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How to stimulate my son

Sam_ToucanSam_Toucan Member Posts: 24 Connected
My 9 month old son Daniel has dystonic CP, epilepsy and is visually impaired. He is also very passive generally, content to lie there with his dummy most of the time.

I'm concerned about his lack of engagement with the world, and are wondering if anyone had some ideas of things to try? I'm trying all the usual things - picking him up, talking to him, bouncing him on my knee, showing him children's TV - his response is generally either passive or negative (i.e. wants to be left alone)

I shared my concerns with some of his medical team, their response was that he had gone through significant trauma as a result of the illness that caused his CP, and that I need to give him more time to recover from that. Personally I think that's a bit of a cop out.

Sam

Replies

  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    My son is nearly 3 now and has quad cp. At 9 months he was pretty much like yours. Mine can see fine, but was born with profound hearing loss, and at 9 months could not hear anything (he has implants now). All he did was pretty much cry all day. because of CP he was physically very weak and therefore unable to do anything.

    Here is the wisdom I have gathered so far: All kids with CP are physically weak, the more affected by CP the weaker they are. In average they need 4x more calories for every movement compared to a healthy child, but are often bad eaters. Also the muscles and joints are not aligned correctly, which makes physical movement impossible/restricted/ hard/ painful. May well be that your son just finds engaging with the world too hard and not sufficiently revarding to be worth the effort. He may be in pain if he has muscle spasms and none of us are too bothered about things when we are in pain. Also if he is poor sleeper, he may be too tired to try do anything.

    My son used to get just lots of cuddles, that's all he was able to tolerate. because of the load of medical interventions he did not like massage etc, he just associated most touch with pain. I think you picking him up and talking are the right things to do, maybe some tactile things if he tolerates them eg like touchy-feely books/ toys.

    Completely agree that the response from medical team is a cop out. Never stop trusting yourself and only take the advice you agree with.

    Hope you find some of it helpful. x
  • SinskiSinski Member Posts: 16 Listener
    Hi Sam

    Its a worrying and lonely time but as the time goes on and your ask the right questions, your will get ideas on how to proceed. The best sources are other parents. The medical team will say physio, OT and Speech therapy.

    My son is now 3 and has come a long away since being the passive, pretty unresponsive little boy you describe. Things we have tried are Conductive education, BIBIC institute, Hyberbaric Oxygen and I read a book called "What to do about your brain injured child" by Glen Doman. This book gives you some very inspiring ideas. We also do regular physio and like you, loads of cuddles. These early years are crucial so you are already doing the right thing by asking what more can you do. I am three years on and still feel like I am not doing enough. I hope this gives you some inspiration. Stay strong x
  • kingboy25kingboy25 Member Posts: 57 Listener
    Hi Sam
    As a foster carer of many years for children with cerebral palsy I picked up a few tricks by trial and error. One child who was visualy impaired but not hearing impaired would sometimes randomly move an arm so I suspended noise making items above him where his arm would hit them. eventually he waved his arm purposefully and this kept him amused for reasonable periods.
    With another child with Athetosis but hearing impaired I used the same method but with colourful items, sometimes pinned to his sleeve or trouser leg. I also used to prop them up in a moulded seat where they could see what I was doing in the sink or at the cooker etc.
    Some children are naturally more passive just as adults are.
  • KemiKemi Member Posts: 4
    Hello Sam,
    It's incredibly important that you continue to work on stimulating you son. He is at his most impressionable age and whilst on the surface it may seem that not much is happening, you will be providing him with a lot of valuable information by making his environment rich and stimulating.
    You say that he has a visual impairment? Well then I suggest that you overcompensate for this by applying touch, sound and movement stimulus. I suggest you experiment with these stimuli- so for example with touch use different textures applied to different parts of his body and try to notice his responses, similarly with movement and sound. Talk to him constantly, telling him what you're doing or about to do.
    You say he is dystonic? Please make sure that you are moving his limbs in all directions and also try to move his limbs so that he can feel the different parts of his body. This will help him to build up a picture of his body perts and their relationship to each other. For example, take his hands to his feet or his feet to his mouth and his hands to his tummy.
    When he's lying still try to ensure that his body and his head are in a straight alignment and that he is not resting for long periods in a twisted or bent position. This is because we want him to be accustomed to being straight, as a starting point for learning more advanced movement skills.
    Nkem Anagor Mcsp Reg number 052151
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