mastered tying my shoes at ten years old.)
In school, I had an IEP (Individualized Education Plan). While I could keep up with my classmates academically, I sometimes needed my assignments shortened or extended test taking time, because it took me a little longer to write. I also had to have adaptive physical education because that was an area where I couldn’t always do everything everyone else did, and adapting wasn’t something the mainstream gym teacher did naturally. Sometimes weird things came up that we had to deal with. For example in tenth grade geometry, I realized I physically could not use a protractor. Luckily my classroom teacher was willing to help with things that involved the protractor.
I currently live in accessible housing. That means the doors are automatic, the building has an elevator, and all the counter tops and surfaces are lower. There is space beneath all the counters for my chair to pull under to get close enough to cook, do dishes, etc.
My family has been amazing at helping me in everyday ways. When I was little my great grandpa and great grandma and my mom and dad used to adapt things for me. (My grandpa made wooden foot pedal attachments with straps so I could ride a Big Wheel. My grandma sewed these pockets with velcro that hung on the back of my walker, which I used before I used crutches, so that I could carry small things with me from place to place. My dad made an attachment on my chair so I could carry my crutches with me. My mom is great at thinking creatively whenever I need something adapted on the spot.) My sister does all the grocery shopping, the sweeping and the vaccuming, while I take care of wiping down surfaces, picking up clutter, doing dishes, putting away laundry, etc. All three of my younger brothers are more than willing to lift me down steep steps.
Probably the biggest help I’ve received is having been advocated for as a young child and being taught to advocate for myself by my mom. Though it was a difficult lesson, I’m grateful she took time to teach me how to say, “I can do it myself.” And in the same way, I’ve learned to ask, “Can you get this for me, please?” or something similar if I need to.

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