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Understanding Teenagers With Cerebral Palsy

GuestGuest Member Posts: 1,968
edited September 2014 in Disabled people
Hi

I have a 16 year old son with cerebral palsy affecting all four limbs and no speech.
He uses a pc with communication software installed via head switches. he is in mainstream school about to sit his GCSE's and enjoys football, music, talking to friends and taking his girl friend out and about.
It all sounds quite rosy but for a long while now we have battled over eating, dtrinking and toileting issues.
This i beleive is the only way my son is able to be in control. He makes all his own choices and decisions and i have given him these same choices regarding eating, drinking etc but there are numerous times when he refuses to drink and eat which clearly affects his weight and toileting habits etc. We have tried various methods and regimes chosen by himself to help overcome this problem but it always appears to rear its ugly head at least once a month adn cause tension in our household.
Being a teenager with CP and no voice it appears to have the same effect as an able bodied teenager in that he has lost the power to talk without grunting. When i ask him to explain the problem he always says he is sorry and it just happens. However i feel strongly that he can do it when he puts his mind to it!
Can anyone help me understand my son or rvrn myself as maybe its me that is to blame, maybe my standards are too high, i just don't know! Are there any books that will help? Can anyone help? I also have a ten year old son and these problems are beginning to affect him too so if anyone can give a few tips i would be eternally grateful!! Thanks!

Replies

  • Scottishone1Scottishone1 Member Posts: 2
    Hi

    I have a 16 year old son with cerebral palsy affecting all four limbs and no speech.
    He uses a pc with communication software installed via head switches. he is in mainstream school about to sit his GCSE's and enjoys football, music, talking to friends and taking his girl friend out and about.
    It all sounds quite rosy but for a long while now we have battled over eating, dtrinking and toileting issues.
    This i beleive is the only way my son is able to be in control. He makes all his own choices and decisions and i have given him these same choices regarding eating, drinking etc but there are numerous times when he refuses to drink and eat which clearly affects his weight and toileting habits etc. We have tried various methods and regimes chosen by himself to help overcome this problem but it always appears to rear its ugly head at least once a month adn cause tension in our household.
    Being a teenager with CP and no voice it appears to have the same effect as an able bodied teenager in that he has lost the power to talk without grunting. When i ask him to explain the problem he always says he is sorry and it just happens. However i feel strongly that he can do it when he puts his mind to it!
    Can anyone help me understand my son or rvrn myself as maybe its me that is to blame, maybe my standards are too high, i just don't know! Are there any books that will help? Can anyone help? I also have a ten year old son and these problems are beginning to affect him too so if anyone can give a few tips i would be eternally grateful!! Thanks!
  • NicolaSNicolaS Member Posts: 1
    Hi, We had similar-sounding issues with my son when he was younger, although his speciality was major meltdown tantrums in public rather than refusing food and drink (but going for too long without food or water and getting overtired by trying to keep up with everything definitely made things worse). At one point the scenes were so awful that my other 2 daughters were genuinely afraid to be out with him and my husband and I despaired...we felt he was effectively holding us all to ransom with his behaviours and making everyone's life intolerable.

    However, I can now report that age 17 he is a delight to be with, well behaved in most situations and even thinks a bit about what his sisters and parents might be thinking/feeling/want to do. He has also become more reasonable about managing his disability, eg accepting he needs to be sure not to miss too many meals or go too long without a drink. He also accepts that being tired and/or hungry has a terrible affect on his mood and tries to avoid lashing out. I probably am tempting fate by writing this, but I do think the worst is now over and that it was, essentially, classic teenage challenging behaviour but because he couldn't rebel in a more appropriate teenage way it came out in these appalling rages. Sounds to me as if your son is trying hard to exert some control/influence over something and food and mealtimes is his only option. Looking back, I think our son probably worried that everyone in the family was going to somehow 'take off' and do things without him because he couldn't manage, and so by creating such a ruckus he ensured we couldn't ignore him. Sounds mad, but then I don't think many teenagers think straight.

    Our daughters were frightened at some of his rages, but children are very accepting and now they have excellent relationships with him, so I wouldn't necessarily worry that your 10 yr old will end up alienated. Throughout I also felt it was important to emphasise to our son that while we sympathised deeply with his frustrations at his disability and the extra challenges he faces, those factors were not of themselves a good enough excuse to behave as he liked with no thought for others. I'm not sure if this is what you mean by 'my standards are too high' but I felt my son simply had to learn to behave in a way that would enable him to live harmoniously with others--he couldn't just take the line that being disabled somehow meant his needs always had to come first.

    ((Hugs)) It's only now, a year on from the last big argument, that I recognise how much tension my son's behaviour was generating in the family, but it did get better.

    Pat

  • bloggergirlbloggergirl Member Posts: 6
    Hi
    I have a 9 year old who I hope will be in a similar position to your son in the future. I also have "normal" 15 yr old boy and if it is of any help your description sounded familiar certainly in respect to food. He has always been a very fussy eater and now refuses to eat anything except breakfast cereal or white peanut butter rolls,occasional bacon rolls,beans on toast,pasta with cheese and loads of ketchup. Like you we have tried various strategies,we have always sat down to an evening meal as a family and understand the tension it causes. I am currently thinking "let him get on with it " and doing my best to ignore it. At least I know where he is most of the time,he is happy to be at home in the evenings,he does his school work and jobs round the house with out too much nagging from me.
    I know the implications for not eating well are much more of a problem for your son (my 9yrs old struggles with weight gain) but part of been a teenager is having a perspective on life that parents just don't understand. For these two boys at the moment it appears to be attitudes to food ! Other parents of teenagers may be facing issues over drugs,drinking,joyriding,under age sex,truancy and other horrors.
    All I can suggest is that you "chill" over it,let him experiment with the impact his choices have over his life and be ready to support him when he is ready for that support. So easy to say.
    Wishing you all the best.
    Louise
  • Scottishone1Scottishone1 Member Posts: 2
    Thank You Louise and Pat for your replies!

    Louise, you made me think and you are right, i could be worrying about other things like drink and drugs, it makes food sound quite trivial i suppose. So, yes i will 'chill' and try to ignore it and make it less of an issue to see if it passes. I do try to get him to unleash his frustrations by writing on his computer, ' anything he likes' but he will not do it if i can see it, bless him! There is very little he can do to take control and release frustrations so i guess food and drink he feels is his only way. Just like your son, in the scheme of things he is a good lad!

    Pat, your suggestion about him understanding the effect it has on his body and how he feels when he eats less or not at all, is a good idea. Not sure about your kids but my son does not drink enough, leading to constipation etc so that brings on more trauma. We have spoken about this and he is getting better but your right the combination of teenager and cp is not easy but then again, maybe its less of a worry than some parents have to deal with!
    Interesting when you mentioned his fears about everyone 'taking' off without him as we have just witnessed an emotional moment where he thought we could not go on a ski holiday because of him. Bearing in mind he has been twice before and it would not stop us taking him but he felt we would have more fun on our own.
    Following this episode we had eating issue so maybe you are right when you say its his only way of controlling things and yes he is a teenager with hormonal challenging behaviour just like the others but in a differnet way!
    Ho hum!! At least i know there is light at the end of the tunnel!!

    Thanks to you both!!

    Best wishes

    Linda



    I will carry on
  • stewarttatestewarttate Member Posts: 3 Listener
    I was your son :-) I'm now in my mid 40's with a wife and three girls.
    The best advice I can give you is -
    1) Expect great things from your son.
    2) My parents would never allowed poor behavior from any child or teen in the family.
    3) Treated the same, I was a member of the family and had tasks and responsibilities just as my sisters without CP.
    4) And most important, teach your son to expect bumps and push forward. Giving up is not an option.

    Growing-up, I always found a way to do what I wanted to do. The stories are numerious.
    Much later in life, I discovered how worried my father and mother were when I'd attempted something that pushed my limits. Although, I only witnessed this concern once as a young boy. My mother talks about quiet praying everyday :-)

    One example - At age 10, my dream was to ride a bike. My sisters had two wheel bikes and kids would ride their bikes after school. I wanted to do that, yet I had a great deal of trouble walking and poor balance.

    I saved and purchased a set of training wheels from the local hardware store (without letting anyone but my best friend know). I installed the training wheels and went riding as much as possible with my friend.

    I learned I needed a long seat to pedal the bike. I learned I needed the handle bars down and back. And, I learned that sometimes I could balance the bike so the training wheels didn't touch the ground.

    After weeks of riding with my friend, one of my parent
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