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Lots of screaming when left

stephgreenstephgreen Member Posts: 28
My son is 20months and has dystonic cp. He gets very upset when I leave him even if it's to get a drink. It's becoming very waring and getting me down. He just wants to be held and carried all day long and he's getting big now so it's becoming difficult. If I left him he would scream and scream al day long if I didn't pick him up. I know it's a behaviour thing because when he is somewhere where he is being entertained he is fine. I think he's frustrated as he can't move. Just wondering if anyone has any tips or experience of this. I'm hoping he will grow out of it sooner rather than later!!! It's driving me mad.

Replies

  • Harrysmum2Harrysmum2 Member Posts: 2
    Hi I'm afraid this isn't very helpful as I don't have any answers but wanted to let you know you are not alone. My son is 2years 8 months and has 4limb cp, he is held almost all day. I can put him in his squiggles chair when he wakes up until 10am but at 10 he wants out and then screams if I put him down even for a few seconds. it is so difficult as he is getting really heavy and I'm always trying to do things with him under one arm. I also have a six month old so nearly always have someone with me so my baby can have attention, or just be fed etc too!
    My son is slowly improving a year ago he never would have gone in his chair for 2or 3 hours first thing. He used to scream constantly in his buggy but will now let me go for walks with him although he screams if I stop pushing so I can't go shopping etc. he also used to scream the whole time he was in a car but now isn't too bad as long as someone is sitting next to him entertaining him!
    I always think though that I am my son's arms and legs and if I put him down he can't do anything by himself and must feel so abandoned which is probably why he gets so upset. I think if he could play with his toys etc by himself he would be happier being on his own for a bit.
    I really hope things will get easier as he gets older I do sometimes panic he will still want held all the time when he goes to school but I don't know what I can do to help him feel happier by himself.
  • kingboy25kingboy25 Member Posts: 57 Listener
    don't worry Harry's mum in over 25 years I've never seen a disabled child having to be held all the time in school.
    Steph
    I think you have hit the nail on the head re: entertainment. When my son was that age I used to make toy frames of various heights from plastic plumbers pipe and suspend noise making toys by elastic from them. His involuntary movements hitting them caused them to jangle and the involuntary movements eventually became purposefull. Another sanity saver was fastening him tummy down on his wedge and setting up a clockwork train designed in animal form on a circular track. Each time the engine approached him he would get very excited and lash out at it with large movements. I would have to run in every few minutes to rewind it but it was worth it for the respite it gave me and the joy it gave him. I also firmly believe these toys helped him to develop purposeful movements and helped him to inprove his core strength.
    Hope this helps
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