The time has come for me to tell my little one about his brother’s difficulties. He has been asking a lot of questions recently such as “Why does my brother make all those silly noises?” “Why does he do poos in pants?” “Why does he need help all the time.” And (the hardest one to answer) “why can’t I have a kind brother?”
It’s true that his brother is not kind to him most of the time. He is autistic and not able to regulate his emotions. He does not filter his behaviour to please others or to be socially acceptable in the way that most kids learn to. He just says or shouts what he feels. Unfortunately this is often “go away stinky baby” and “I hate you”.
I’m not really sure how to approach this big chat and have been looking for guidance. There are various books that can be used as tools to explain to younger family members, eg ‘My sister is special’ or ‘My brother is a super hero’, but I don’t think that this tack would work in our case. I completely agree that the emphasis on any disability should be on the positive and on the cans not the can’ts, but in our experience, autism is hard. I’m just not sure I agree with the ‘Autism is a super power’ approach. And my little one certainly does not think that it’s super when he is being pinned down, strangled or screamed at.
I would also feel uncomfortable telling him that his brother is ‘special’ – they are both equally special to me and I do not want to give the impression that one is more ‘special’ than the other. I have always felt more comfortable using the terms ‘disability’ or ‘additional needs’ as they are rather more to the point than ‘special needs’ which might be interpreted as skirting around the issue (or even as condescending in some people’s view.)
So what do I say when my little one gets to play nicely with a neurotypical child and then comes to me asking why he can’t have a nice kind brother like ‘that boy’?
I can’t begin to tell him the real reason, which is the brain injury that his brother sustained while being born. He is too young to be told that being poorly can have such devastating and permanent consequences. His brother now has a diagnosis of autism among many other challenges and autism is something that can be slightly more easily explained than brain damage, so I will go with that for now.
The best resources I have found are those that focus on how we are all different. We all have our strengths and talents, our funny ways. And some brains work differently too.
This brilliant video ’Amazing Things Happen’ is the best explanation of autism for children that I have seen. It describes the special wiring of an autistic person’s brain and explains how the brain can become overwhelmed and confused. This video could definitely help develop understanding about sensory overload and the meltdowns that can follow. It also has a great visual description of ‘stimming’ – unusual self-stimulatory behaviours that regulate and calm, such as rocking and flapping, (or beating fists on his chest in my son’s case!)
This is the approach that feels right for us. Yes we are all different. And maybe some of us seem to be more different than others! And that’s ok!