(Guest post by Sara Jackson Johnson – Sara blogs at Sara in Between)
This is my second post which has been brewing for a while, ready to be properly baked right here.
My little affected boy has a wonderful big “typical” brother. As is often the way for siblings of any kind of non-typical kids, to Jacob, Louis is just his little brother. In our family as you’ll see from our photo and my earlier blog, it’s a bit easier for him to think that at the moment because Louis does seem just like any other kid (even when he’s not) because the scary medical stuff just kind of melts away in the face of the normal day to day. Despite this I talk and have always talked openly to both my kids about the fact that Louis has a rare genetic disorder. That phrase and 18p deletion are drilled into both of their heads and come effortlessly out of their mouths.
Jacob is in his second year of Infant school at a wonderful local place that I’ve now discovered is the first choice for families in the area with children who have special needs. It also has a very wonderful and truly local mix of cultures, faiths, religions and nationalities.
Both of these factors mean that I’ve been able to watch my son begin to recognise difference and recently, put his own version of labels and explanations on them. So last year he gave a description as Parsi for his friend, helped by the school’s recognition of all the festivals that occur across faiths throughout the year. He also began to see his own colour and others around him, helped by the drawing of a self portrait for his peg. He also mentioned a girl in another class, who I had already clocked as having Down’s Syndrome. He first described how she had someone to look after her in the playground, then that she wore nappies. Which made me want to tell him that she also has a genetic disorder, a little like Louis, and that she needed different things to help her be at school just like everyone else.
Now that he’s a year older and still interested, I’ve given him the name for this little girl’s condition to add to his lexicon. He’s also been talking about two twin boys in the year below that he and his friends chase around the playground daily (don’t worry, I’ve checked, apparently the boys ask them to and nobody tells them off).
He described them as having someone looking after them like the little girl in his year, and when we discussed it, that maybe they also looked a bit like her. But he also said “I think they’re diabetic mummy”. I said if he wanted to know more that he should ask their helper, but careful not to have him seem like a nosy or mean kid, I told him to explain that his brother has a genetic disorder too. He came back without much further information which makes me curious to know why this adult didn’t engage with my curious but clearly sensitive and intelligent boy. Still, that’s for another post.
The next time I dropped him off in the morning, he pointed out the boys as they were driven in and met by their helpers. I could see that it was unlikely they had Down’s and for now he’s stopped wanting put them in a box in his head, but he’s drawn to them and waves and shouts their name every morning.
So whether he labels it, knows what it is or even understands it, my big caring boy is drawn to difference, to different kids and has a desire to reach out to them and try to make them smile. And this makes me know that at least for now, we’re doing something very right indeed.