monday musings

As you may already know, I am a big fan of the BBC drama, The A Word all about a family dealing with their little boy’s autism.

As an autism family myself I like to use the drama to reflect how it has represented my experiences with Autism. I’ve not written for a few weeks, partly because the drama has followed so many different paths to the autism one and partly because I’ve not really had the time to analyse the episodes. I have decided to write this post though as I now have another reason to write about it. All will be revealed in a moment.

I’ve chosen the title ticking boxes because any parent of a child with autism or any disabilities or learning difficulties will know the relevance. In the A Word we see the family struggling to fill in a form for their autistic boy Joe’s new school. Form filling is something we special needs parents know all about, whether it’s for schools, for assessments or even for benefits for our children. There are forms galore and many of them pages and pages long. It doesn’t stop either. In a later episode we see an older autistic boy, Mark, filling in a form for college. He read out a part of the form he’d written himself, about himself and it made me cry. A small insight into how an autistic teenager feels about trying to fit in with others.

When your child is first expected to have autism then it’s forms that come first. Tick the boxes, fit the structure, get the diagnosis. Only, it’s not so easy, what if your child doesn’t fit? What if you can’t tick the boxes?

This is the situation I find myself in right now, yet again, for the third time. My youngest, my Little Man has been having problems at school and after a meeting with his teacher the other day, she has suggested that we see about getting him assessed for autism.

I can’t say I’ve never thought about it but he just doesn’t tick the boxes. But, no autistic child is the same so even though I have two already it’s still possible to have a third that’s totally different. The thing is, in my heart, I really don’t think he has autism, I think maybe he has an Attention Deficit Disorder. I guess the only way to find out is to get him assessed and that’s probably what we need to get started on.

Both my eldest and Star were different from birth, they didn’t sleep, they didn’t settle, they were mostly unhappy. Then they didn’t fit in with other children, they didn’t play the same way. They were both vocal but difficult to converse with. They both had echolia and vacant episodes. They both had trouble at school which led to them being assessed. They both ticked many of the boxes for autism…yet, they are not very much alike, they are very different characters.

The Little Man was a quiet baby, but clingy. He didn’t like being apart from me or his Dad. He was very floppy and instead being played with he preferred to lie flat on our laps. He didn’t even like sitting up. He did sleep okay but that’s probably because we co-shared our bed with him. We were in a much smaller house with a baby we hadn’t planned for and all our space was taken up, so we had no choice but to share with him. (When we moved house he took the transition to his own bedroom really well!)

He didn’t walk until he was nearly two years old and then he just ran everywhere, the phrase ‘you can’t run until you can walk’ had little meaning to him. He was also a slow speaker. The health visitor suggested that we sent him to a pre-school group for two and half days a week. He was only two and would be all day for two days, meaning he had lunch there as well. It was a difficult decision for me as I’d cared for all my children until they were old enough for nursery, he was still a baby to me. But, it did him good, he soon caught up with all his peers and he even toilet trained while there.

Despite his slow start he has come along really well and is bright, lively and very loving. He cares about everyone and loves to cuddle. Something my older autistic children have never been keen to do. (Although my eldest does have his own way of hugging me and does so frequently.) He’s always had loads of friends and everyone has seemed to like him….until recently.

Suddenly the children he has been at school with for the last four years have turned against him. His friendship list has dwindled massively. A couple of his close friends have now moved to different schools which may have started the disruption but it’s hard to tell, he doesn’t tell us much. He has started being very naughty in class, drawing on walls, desks and chairs, tripping up other children, flooding the toilets and more. Has has zero patience and limited concentration. This continues at home which is why I think he has ADD.

However, he is also a child in a different kind of home with autistic siblings and a disabled mother. He has very limited memories of when I could walk. It must all be very tough on a seven year old.

I really don’t think he ticks the boxes, but let’s bring it on. I’m ready for more forms.

Another point that was brought up in The A Word was whether you would change an autistic child, or wish for them to not be autistic anymore. I don’t mean a cure, but just wish they hadn’t been born that way. This is such a tricky subject and I’m so glad they were brave enough to mention it. Their little boy is different from other children and they face a future with him that they didn’t expect and one that no-one would really wish for. But, if they took away the autism would the child be the same child or would it be like swapping them for a different child? There is so much about autism that is not bad, an autistic person can be very loyal and truthful. The autism becomes part of their personality and with all the awareness these days I’m sure life will be better for them in the future. I can see autistic people fitting into jobs, marriages and leading a relatively normal life, in fact many have already. Then there are those that are on the higher end of the spectrum that will never lead a ‘normal’ life. It’s so difficult, because taking away the autism is taking away part of the child. No-one wants an autistic child, but once they are in the family everything changes and whether it’s for better or worse the only thing I know for sure is that everyone is different.