- 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
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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