First Time Being Made to Feel Different

[Bumblelion]

My daughter who is 4 has a genetic condition called Sotos Syndrome which basically causes overgrowth (she is quite tall for her age and has large feet - size 12.5) and delayed development.

She goes to mainsteam nursery with a statement. I don't think it is that obvious that she is "different" from the other children as one of the mother's was talking about my daughter's helper and asked what her role in the nursery was. I was involved in the circle and said that she was my daughter's helper and the mother said "oh, does your daughter have special needs". When I said that she did the mother said that she would never have guessed which made me feel nice.

I have never felt she is "different" from any other child and I am sure that she doesn't feel any different, but perhaps that is more of an age thing.

One thing I am wondering is when and if I tell her that she has a genetic condition. When is the right age to tell her this as she will have to know sometime. Do I wait until she starts asking? It is not a secret from anyone, and I don't want it to be a secret from her.

At swimming lessons last week, a boy asked why she was wearing a swimming nappy under her swimming costume. He asked if she was a baby and said that he doesn't wear nappies. I don't think my daughter has been made aware by another child that she is different in wearing nappies. How do I answer children who ask these things of my daughter without making her feel different.

Any one else come across any situations like this?

Hi Bumblelion

I've wondered about this too. My DS has a strange shaped head due to a skull deformity and also has mild autism. We talk about the autism in front of him quite a lot and probably will continue to do this as he gets older, although I'm not sure whether he will ever understand what it is. We were advised by a psychologist not to talk about his head shape in front of him incase he develops a complex about his looks, but I'm not sure if we are doing the right thing. I think I'd rather DS grow up knowing that his head looks different and knowing that it doesn't matter (even though to me it does, I don't let him know that), than not realising that he looks different and having someone else point it out to him and tease or bully him about it.

He's also 4 and has limited understanding so it's not really an issue at the moment, but I'm not sure what is the right thing to do really.

Hi Bumblelion. My ds has ASD, and I've brought up the subject of autism to him fairly often in a relaxed kind of way. I realy don't want him to suddenly realise one day that he is different without having had it explained to him, obviously in very simple terms as he's only 5 years old. He also has a 1-1, and I feel that one day he'll be asking himself why he has one, but others don't. It is a hard one, but I do feel it would be easier on the child in the long run if small explantions are made now so it's not going to be such a shock for them as they become older.

My son is almost 6 and has Aspergers (and other problems) He knows he has Aspergers and has a pretty good idea what it is. He tells other people that his brain is a little wonky, his own words.

I often wonder how we'll tell our son that he's different to everyone else - he has Spina Bifida. He'll probably be in nappies for a long time, may not be able to walk very well, or at all, will have to catheterise himself. I think the advantage AND disadvantage with him, is that it doesn't affect his mental capacity, so he'll probably know that he's different before he asks us. It's a tough one!