help me help my Godson please?

[madmomma]

My darling Godson is 3 and has a kind of SN that I don't fully understand. I really don't want to ask his parents about his condition because it's so difficult for them to talk about. He was born unexpectedly breech and didn't breath for quite a while so cooling treatment, special care for weeks etc. He never learnt to swallow. Initial brainscan showed extensive damage and he had lots of seizures. Docs gave a very dark prognosis of him never walking, talking, being continent etc etc. Then when he was 2 they did another brainscan which showed no damage whatsoever, and they said the first one was indecipherable. They found that the problems he has are to do with something muscular, but they don't know what. Apparently there are so many muscular disorders and his isn't a common one but they don't know what it is or what to expect. He can walk but no speech and he's tube fed + can't swallow. (specialist advised against feeding him orally at all, but mum + dad feed him tastes of stuff as a quality of life measure) The problem is I don't know what I can do to help him. His Mum is so self-sufficient and wouldn't dream of asking for anything, but I'd love to be able to make a difference to him. They have plenty of babysitting from their parents and he has a school place so it's more him that I want to help rather than them, if that makes any sense? I wish I knew what would make him happy or help his development. Was wondering if any of you guys could advise? Thanks for reading.

[TheLightPassenger]

Agree with zz, ask his parents what he enjoys most. Generally speaking ipads and other touchscreen tablets are a massive boon for kids with speech problems, both in terms of communication software and games, some more educational than others but he may well already have the techy stuff.

[mymatemax]

Tbh I think the best thing you can do is just do what you would normally do if he has no sn. Take him to the park, swimming, have fun. I love my days out with my god daughters they are nt but as they are a little older its amazing what they confide while shopping. Enjoy your time with your godson, it doesnt have to be about his sn, you will help him just by being there and part of his life

[madmomma]

Thanks for your replies x
zzzzz no not spiritually, just as a friend.
thelightpassenger no I don't think he has a tablet - in fact I know his Mum was going to buy one but dithered over the money. I think I'll put some cash to it for his bday - thanks for that.
mymatemax yeah I do that stuff - we've just been away with them but sometimes I just don't know how to bring him out of himself.

[TheLightPassenger]

Sounds like you are part of his and the familys social life anyway, and dont underestimate that! In terms of connecting with him, i would generally say follow his lead and you wont go wrong. The ican and hanen websites and teachmetotalk and superduperinc websites will have decent general advice about language delay as well if you are interested