For about a year or more I guess I have consciously been taking opportunities to explain 'disability' and 'down syndrome' to Kit. I have been trying to let it happen naturally and so mentions used to be quite brief - like - the 'Buddy walk is for people with Down Syndrome and the people who love them to let everyone else know how special they are and raise money to help them. Hannah has DS and that is why we go.' and that was pretty much it for a long time. Then it got a bit more involved - probably when he started at preschool and stopped being involved in her EI class and so the focus shifted a bit to how it meant it sometimes took Hannah longer to do things or that it could be a bit harder for her to keep up - but always emphasising the positives and reassuring him that she can do everything everyone else can - just in her own time. I also occassionally named her (and his) friends who had DS - mentioning that they too had DS.
Lately as he gets more inquisitive (and especially since he has heard DH and I talking about schools for next year as well as the fact htat he understands he is now 2 grades ahead of Hannah at swimming) I have even ventured so far as to say it is Trisomy 21 cos of her 'chromosomes' - not going any further particularly but just to indicate it was the way she was born and it isn't a big deal. We have also started to discuss how other people can be a bit afraid of Han but it is only because they don't understand her and can be afraid of difference. Yesterday at the pool I thought I'd see what he said to this - I saw a young boy (8-10) with DS sitting very near the kiddy pool he and Han had been in - so I discretely (I promise!!) said - 'see that boy over there - he has DS' - just to gauge his reaction. 'I know' he said. 'How did you know?' I asked. 'Because of his face' he replied very matter of factly and so with a smile we got up and headed off to enjoy our bucket of hot chips.
I have also started to ask him to be more aware of Hannah's needs - for example we pay a lot of $ for very important speech therapy - he is there during the visit and sometimes he dominates so much that Han couldn't get a word in even if she wanted to - and so I upped the discussions a bit on how she really needed this sort of help and how the 'teachers' and therapists were really there to focus on Han - and while they liked him joining in and helping - it was really for Hannah. It's been a bit hit and miss - cos he is only 4 still after all! But it works sometimes and clearly he is also more aware of some of the implications of it all. I try to not overdo it - I don't want him to absorb my stress about how Hannah is accepted at school but I also can't pretend that he doesn't notice any of it either. I am lucky that he is very happy and sociable and makes good friends easily - I think that will help keep him from taking on more responsibility for Hannah that I want him to at this young age.
He has been making powerpoints for 'Hannah's talking' like the ones her ST does. He tells us what she did at school if she won't, he encourages her with praise and really does a lot of great helping. I am so proud of how he is with her. No wonder they have a beautiful relationship - I want to nurture it and not let it become burdensome for either of them.
Anyways today he started asking about it all again cos we were on our way to EI. I found myself trying to give an accurate but simple explanation of what an OT does. Then he started talking about the other kids there (who he knows too) - and one of his faves who he always loves to play with in particular. So he asks "Does B have a disability?" 'Yes' I replied - he has autism. 'What's autism?' he asks. Now how hard is that one to explain to a not yet 5 year old? This particular little boy is high functioning with good speech and pretty good social skills too especially if it involves running wild and interacting with Kit. Anyway I tried. I emphasised it as a good thing, 'no big deal' (sorry - I don't know how much affected families would agree with that one but I hope they understand my reasoning) and how he and this little boy were lovely friends. He is also starting to further understand what 'disability' means - when that little boy is resisting coming to EI his Mum and I both encourage him by telling him that Kit is there waiting to play - it often works. So I hope my explanation wasn't too whacky - I really have to practice explaining these things at a more sophisticated level without boring the pants off him with technical stuff. I thought siblings stuff wouldn't be useful for him until he was much older (maybe a teenager) - but I think I'll have to play that one by ear too and be prepared as they say!
He's such a great kid - and although I don't want him to grow up too soon - I think he'll be a fantastic man with loads of empathy and openness to other people's needs and their strengths. Quite a catch.