All kids look up to those older than them, and Eli is no different. Sam is almost 6, Eli is 3 and Eli wants to do all of the things Sam does: go to school, go swimming, watch Dennis the Menace.
Eli knows Sam is disabled and because chronology is tricky when you are 3, Eli wonders whether he will become disabled when he is older. He doesn’t see this as a particularly negative potential development. He wants to know whether he’ll get a wheelchair like Sam’s, or go to the same school when he’s disabled.
There is something bittersweet about our able-bodied son climbing in to Sam’s wheelchair when Sam isn’t using it, about demanding to sit in Sam’s specialist supportive chair to have his snack. I hope it continues like this – Eli’s relaxed attitude to disability is how we would all be if we came across more disabled people at school and work.
Over the summer we went to the Liberty Festival at the Olympic Park . It was on one of those British summer days when the rain was relentless and so I can’t say we stayed that long, but they had curated a selection of cultural and sporting events which deserved sunshine and crowds.
One of the activities was a racing track, and a basketball court, with loads of sports wheelchairs for people to use. What an incredibly simple idea, but have you come across it before? Giving people the opportunity to just sit in a wheelchair? There were loads of kids trying to play wheelchair basketball and race along the track. Eli was super keen even though the chairs were way too big for him, and off he and Sam went to race (with James pushing Sam). He still talks about it – remembering the time that he got to go in a cool wheelchair and raced against his brother.
I am mindful of this whole business of how you raise siblings of your disabled child. I am pregnant and we expect (fingers crossed, which didn’t go that well with Sam’s birth) another, female, mini-Jess in December. We have thought carefully about this. There are disadvantages to Sam of his parents being spread between other kids, just in terms of time and attention if nothing else – there is less time to model a PODD communication book if another child needs a wee or is in the midst of a meltdown. And there are ever present risks of a sibling feeling like Sam gets the lions share of our attention, of everyone’s attention. Sam’s needs dictate our holidays, mean there are constantly carers in our house, that our lives are disrupted by hospital stays.
Eli is also seeing various things I wish he wouldn’t. He recently asked me to teach him how to click with his fingers. When I asked where he’d seen clicking, he recounted in painfully accurate detail an incident a few weeks ago when a lady (who was in a position of responsibility and should have known better) was clicking in Sam’s face as an apparent attempt to distract or entertain him. When James asked her not to, and suggested she speak to Sam rather than click her fingers directly in front of his nose, she got very defensive and we all ended up having an argument. Eli was with us and was confused by it all, ‘You and Daddy were very cross, and the lady was shouting, and Sam is in our family’. He thinks people shouldn’t click in Sam’s face, but he likes the general idea of clicking.
We hope all of these potential stresses and strains are convincingly outweighed by the massive advantages of there being more people in our gang. Eli loves his brother. He wishes Sam didn’t go to school so that he was at home with us every day. He makes us buy Sam toys so he isn’t left out .
Meanwhile a chatty 3 year old is a marvellous lubricant in social situations and forces all of us, not least Sam, to engage when it would be easier not to. We do all sorts of things as a family that we wouldn’t do if it were just me, James and Sam. And we all laugh more. We now have to charge the stimulator in Sam’s tummy daily so Eli has been comparing Sam to an iPad. Sam thinks this is funny as do we all. (Yes, we overuse screens in our house and Eli spends too much time with an iPad – another consequence of being Sam’s brother).
So let’s hope we can produce another one like Eli. I mean, of course we won’t. Kids have a habit of being their own people as the two we’ve got have shown. But if the next one is even a bit as accepting then it will be okay.