This morning we went to our younger son's school to talk to the professionals who have been involved in assessing him over the past year when it became apparent that, although obviously bright, he was struggling at school.
They were lovely. For every difficulty they discussed, they gave an example of something he had done that was positive. I couldn't help feeling that they were avoiding saying what their conclusions were until they had observed our response to their account of his assessment, so decided to help them out by being the first one to raise the idea that he might have asperger syndrome. I also said that I was unsure, as there was a distinct possibility in my mind that he was showing "learned behaviours" from his older brother, who was diagnosed with autistic spectrum disorder at an early age.
Their relief was palpable. They said that their assessments were pointing towards a diagnosis of aspergers and that, with our permission, they would put his name forward for a more definitive assessment which could lead to an official diagnosis, but that the waiting list for this is currently three to six months. We gave them that permission. To be honest, I can't understand why anyone wouldn't in our position, knowing what we already know.
It was different first time around. That time I felt that it was my fault. MY failure as a mother. MY choice to give him the MMR. MY job to "fix" him without his needing to be "labelled." I now know that MMR had nothing to do with his autism, but I wasted precious time worrying that I was responsible, because I was the one who took him for his vaccinations.
I never thought I was wrong to vaccinate; I would do it again, even if a link was found, because autism is not a death sentence. Autism is not, of itself, a bad thing.
So, although I don't feel as heartbroken, bewildered and wretched as I did first time around, because I now know so much more about autistic spectrum disorders, I am sure that over the next few days, the tears will come. Not tears of despair, or anger, or self-pity but tears of grief for the "normal" child I've lost, despite the fact I never really had him. And I hate that I feel that way, but at least this time around I know the feeling will pass, because in reality nothing has changed. My bright, funny, enthusiastic, sensitive child is still the same as he ever was and no diagnosis will ever change that.
5 comments:
My eldest son has high end Asperger syndrome. I know the troubles he went through being bullied as he was too bright to fit in. He was regarded as weird and sometimes became fixed on knowing something esoteric. He fitted well into computing and went on to be a computer programmer. He is strongly independent and socially awkward.\he is my son.
Thank you jfleming. It's great to hear that your son is doing so well. I know my son will be fine too. We've had some minor bullying, but his school have been very supportive and things seem to have settled down again. He is one of the happiest kids I know and most of his classmates think he's great. That may change as he gets older, I hope not, but he knows we're 100% behind him and always will be.
So who is perfect? Not me and none of my wonderful children, one of whom is autistic.
Hi frank. I'm still getting things straight in my own head when I post them here. It helps me to organise my thoughts. I wouldn't want perfection anyway-it leaves nothing to strive for and would make life incredibly dull.
Hi Jackie - I was alerted to your existence by a mutual friend, @alomshaha (I'm @cromacrox on Twitter). So much of what you say rings true for me and Mrs Crox. Our first daughter Crox Minima (12) was diagnosed with high-functioning Aspergers when she was about 8. I'd resisted the diagnosis for years as I didn't want her to be 'labelled', but it's helped - she got a statement in year 6 which helped her through the first year of High School. She attends Scumbag College, our local comp at which, despite this being pretty rough, she's thriven. Even though going through puberty, her Aspergers has immunized her against most of the usual teenage girlish politics to which her (not Aspie) younger daughter Crox Minima (10) is prone. But, oh boy, do I know about the angst about MMR (we wuz ripped off by that Pugh character who sold us saline rather than single-shot measles vaccines) and, lately, the insomnia ... In the end, we love both our daughters, but I have a special bond with Crox Minor because, being a geek, she's just like her old Dad.
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