Autism, brain injury, SEN parenting

My child has a brain injury – please don’t laugh at him. It’s really not helpful..

Once again today, I had to leave the house with my two children and brave a supermarket. ‘It’s a weekday, it won’t be too busy’, I thought to myself. ‘I can do this’. But once again, that turned out to be false optimism. I could not.

We only wanted a pack of sausage rolls and a bunch of flowers! So that my little one would not go empty handed to his nursery graduation party. How hard can it be, I wondered? To purchase those 2 items and get safely back to the car?!

Well the first thing that happened was that my DS (autism, brain injury) ran off banging his chest and not responding to my calls to come back / walk nicely / calm down. As he span and crashed his way up and down the aisles he bumped into various members of the public and their trolleys. I heard myself apologising over and over again as I tried to steer him away from said people and in the direction we needed to go.

“Well. I’m just a bit worried that he’s going to hurt himself” a stern lady berated me. I bit hard on my tongue as I debated what the point would be of trying to begin to explain that I CAN’T STOP HIM FROM BOUNCING AROUND! But that she is blimming welcome to try if she thinks that his chaotic behaviour, poor balance, visual impairment and lack of depth perception and sensory overload must somehow be down to lack of discipline or my failure to ‘rein him in’.

The sad fact is that the complexities of brain injury are hard for other people to understand. It has been suggested to me that I should carry info cards to give to people. Something along the lines of ‘this child has a brain injury’. By way of explanation. The trouble is, I feel so defensive about the constant negative and hostile reaction of others that I can’t help feeling it’s none of their business. And also that they probably don’t want to be told.

Perhaps such a card would be useful to explain his needs when communicating as he gets older. To give to medical staff, police officers, bank cashiers etc. But for the judgemental general public, I’m still not quite sure what the right approach is.

I mean, how for example, would I go about distributing said cards when there is a whole crowd of people just stopping to stare. Which is the 2nd thing that happened to us in the supermarket today.

We somehow managed to get to the tills with the two items we needed. My little one was clinging to me in tears because he had been pushed into a chiller and banged his head. As I scooped him up under one arm, DS also decided to cling to my neck knocking me off my feet (he’s getting so big now he’s 9) demanding his hug / share of me.

At the self service till, I did at least somehow manage to scan the items before DS took them and threw them, of course setting off the ‘assistance is needed’ alarm. No assistance was forthcoming, DS was now spinning like a whirling dervish while beating chest furiously like Gorilla Grodd and little one was just crying and climbing up my leg.

As I looked around desperately for the assistant to come and save us, I noticed all the lovely people who had stopped to stare. Two men were openly laughing at us. Just flipping laughing. At his brain injury and all the chaos that has since been following us around. Well let me tell you people something. It’s not very flipping funny from where I’m standing.

My little one never did get to his nursery party. He was too upset because Mummy was hyperventilating, big brother was in trouble as usual for hurting him and he just wanted to go home and never leave the house again.

So, to all you who will stare. Perhaps next time ask yourself, is there something I could do to help this family rather than stand and gape or sneer.

That’s all from me, (the rather unstoic mother today!)

Autism, brain injury, SEN parenting

Your brother is different – how best to approach the chat about Autism with younger siblings?

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.

Image by Andrew Martin from Pixabay

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!