Sunday, July 31, 2011

My story

Our son had just turned three when we moved towns, back to our hometown in Queensland. As we struggled to find a daycare centre that was appropriate, we noticed his behaviour starting to change. He wasn't as outgoing as he had seemed to be. His little quirks were becoming bigger quirks. He wasn't the same. I was pregnant at the time and fast losing mobility due to a physical disability, and we decided that the changes were due to stress, understandably. His home had changed, his friends were gone, his mother wasn't as available as she used to be.

We gave it time, and nurtured him as best we could. After eighteen months though, we started to realise that there was more to it than life stress. Something deeper. We discussed it with daycare while he was still there and they hadn't noticed anything out of the ordinary. We discussed it with his new school after he had been there a while, and were given the "new anxious parents" treatment.

At the same time that we were noticing his 'quirkiness', we were also noticing that he was pretty darn good at math. My husband and I debate on whether he taught himself to add up at two or three years, but it was around there somewhere, and it was out of the blue. I'm an early childhood educator and I'd never heard of it before. So while things weren't so great in the sensory department, and we were dealing with constant meltdowns, at least we knew that academically he would probably be ok.

Just after Prep year started, I had the chance to watch Nicky interact with other children. At daycare, he had always done his own thing, aside from one friendship that looked like it would last through to adulthood (sadly, she moved away). Looking at him interact with his prep 'friends' however, it became apparent that all was not right. I had previously worked with children with Autism, and noticed that some of the traits he had been displaying were familiar. Finally, the puzzle started to fit together. His quirks were no longer little personality traits (though I guess they still are), they were symptoms. Part of something bigger, rather than little things on their own. My knowledge in this area was ten years old, so I started doing some research, and came to the conclusion that my son more than likely had Pervasive Developmental Disorder - Not Otherwise Specified. Sometimes known as Autism "lite".

We asked around for advice on where to go from here, and ended up seeing a neuro-psychologist in Brisbane. Lovely lady, and rumoured to be the BEST. After testing, she decided that PDD-NOS was a possibility, but that there was a statistical difference between two areas - one language/speech and the other spatial reasoning. She recommended Speech Therapy to figure out the language/speech side of things and Math Tutoring to keep him interested, as he would be bored at school.

Math Tutoring was a total bomb. We found only one tutor in town, and she seemed to grapple with the idea of "extension" as opposed to "remedial". She dumbed him down so much, it took all of three weeks before the novelty wore him and he was begging not to go back. She did tell me that he would have trouble with the lower half of Yahtzee, so not to bother until he's older. I immediately took him home, and after explaining it once, he got it. No problem. Needless to say, he didn't have to go back.

Likewise, the speech therapist we first saw played games with him. She did no testing, no assessment of any kind. Another total waste of time. We put his name on the waiting list for a private speech therapist. A few months later, I rang them back and asked when it would be likely to happen - I didn't want to 'push in', but his sixth birthday was fast approaching, and he was starting to have trouble at school. I was told that the wait list for our town was still a year or two off, but we could get straight in if we were willing to travel an hour. No problem.

Our first session with speech therapist K, she assessed him. Our second session, she told us that while she was unable to diagnose him per se, she felt he was gifted and had Asperger's. I cried all the way home. Full blown Asperger's. I wasn't expecting that. Gifted too - across the board. K thought that the day we had the test with the neuro-psych, he must have been having an off day, because his scores with her were very high.

We found a psychologist that specialises in gifted children, and still see her now. She did an IQ test with Nicky, and he is gifted. Officially. She also thinks he has Asperger's. Now we're waiting to get in to see a Paediatrician to confirm, and make it official for school etc.

His school has put him into year two for mathematics, but not for anything else. His psychologist thinks that he should go into year three next year. I'm still thinking about it and doing my research. Which is how I came to start this blog. I'm a first year university student, and as such, have access to all manner of professional publications etc - yet I still can't find much in the way of information on children who have Asperger's and are gifted. Having two diagnoses means that each one plays off the other - thus what may be normal for a child with "straight" Asperger's does not necessarily apply to our son, because his giftedness affects him at the same time. It's confusing and frustrating trying to wade through information and find what is applicable to our situation. Of course, even without a "diagnosis", each child is different anyway... So any information that you find, you need to be aware that it might not "fit".

That's my story for now. Please feel free to share your own.

2 comments:

  1. I can relate to a lot of this and only read half of what you wrote here. Our son hasn't been diagnosed as gifted though and I'm not a person with "disabilities" myself. (I heard another way of describing people with disabilities, which focused on their abilities, but I can't remember how the phrase went.) But I have suffered from Depression/Anxiety, which is quite disabling, and was I emotionally unavailable to our son when he was younger, to some extent. Also we were involved in a lot of fertility treatment of varying kinds, and that was VERY stressful and unsuccessful. I wish we'd skipped all that treatment and enjoyed our son more when he was younger, had we known nothing would work!! If I could re-do it, that's what I'd do. What a waste of time, money, energy, which made for quite an emotionally rocky home, a lot of that time.
    And then we moved here... and then there was an episode of DV in my wider family and that was like setting off a volcano in my family of origin and deeply affected our own immediate family, including our son. We thought a lot of his issues were concerning all the changes and the DV.
    But now he has a PDD-NOS diagnosis, which has been described as a "residual" or "wastebasket" category, and seems quite vague. Anyway, at least there will be behavioural support for him and for us, so that is a positive step in the write direction we hope, and an answer to prayer.

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  2. Hi Anne, and thanks for your comment :). As you know, we've been busy the last few months, and I haven't been keeping up with my blogs (and I don't remember getting an email, so shall chase that up in settings!!!). I am hoping to get back into it all a little bit again now :)

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