Aspergers Syndrome: Raising Awareness
As some of you may know last year my son Greg’s was diagnosed with having Aspergers Syndrome. The diagnosis did not come as a surprise to us. In fact, it was very much a relief, as we have always been aware that he is very different from other children.
Getting the diagnosis was a long hard slog and it came at the right time as without it we wouldn’t have had a leg to stand on when he turned eighteen last month.
To be honest, a diagnosis when he was a toddler would have been so much better for him and us, but I try not to dwell on things we can’t change. It doesn’t mean though that when I am telling Greg’s for the thousandth time to clean his toothbrush, eat, drink, change his clothes, that those thoughts don’t briefly pop into my mind. They do and I’d be lying to say otherwise.
Since His Diagnosis…
Things have been a bit easier in some respects.
We have been able to explain to people that Greg’s has Aspergers Syndrome (with added extras). Don’t get me wrong we don’t go shouting it from the roof tops, we have never made a big deal of the way Greg’s is as it’s not the way we are.
Now though, when people ask questions about what Greg’s will do when he leaves school (in June), will he go to University or get a job? We can say that he has Aspergers Syndrome (with added extras) and at the moment is unable to look after himself properly. Ideally he will study an Open University course or something similar online, we shall see.
What We Have Noticed…
And weren’t prepared for is that people are pretty much unaware of what Aspergers Syndrome is and are genuinely interested to know more about it. People we have known for many years have been a bit taken back that they didn’t notice that Greg’s is different, but then why would they? They didn’t really spend time with him and we didn’t really talk about it.
I have had some ‘lump in the throat’ moments bought on by the kind words of others.
It can be so difficult watching your child struggling to fit in, but not knowing how to.
Recently we were put in contact with a small theater group that works with children with issues and who are different. It turned out that the lady who runs it is someone I have known for years, making it far easier to explain about Greg’s. The group meets up once a week and as much as Greg’s stands out with his awkwardness, the other youngsters have excepted him and made him welcome…So far, so good!
The lady in question does not want any money from us either. She wants to give Greg’s the chance to fit in, in his own way…To be a part of something.
Nothing in Greece is easy. Laws change on a weekly and sometimes daily basis, which has made things a bit of a nightmare for us since Greg’s turned eighteen. Lets just say that we have had more than our fair share of running round getting paperwork and legalities sorted for him, so that he can get the limited help that is available to him.
The total strangers that have shown genuine interest as to what Aspergers Syndrome is has left me feeling overwhelmed and just a little vulnerable.
Yesterday a rather hard faced lady who issues the medical books in the IKA office, wanted to know all about Aspergers Syndrome and how it affects Greg’s. Her kind words not only surprised me (as she has never been what you could call friendly), but they honestly bought a lump to my throat.
The Lack Of Awareness…
Has made me realize that instead of keeping what we go through to ourselves, we should be sharing what parenting someone with Aspergers Syndrome is like.
Maybe our experiences will help answer questions that people may want to ask. Maybe our experiences will help another family realize that they are not alone.
And maybe, just maybe my posts could help raise awareness of Aspergers Syndrome.
I am in no way medically trained, I am just an ordinary Mum, who just happens to have a son with Aspergers Syndrome (with added extras).
Aspergers or no Aspergers. We are just an ordinary family.
For anyone who is unaware:
Is an autistic spectrum disorder (ASD). No two people with Aspergers are the same, which is probably why it is hard to diagnose.
Symptoms can include:
- Severe awkwardness with people (not to be confused with shyness).
- An inability to relate to others.
- Taking things literally.
- In ability to think outside the box.
- Lack of eye contact.
- Focus second to none when engrossed in something that interests them. Verging on obsession even.
- Lack of emotion.
- Hard to read facially due of the lack of emotion (Greg’s will never have wrinkles!).
- An inability to cope very well with change.
What I refer to as added extras are the other disorders that can (but don’t always) go hand in hand with Aspergers Syndrome.
Greg’s has a sensory disorder and also a disorder that I think translates to Dyspraxia in English, his thought process gets knotted and he’ll do things arse about face. And his co ordination is totally out ( he is getting better!)..
He also has a myopathy which is a totally separate issue from the Aspergers Syndrome.
Greg’s Opinion On Me Writing About Him…
He really doesn’t mind. It doesn’t worry him and he probably quite likes it really!
Had you ever heard of Aspergers syndrome before?
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