Originally Posted by Basswife
My son has Spastic Diaplegia CP, and is just getting to an age where he can say no to exercises and stretches but not old enough to reason with him and explain why we have to do it. (2yrs 6mths)
Is there anyone with spastic CP who knows what hes feeling when we stretch? Go to physio? And all the things he needs to do? Can you help me understand what its like for him? He's only little and i don't want him to have to grow up too quickly. What did your parents do that really helped or hindered you? He also has a sensitivity to texture, do you understand? Can you help me understand why it bothers him so.
Thank you for your help.
To say I have texture issues would be an understatement. It's this multi-layered issue of sound and touch. I believe professionals would call it a sensory issue.
Have you ever heard the "nails on a chalkboard" noise and had this unexplainable sensation though out your whole body that you usually end up feeling in your teeth? I get an extra feeling of sickness in my gut, too.
I get that when I touch anything very soft that most people would find pleasant. Velour, velvet and some ultra-soft fabrics. Also carpet, grass and many other things including food especially coconut. The noise of someone dragging their feet on carpet is also unbearable.
It was so bad when I was small that my parents had to remove the carpet from the house.
It's different for all people I know with CP and some don't have an issue at all. It's not completely uncommon for neurologically typical people to have one or two things they feel the same way about. My sister is very picky about towels and not just in a normal way and the sound of someone snapping their fingers. My best friend in high school disliked the texture of blue jeans, a neighbor I had a few years ago couldn't will fully touch a cotton ball, another that couldn't stand the texture of cooked vegetables and my nephew cannot stand the crinkling of cellophane. Sometimes when you have CP it's just unbearable and you are sensitive to a great many things.
As for PT... well... here are a few random thoughts about it, most of which have already been said:
-It's boring. If you're a kid you want to be playing and doing something FUN. Try as hard as you can to make it something fun. I remember my therapists telling stories and jokes, reading simple books, reciting rhymes, using toys and even using bribery (as a child under five I would do anything you asked if you'd let me swing in the net swing after). Also switch up the location of where you do it. Outside, inside, etc. Even the park (heh... see great for bribery... you can swing after...)
-It can be uncomfortable. When I was doing PT every day at a pre-school program I wore sweat pants or cotton leggins. Also make sure the room is not too hot or too cold. If places are too cold it makes my muscles ache and get tighter but if it's too hot it makes it hard to do anything but lay there and want to sleep. Not to mention just the movements can be uncomfortable (but not painful) and at that young age a body might not recognize uncomfortable as tolerable.
-Something else if you're doing the PT in a public place like a therapy center. When I was in kindergarten and first grade I went to a school that was a mainstream K-6th school but also had a very large population of disabled students so we had our own classrooms with just disabled students as well as students that spent part or all of their time in the mainstream classes. And also a therapy center where OT and PT took place in a large room. Where you could hear other kids but not see them.
It wasn't until I was older while talking to other students that went there with me that I discovered why I always hated going in the therapy room and that was because there was always a child that was crying and or saying "no" and that is very upsetting for other children because you can't help but wonder what is happening where you can't see.
I hope that helps. Sorry I wrote a novel... I haven't been here in a very long time so I suppose it's been a great while since I've written anything.