Some people comment “It must be so difficult for you as a parent” My answer is always the same… “We’ll, I don’t really know any different”
You see, your born with Aspergers Syndrome and given little man is my first child it means I’ve been parenting a child on the autism spectrum for some 12 years now. It’s not like he suddenly got it and as a result everything had to change! You adjust from child free young women to mum and you adjust in the way that works for you and your child regardless of any condition or disability.
Ok, that doesn’t mean we don’t have difficult days… God only knows we do! But we have good days too.
The thing is, little man isn’t sick, his not got a disease but a condition. His a child that is very able he just struggles within certain areas of life but is able to learn skills to make these areas more comfortable.
There are some very difficult challenges that come from parenting my little man, the lack of sleep is most probably one of the hardest. But then so is watching him become extremely anxious and upset and being powerless to fix it.
I’ve mentioned before that for us the “label” isn’t an issue. It’s my opinion that many families need to acquire a formal diagnosis to open doors to services (that even then you have to battle to obtain them). Autism is a spectrum and although some families don’t feel the need to seek an official diagnosis, many others do.
However, there are some downfalls of that diagnosis and that’s the way others suddenly treat your child. We found ourselves fighting a discrimination case that we brought against Little man’s old primary school as he was forever excluded, bullied, isolated and more. The good thing the label did do, was give us the grounds to bring a case and ultimately win it.
The truth is the official diagnosis helped us get little man the education and treatment programmes he needed! It didn’t change Little man, he was still the same little boy he was the day before diagnosis… Yes he had Aspergers he just didn’t have Aspergers on paper!
Little man with baby brother Harley now 2
In all honestly, life is much harder when your child has Aspergers but mainly because the system… It’s the system that needs fixing not the child.
Early intervention is extremely important as we all know. Nonetheless 18m to 2-year waiting lists to even see a child paediatrician is just diabolical! It’s in this space of time your child starts experiencing certain difficulties but has no access to the appropriate services! By the time he has the diagnosis the difficulties are now boarding on extreme yet your waiting another 18 months for an assessment for recommended treatment of appropriate programmes.
Little man’s siblings do often find things difficult especially Alice-Sara who has often experienced violence at the hands of her brother and his unpredictable behaviour. Yet, she has always been a sister to a brother with Aspergers and although this doesn’t make things different its still all she knows.
Another sibling war
We get on with things… We are presented with problems such as that above we tackle them and we keep on tacking them in till improvements are made. Sometimes these are made quicker than others.
I’d be lying If I said little man’s Aspergers didn’t affect us as a family… Of course it does! But life isn’t unbearable, it isn’t a total display of darkness. Days spent full of meltdowns and distress. Sometimes Aspergers doesn’t come into it! Not everything he does is down to an Aspergers trait, sometimes his just having an almost teenage moment and although behaviour can seem challenging its just that of being a child growing up and having a moment of hot headedness.
Aspergers is apart of little man but it doesn’t define every aspect of his personality and even when it does it doesn’t have to be in that of a bad way.
Aspergers makes little man more goal orientated and rule bound which can be an extremely beneficial trait for a young boy. He is passionate and honest (most of the time) and very intelligent in many areas.
Parenting little man has also made me change as a person. It’s introduced me to a whole new way of thinking. It’s given me drive and passion, opening my eyes to what it is I’m good at and what I want to do with my life.
It’s brought me here to this very blog, its got me writing, sharing something that’s important!
We’re happy and although somedays we may seem as though we are not! We are… We are happy!