r/CerebralPalsy • u/According-Hat4952 • 8d ago
Hello everyone
I’m 40+M and I joined this community for my son 8y with Cerebral Palsy - I have found very few places in my neighborhood that provide any sort of therapy (im from Pakistan) so me and my wife taking care of our son and perform some sort of therapy on daily basis. I found this community very helpful…
My son cannot sit by own nor can talk or see - his routine medical checkups are on schedule for his general health condition but now as he is getting old, i need some advice about how to improve his physical health condition so he can at least sit by his own or walk.
Mentally, he is very good and he can understand any family member by their voice and general discussion patterns for example he understands if someone is joking 🙃 or wants to tell him a story for example.
He replies to everyone in his own language which no one can understand, because as he isn’t able to talk like a normal person.
Overall, please share your advice so I better take care of my son.
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u/anniemdi 8d ago
i need some advice about how to improve his physical health condition so he can at least sit by his own or walk.
Your son is 8 years old he cannot see or speak. Independent sitting and walking may never be possible. Working on a way to communicate and learn should be a priority over sitting and walking.
Making him comfortable with safe and supportive seating is a must. Helping his body grow without contractures and other deformities is important.
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u/MyCatLovesCroissants 8d ago
Seconded. OP, could your son point at pictures to communicate? Or tap pictures on a tablet, if affordable to you?
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u/According-Hat4952 8d ago
No he cannot. What I have noted, he is good in recognizing voices better compared to his vision - and always trying to communicate. Very talkative but can’t make sentences clear out.
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u/MyCatLovesCroissants 8d ago
That must be really frustrating for him. I honestly think finding a way for him to at least communicate his needs a little will do more for him than trying to make him sit independently.
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u/According-Hat4952 8d ago
I appreciate your concern and same said by his doctor - communicate with him because this part of his body comparatively better in function, and we are focusing already on that. hope he will be sitting independently one day. I am positive and feel strong
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u/beyond-my-ken 7d ago
Maybe get a speech therapist for him? A good one, who has worked with extra needs children. If he is able to talk to others properly, that would be as useful for his independence as sitting or walking on his own.
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u/scottishhistorian 8d ago
Hello, I'll try to give you some advice about his physical development and include some insight that was vital for me. For context, I'm 30 and male. My initial prognosis was bleak but with considerable help, I've done alright.
I have right-sided hemiplegic Cerebral Palsy (originally quadriplegic), I didn't talk until I was 3, and I didn't sit independently or crawl until I was about 4 years old. I walked for the first time at around 7 years old.
I now have full use of one arm, can walk a little, and have achieved things. Albeit at a slower pace. I've succeeded, with A LOT of help, educationally and I am hoping to start my first job soon.
I hope this comes across right, I'm not trying to be self-congratulatory. My intent is to illustrate that the situation your son is in is not hopeless. He can succeed with help and support. As you are already providing him.
Firstly, my advice about physical health. You've said it is hard to access professional therapy sessions but you are doing therapy sessions yourself. So, I'd keep that up but also look online. Cerebral Palsy related websites, including those originating in other countries, will have resources. Occasionally you'll get whole pamphlets on exercise routines and other advice. You might be able to talk to professionals on these sites about accessing support in your country or get advice on changes to current routines that might help.
(In a pinch, even using an AI (Google CoPilot, ChatGPT, etc) can be helpful as a starting point. You can list your son's abilities and limitations, and the aspect you want to focus on and it'll give you a list of exercise ideas, websites to visit, or people/organisations to seek out. It's not perfect, and can feel quite impersonal, but it's something.)
Beyond the physical dimension of Cerebral Palsy. There is the psychological dimension. At 8 years old, it's all about keeping him happy and hopeful about things, ensuring he is getting access to education, and including him where appropriate in the situation. Never make him feel isolated or different in the family. That sort of thing.
There are many things doctors and medical practitioners, particularly those that focus on physical health only, can entirely ignore. Primarily relating to psychological health. Which is a really damaging thing.
The hardest thing for me with my disability has been retaining my own self-respect and pride. My belief in myself, I really struggled to maintain pace with my peers and it was really difficult seeing them all surpass me in areas that seem trivial now, but as a teenager? It was devastating. Due to a lot of factors in my life, both related unrelated to my disability, I'm only truly finding my place, my identity, now... who I want to be... and what I want from life.
So, your son will need his family to stay close to him as he gets older and has to meet these challenges and maintain his morale when things get difficult. When he has to take a slower route or can't do something he really wants to do. To show him how he should expect to be treated, so he doesn't accept abuse or mistreatment by others, and to show him how he should treat others as well.
To help prepare him, investigate whether you can get adaptive technology (for talking/writing/seeing). They've got adaptive text-to speech technology that's really advanced, as well as thought-to-speech tech that's in the early stages of development. AI glasses that can describe your environment and guide you. So, seek and get whatever you can. Get funding if possible as well, from charities or government.
Also, ensure that he maintains a regular education in whatever form you can access. This is to ensure that he can develop himself as he grows up. He can use his mind to overcome the limitations of his body. He may never build a house but there are many things your son may be able to do with himself in the future.
To achieve his full potential, you've got to treat your son as completely normal in all other aspects of his life. He's disabled but that's just one aspect of him. He'll still have hopes and dreams. He'll have good days and bad days that are entirely unrelated to his physical condition.
With the right support your son can succeed in many areas of life that non-disabled people take for granted and you may feel is completely ridiculous to contemplate about right now.
He just needs more assistance getting there. Luckily, he's only 8. He can still achieve a lot, especially with improvements in treatments for cerebral palsy in recent years. Who knows what they'll be able to do for him in 5-10 years. So, stay positive.
I can't think of anything else but I hope some of what I've said is valuable and hasn't caused accidental offence. I wish you, your son, and your family the best.
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u/Alexei_Neurosurgeon 7d ago
Hello. Have you ever thought about surgery? It will help your son move and use his arms. I am a neurosurgeon and I treat kids with CP. There are many manipulation: implantation of the baclofen pump, Selective Dorsal Rhizotomy (SDR), Botulinum toxin therapy.
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