The only reason why I've got involved with Autism is that our daughter, Jessica, was diagnosed with Asperger’s last July, at the age of 12.
Until then, I had been massively involved with anything related to Down syndrome as our first daughter has got it and I had naively assumed any child that would come thereafter would automatically be immune to any syndrome or disorder!!!
Although it was a massive shock (to put it mildly), it was also like the light switch was put on, the last 12 years flashed in front of my eyes and they all made so much sense. For Jessica too, at last she knows why she feels so different to her peers, why the concept of friendship eludes her, why she struggles with the complexity of socially acceptable and unacceptable behaviours which can vary from one country to another, from one school to another, from one family to another, even from one person to another (even I, the social animal that I am can get lost at times in these social meanders!!), I could go on. The point is, when I first found out, my brain did what it does best: research and see what you can do to help her out. And I did.
My heart, on the other hand is still lagging behind, way behind. You see, with children with Down syndrome, say, or any other VISIBLE difficulties, the “advantage” is that not only do you know from the time they are born and therefore put everything in place for that special journey, but ALSO everybody else knows straight away just by looking at them and excuses those children for whatever they’re not doing right, lets them get away with just about anything. And they do, bless them, get away with so much…
However, when it comes to children with difficulties that are NOT visible, well, bless them too because frankly they don’t get away with much! Not with parents they don’t. At least not until the parents realise it is not just a personality trait, or a phase they are going through and will grow out of, or it’s “the middle child syndrome”, or it’s because she’s got a sibling with special needs, or it’s because we’ve moved so many times, or any excuse under the sun, because any excuse is better than the fact that something is not quite “right” with your child. Right?
And in that time capsule, from the time your child is born and you finally find out there is a reason why they are the way they are, well, there can be so much tension, so much frustration and so many misunderstandings from and between the parents and their child. So much wasted time and energy. Especially when that child is doing well at school and seems to just get on with everything that is thrown at her! If you’re lucky, that time capsule is short (it’s all relative, to me 12 years is a very long time but on the other hand, some others never get diagnosed or get diagnosed very late in life!!).
Now, they don’t get away with much from the rest of the world either, let me tell you. Bad parenting will always be the first culprit to that awkward sentence, that awkward behaviour or that social slip. Why? Because the rest of the world can’t SEE any visible signs that that child is actually DIFFERENT. Just different.
You can’t blame other people for passing judgment, we are all guilty of it at one time or another and to be honest, I do believe that bad parenting is to be blamed for a lot of children’s socially unacceptable behaviours. We are only human.
I’m trying to get to the point, I promise.
All I’m saying is, please try and keep an open mind. Not just with other children (or adults) who are not visibly different, but also with your own children. I so wish I had noticed earlier that Jessica was actually different and not just a bit difficult. The diagnosis didn’t change Jessica, she doesn’t need to be changed, she is a wonderful person with a beautiful soul. What the diagnosis did change was tremendous and so wonderful: the dynamics of the relationship she has with us is completely revolutionised, we finally GET her, and that’s a relief not only for us but for HER! So much less tension and frustration at home! As far as she is concerned, she now understands why she feels like an alien at times and that there are a lot of people just like her in our world and that everything will be just fine, everything will be just fine…
Now, The Autism Trust, has got a long term vision that parents of children/teenagers/young adults on the Austism Spectrum Disorder can only dream of. A centre where you could have your child diagnosed, and/or go to for support and advice once your child has been diagnosed, and/or take your child for various therapies to help him/her, and/or take your young adult for vocational training in an environment that is adequate and autism-friendly. Unfortunately, right now, the Autism Trust can only afford to work its magic with just 9 very lucky young adults with ASD. They could do so much more if they had more funds, so many dreams that parents with children with ASD want to see fulfilled.
And that is why I will walk those darn 106km, to enable those 9 yound adults to carry on at the Autism Trust and to enable many more to join in the future.
Thank you for your help. xxx
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