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Old 06-15-2010, 04:11 PM   #1
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Your insight please.

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.

 
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Old 06-17-2010, 06:51 AM   #2
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Re: Your insight please.

I can answer about the sensitivity to touch (ie if you run a feather along the bottom of my foot I will try to pull my foot away before you start) What some would see as pleasure, I find...not exactly painful but you get a "jolt" and it's not pleasant. I guess it would be like if you started out running your finger under hot water because it was cold, then you get warmer and the water gets too hot, you pull your finger out.

If his spastic reactions are too bad, it will hurt to have stuff touch him. Best way I can describe it.

As for the exercises, it sucks, but I think you just have to do it. As long as you know it's the "right" exercises (in other words they aren't hurting him a HUGE amount and you are doing it under a therapist's guidance)

The more you do with him now, the more flexible he will be later and that will be a benefit later on. I guess the best way to look at it is Do you like working out at a gym? Not always, but you know it's good for you...

That said, make sure you trust those that are around you, and ASK if you aren't sure. One of the things my Mom never did was ask questions, so now I find myself pretty much on my own as far as research, issues ect...

I didn't start to remember therapy til around age 5..not to say it will be the same for your son, just my experience.

I quit at 16 because by then, I was busy with high school and walking up a million stairs a day, I was in better shape than most of the therapists and I found them to be very critical. (You should be doing this or that...) at the time I was killing myself carrying heavy bags/doing homework/doing stairs and didn't feel they were helpful so I was ok with leaving but I'm grateful for the early years of help.

Try putting music he likes on when you do it, might make it more fun.

Take it for what it's worth:-)

 
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Old 06-17-2010, 12:15 PM   #3
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Re: Your insight please.

Thank you for your reply, I do ask questions and yes, I trust our professionals, you made a good point about that I think. Its difficult too understand something you have never experienced, so thank you for your insight.

Do you get the same sensitivity with food textures? Is there any food / drink you struggle to put in your mouth and chew? This seems to be his biggest sensitivity.

 
Old 06-17-2010, 08:23 PM   #4
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Re: Your insight please.

No I don't have food eating issues but I will say, I like bland food. I'm not sure if it's the CP or not, but I have read that CP can affect taste buds (make them underdeveloped) It's hard to know if it's CP related or just my taste. I love potatoes/steak/corn but I eat the same stuff over and over. Lots I don't like (seafood, lamb, most veggies) I avoid going to others for dinner because of it. Everyone else in my family eats that stuff with no problem but again, taste or CP?? Not sure.

 
Old 07-11-2010, 11:30 AM   #5
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Re: Your insight please.

Quote:
Originally Posted by Basswife View Post
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 professions 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.

 
Old 07-11-2010, 11:31 AM   #6
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Re: Your insight please.

Quote:
Originally Posted by Basswife View Post
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.

Last edited by Malwm01; 07-11-2010 at 11:36 AM.

 
Old 07-13-2010, 07:25 PM   #7
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Re: Your insight please.

My son has CP and we did lots of therapy with him from an early age on. We were lucky that he had things he really, really liked from an early age. One of them was elevators. So we'd go to places with elevators (like the church down the street), and he'd do an exercise and then get to take a ride on the elevator as his reward. Then we'd get off and do another exercise, etc. We'd also buy yard sale toys and have him reach for them...tried to make it fun, not work. That really helped him enjoy it, and we had fun, too!

 
Old 07-15-2010, 06:10 AM   #8
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Re: Your insight please.

Thank you to everyone for your replies, its comforting to know we're not alone in our struggles. And great to get some ideas and thoughts. Like it was said somethings are difficult to know whether its the cp or just character.

We are lucky our son is motivted - he wants to walk even though he can't at the moment. As he gets lder some things are becoming easier - toys and treats, so I feel encouraged we'll get hi on his feet one day - Thank you.

 
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