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How did you tell your SN teen about their condition?

(3 Posts)
trulyscrumptious43 Sun 15-Jan-12 16:14:22

I ask because my DS is about to start assessment for Asperger's via the NHS. He doesn't yet know that I have asked for the assessment to take place.
I have always encouraged DS to believe that he is capable of anything he wants in life, and I don't want him to use this an excuse to hide behind (he has v lazy tendencies at the moment).

So what did you tell your child?

calamityboo Mon 16-Jan-12 13:38:04

Hi

What a difficult situation to find yourself in, my ds is 14 and although we always knew he was hearing impaired, we found out last summer that he has a condition called Usher Syndrome which means his sight will eventually go as well. I have agonised over how to tell him about this, and realised that I had to come to terms with it myself, understand the consequences and be confident in the facts.

After I did this (it took some time for me) i then had to work out how to tell him. He understands that at the moment he cannot see at night, his eyes don't adjust like ours and he remains quite literally in the dark, this will eventually start coming in to his daytime vision. I built this up to be a huge conversation that needed to be done very carefully and started to plan what I would say, then about 8 weeks ago, driving him to a panto at night he started asking about the motorcyclist in front, asking how he can see with only one light on his bike. I told him that not everyone was like him, that in fact he was quite rare, that he had a thing called Usher and that is why his eyes and ears are like they are, and that his eyes will eventually get a bit worse. I didn’t plan to tell him, what i am saying is that the right time will present itself when you are least expecting it to, I told him the bare bones of it, just to get started, and now that we have done that it is so much easier to talk about it now i.e. mum why have I got hospital again - because of the Ushers, they need to keep a check on it, the conversation is quite easy now.

I must also say that i am still coming to terms with it, I am registering him as partially sighted next week, but i have found the most wonderful support group on Facebook that have helped and given me confidence and support. I recommend support groups!!

I really hope this helps, all the best of luck. There is no right and wrong way to deal with SN children, you know better than anyone how your ds will react.

Good luck.

Bramshott Mon 16-Jan-12 13:42:11

My friends DS (a little younger than your DS by the sound of it) has this book about famous people with aspergers.

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