First, some background: My 5 year old nephew was diagnosed with CP shortly after birth as the result of hypoxia during birth. Nick has mixed tone with spastic quadrants and his speech is affected. He was also recently diagnosed with epilepsy and is now on Depakote after 6 months on Tripletal with 9 breakthrough seizures. Nick gets regular physical therapy through Early Intervention, and also does Conductive Education a couple of times a week, which has really improved his flexibility and manual dexterity. He can walk a short distance with a walker, but his trunk muscles need to get stronger for him to use a walker full-time. So Nick spends most of his time seated on a bench, or 'hopping' around on the floor on his knees. He sometimes uses a wheelchair at his pre-school early intervention program.
He will be mainstreamed into the local public kindergarten this fall and we're all very concerned about how he will fit in. He is very talkative with his family, but he speaks very slowly and is sometimes hard even for us to understand. He is mostly mute around non family members, even people he has met several times. His parents get extremely frustrated when he won't even say hello to their friends - he just smiles. They tell him he's being rude but nothing seems to work. I honestly can't tell if he's just shy or if his CP makes it hard for him to initiate speech in those situations. Is he aware that he sounds different from other people, so that he only feels comfortable speaking around family? I don't know how he can suceed in school if he never speaks up. Nick is very intelligent - already reading some and he loves music - he can name every instrument in an orchestra and can tell the difference between a Fender Stratocaster and a Fender Telecaster. He is obsessed with rock and loves The Who, The Rolling Stones, The Beatles, U2 and many others, singing and playing along to their CDs. He has a great personality, but how will anyone ever know?
He also is regressing in his potty training recently. Since Nick can't walk or get himself on or off the toilet, he needs to tell an adult when he needs to go to the bathroom. He only consistently does this with his parents, with me and other family caregivers, he has frequent accidents, especially with bowel movements. His supportive potty chair is at school because he was refusing to go there, and he doesn't have a second one at home, so someone needs to be with him while he sits on the potty or he'll fall over. This means he has no privacy, which could be affecting his desire to tell us when he needs to go. Maybe he'd rather have a bowel movement in his pants than deal with having us sit with him while he goes. We can't get angry with him for fear that he'll hold it or we'll cause psychological problems, but he'll already be the only kid in his class with CP, what if he can't control his potty too?
Long story short, we're very worried about his social development in kindergarten and not sure how much of these issues are CP, innate shyness (both his parents were very shy children but grew out of it) or how to appropriately deal with these issues. My sister is very sensitive about these issues and won't talk to a child psychologist about them, either because she's grown cynical that they can help, because she's prioritizing other things, or denial (or maybe a combination). I'd love to hear directly for others who might have had similar experiences.
Hi! I think it might be a good idea to have him go to a summer camp or something similar to that. Even if it's for 2 or 3 hours instead of a whole day. I think it's very important to start building social skills from the very beginnig, esp. when we're dealing with a child that has a disability. The quicker they start learning to rely on their own, the better it helps self esteem. I also think the parents play a big role in this...it's best that they start "rewarding" certain action like when he says hello to someone on his own or even things like going to the toilet on his own. He will then feel good about what he's done and most likely repeat this action, thereby building his self-esteem. Just some thoughts. Good luck!
I felt like I was reading about my 3 year old. Except he would rather not talk to us either. He will talk if absolutely necessary at home but is pretty much mute in public. The other day I took him for his hbot treatment and the lady asked me if he had started 'talking at all yet' we have been going there for a few months and he has 'talked' since we went there so it just kind of hit me just how mute he is in public. The funny thing is she had been in the chamber with her son and while we were waiting my son walked up to her dog and said hello but wouldn't give her anything but a smile. he has major articulation issues and really needs to be developing his speech so it is very frustrating. I think part of it is cp and part of it is personality. He won't particpate in new enviroments (hes definately not autistic) abosolutely bombed his Preschool test. He purposefully answers questions wrong both at home and school until you say "if you get this one right we will quit then magically he 'gets' it" . The thing we have learned about him is he does these things to 'gain some control' in his life. It sounds like with the accidents that might be whats going on with your nephew. I have no advice on how to handle it we just talked about it tonight and we jsut don't know. Have they thought about waiting until six for kindergarten? My son isn't going until 6 1/2. We are in a different situation in that my son does walk and we are hopeful that he will be completely fuctional in a few years but at five we expect speech to still be a real struggle for him. We want to give him an extra year to develop physcially and hopefully expressively even if that means taking a break from the services the school offers.
I just have to say I think its great your nephew is in conductive education, I wish they had it around here for my son im such a huge fan of the concept.
Thanks for the responses. I hugely helpful to just know that other people understand what we're going through.
Hope25, we use rewards and incentives alot with Nick. For example, there was a book on The Who that he liked, so if he went a day without an accident, he got to read it at bedtime. It got to the point when he would see that one of us had gone to the bathroom and he'd say "You get to read The Who book!" But it simply doesn't work anymore. We give him high 5s and big hugs and tell him how proud we are of him when he tells us he needs to go. And when he has an accident, we make sure that he understands that we're upset he didn't tell us in time that he had to go, not that he had an accident. He's disappointed if he doesn't get to read the book, or watch a favorite DVD, but its not a big deal anymore. Right now he's dying to come visit me in my apartment and we've told him he needs to go 2 weeks with good potty behavior. Nick talks about this potential visit all the time and pretends he's coming to visit me, but so far it hasn't led to a change in his behavior.
Newtocp, I agree that the potty thing is a complex dynamic and that control is probably involved. As for delaying kindergarten - there's just no way my sister would agree to that. His assessment shows he's ready, and he is actually fine about the potty at school - because his special chair is there. Kindergarten classes also tend to have structured times that they go, and he will have an aid. The regression is at home and we're worried about how to reverse it, and prevent it from happening in his new school in response to the big change.
By summer camp, do you mean alone, without Mom, with AB kids? He's in early intervention all day (has been since 2 yrs old) and actually is pretty good about participating with teachers, therapists, aides and other kids, but he's one of the more talkative, cognitively typical kids in his class, so its the fact that he will be with AB/typical kids in kindergarten that has us worried. His whole family and EI team have been talking about kindergarten for a couple of months now, and once every couple of weeks his teachers actually take him to the new school to help him get acclimated. His mom drives him by whenever she gets the chance and they talk about it. Nick's actually begun talking about school on his own, and when you ask him if he's excited to go, he says "Yeah!" enthusiastically.
I do think he needs to be challenged in social situations away from his family and the therapeutic world. When he goes to parties with AB kids his age my sister leaves him alone to deal with it, and we have seen him talking one on one to a kid he knows, but mostly he hangs back and silently observes. Actually, writing this, and thinking about the big picture, his shyness isn't THAT extreme, I mean he's not at all clingly like some kids his age I've seen. The contrast between his behavior and home - both the good talkative behavior and the bad potty behavior - and in public is striking.
I guess the bottom line is that we adults are much more freaked out by Nick's disability than he is. Nick is a very happy, otherwise healthy kid. He's whole and complete as he is, but we're all still struggling with our own expectations of who he SHOULD be and dealing with the stress of caring for him and his new, typically developing baby sister (she just turned 6 months). My sister and her husband are looking to buy a new house because their colonial has too many stairs.
Anyway, thanks again. And I'd love to hear from any kids, teens or adults with CP about their memories of being 5-6 yrs old and starting school. I really want to try and understand how aware Nick is of his 'difference' and how he might feel about it.
memories of being 5-6 yrs old and starting school. I really want to try and understand how aware Nick is of his 'difference' and how he might feel about it.
Hi,
For me, when I was younger, being "different" wasn't a big deal at all...little kids might ask why you are different, but if you explain it to them somehow, they say "Oh, ok" and treat you just like anyone else.
As for the shyness, CP might have something to do with it, but I have two young able-bodied cousins who act the same way...the one, who is 3, will hide behind her mom when in public and someone tries to talk to her. I think some kids are just shy at that age.
He will talk if absolutely necessary at home but is pretty much mute in public. The other day I took him for his hbot treatment and the lady asked me if he had started 'talking at all yet' we have been going there for a few months and he has 'talked' since we went there so it just kind of hit me just how mute he is in public. The funny thing is she had been in the chamber with her son and while we were waiting my son walked up to her dog and said hello but wouldn't give her anything but a smile. he has major articulation issues and really needs to be developing his speech so it is very frustrating. I think part of it is cp and part of it is personality. He won't particpate in new enviroments (hes definately not autistic) abosolutely bombed his Preschool test. He purposefully answers questions wrong both at home and school until you say "if you get this one right we will quit then magically he 'gets' it" 
. The thing we have learned about him is he does these things to 'gain some control' in his life. It sounds like with the accidents that might be whats going on with your nephew. I have no advice on how to handle it we just talked about it tonight and we jsut don't know. Have they thought about waiting until six for kindergarten? My son isn't going until 6 1/2. We are in a different situation in that my son does walk and we are hopeful that he will be completely fuctional in a few years but at five we expect speech to still be a real struggle for him. We want to give him an extra year to develop physcially and hopefully expressively even if that means taking a break from the services the school offers. 
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