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  • Em
    Hi Mary Ann, I don t mind you emailing me at all. The best way to find out the exact diagnosis and severity would be to ask the doctors, however at 2 they may
    Message 1 of 1 , Sep 19, 2005
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      Hi Mary Ann,
      I don't mind you emailing me at all.
      The best way to find out the exact diagnosis and severity would be to ask
      the doctors, however at 2 they may still be unsure.
      Does he have any physio, occupational therapy, speech therapy, early
      intervention programs? The best way to 'catch up' is through early
      intervention, the earlier things start to be worked on the better (in most
      It's great that he is saying one word.
      It sounds like he has more severe CP but that could also be because he is so
      young and hasn't had the chance to learn yet.
      People can have CP without an Intellectual Disability, i have worked with
      two people who were 100% 'normal' intellectually but were unable to control
      any body movements or communicate verbally.
      Sleeping - if he is unable to move himself then he may be waking because he
      needs to be repositioned. We roll around in our sleep so do not have to wake
      up. WIth the children i work with most get put to bed a couple of hours
      before their parents their parents then will change their position as they
      are going to bed (without waking them) the child then will sleep for a while
      longer. I work with 2 girls who need to have someone with them 24hours, no
      sleep at all (they have carers every night from 11 - 8:30). They get
      repositioned every 2 hours when awake and 3hours when asleep.
      I would suggest putting him on his side with pillows behind to support him,
      a small cushion between his legs to keep everything straight and relieve
      pressure. This is a very good position to sleep in for longer periods. You
      can also buy (expensive) matresses that are to prevent pressure sores and
      the girl who uses this does not get repositioned for 8 - 10 hours and no
      problems with sores or discomfort.
      We first got Trin when she was 18months -2. She was like a rag doll, could
      not move, roll over, sit, etc. Mum did conductive Ed with her for 3years
      trying to teach her to sit, crawl, etc and she didn't seem to be making much
      progress apart from the sitting. When she was about 6 she was sitting on our
      wooden footstool like she did everynight to practice her balance, infronmt
      of the tv. She lent forward, hands out and crawled 3 steps to the tv and
      pulled herself up. That's what she would do everynight for the next 8months
      and we hadto watch the tv around her because noone was going to move her. We
      have had her full time since about then. She is now 14in November and can
      walk using a Kaye Walker (fairly simple frame) or when supported from
      behind, she is really cheeky, she can eat independently with a fork and most
      of a meal with a spoon, and of course fingers and more. She is just learning
      to climb into her wheelchair independently from the floor which involves
      some crawling again which is funny because she is so big and doesn't have
      the balance. If you saw her 10 years ago you would never have thought she
      could achieve this. She uses 2 Makaton signs - eat and drink but understands
      about 20 and we use photos to show her what she is going to do, e.g. school
      bus, gym, swimming pool, etc. The doctors thought she would always be at an
      18month age but now they say around a 3 year old age. If they saw some of
      the other things she would probably be a few years older but that would be
      about it now.
      Get your daughter to talk to the doctor about therapy for him and the sleep
      issues, it could be age related however i would say it is more likely due to
      him not being able to move himself.
      Please email me if you have more questions and i will send this to the group
      because they will have lots of great advice.
      All the best
      Sister/carer to Trinity (13) with congenital cytomegalovirus, severe CP,
      profound hearing loss, severe intellectual disability.
      Carer/niece to Ruth (41) who has Down Syndrome and epilepsy
      Carer to lots of children with various disabilities and medical problems,
      each with their own fantastic personality

      Hi Emily,
      I noticed your post & I was wondering if U could help me too.?I hope U dont
      mind me emailing U asking 4 your advise.I am a "Nana"(grandmother) to
      Austin..he has Cp..nobody has said mild.moderate ect..personally I think he
      is on the severer side.Do U know how I can find out??? He turned 2 in
      June..he he starting 2 say some words like Momma.He says a lot that U cant
      understand.He cannot walk,or crawl or scoot.He says where U put him.He does
      have balance problems too.What I wanted 2 ask U on the sleeping..Is it
      common for the child to wake from Naps or Nite time sleep frequently(like at
      least 3 times)???He cannot move so when he wakes Mom trys to reposition him
      after hrs of sleep in 1 postion.The next time he wakes she checks on his
      covers ect.I was wondering if she should let him cry or keep doing what she
      is but she loses soo much sleep!So I dont know if its the CP causing the
      fussines or terrble twos or him being frightend by something but unable to
      communicate what the problem is????Also do U know if they ever catch up to
      thier delayment?? Like menatlly being like a 9 month old??Just at loss on
      how to treat him & what behavioral actions to take??? Sory if I asked too
      much!Maybe U could forward this to the group too?Thanx soo much!!

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