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Spina bifida hydro and social skills

3 replies

Rmbm · 09/01/2019 20:14

Hi everyone.
My ds has spina bifida hydrocephulas neuropathic bowel amd bladder. Wears splints to walk.
Went to do his washout tonight and just as we starting he looked upset I asked him what was wrong and he kept saying nothing. I tried to change subject and light heartily said how was school who you play with today he said no one speaks to him in his class. He no friends. I asked why and has anyone said anything nasty he says no they just don't speak to him .
I tried talking to him about ways we could help he does find having conversations hard, he also doesn't pick up social cues well. We had a talk about him being different and how does he feel about splints, washouts, shunts etc he finds the hardest part the memory loss and and sometimes gets very confused and hard to follow what's going on.
Sorry for such a long rant I really just needed to get that of my chest if anyone any advice id appreciate it.

OP posts:
openupmyeagereyes · 10/01/2019 07:34

I’m sorry OP, that sounds really hard for him. How old is he?

I don’t have any experience of spina bifida as my ds has autism but have you spoken to the class teacher? It seems there’s more they and the school should be doing around inclusion, buddying etc. in general and they should be giving your ds the more targeted support he needs in this area.

Rmbm · 11/01/2019 16:21

Thanks he is 10.
Havnt spoke to teacher much he not very approachable. Going to go to principal.
Need to work on dc though it not just in school he has difficulties.

OP posts:
April2020mom · 22/01/2019 23:53

For this reason I homeschool my son with Spina Bifida and my daughter with dwarfism. We work on their independence and social skills. I gently ask him to make small talk with friends and family members as well. We’ve had discussions about his disability. I’ve also mentioned the fact that he is fully capable. Part of my task is to encourage independence, good communication skills and confidence.

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