Sobering moments

I have written previously about the fixations or obsessions that many people who are on the spectrum can develop. In Geordie’s case, he has had several over the years — many of which have stemmed from fears. The three worst ones are as follows:

Loud sounds:

For a short period when Geordie was barely two, we would fight a constant battle to get him outside.

Why?   The noise made by a helicopter flying overhead was so loud to his ears it was painful. This one experience developed into a roughly 6-month fear of going outside, lest it happen again.

How did we figure it out?    Another helicopter eventually flew overhead, Geordie lost it.

Why did it stop?   I have no idea. One day he didn’t want to go outside, the next day he was fine.

House is going to burn down:

Again, for a relatively short period of time, Geordie was obsessed with checking our in-floor vents before the heating was turned on. If we didn’t check them all, there was a meltdown.

How did we figure it out?   Geordie eventually told us why he was so worried.

Why?   At some point, Geordie must have heard a discussion (from us or at school, I don’t know) about house fires and the importance of keeping air vents clear.

Why did it stop?   We tried going along with it at first, but then had to go ‘cold turkey’. I held him (restrained him actually) while his father turned the heating on. We sat there for a couple of hours and proved there wasn’t going to be a fire.

If I eat something I am going to get sick:

Towards the end of his Kindergarten year, Geordie landed himself a ferocious dose of food poisoning. He had a week of vomiting. After this came the fear that eating something, anything, was going to make him sick again. He barely ate anything for months and got scarily skinny. Life-threateningly skinny. It is all well and good to say, ‘Why didn’t you just make him eat?’ My response now is, ‘I challenge you to try to make a child with Asperger’s do something they are fearful of. Good luck! If you succeed, I want the formula.’

How did we figure it out?   That’s a no-brainer.

Why?   I have no idea. My only guess is that the gastro made him feel so bad, he was petrified of it happening again and had associated the illness with food and eating.

Why did it stop?   We took him to a paediatrician (who, for the record, made me feel like an incompetent mother who didn’t know about nutrition). She put him on anti-anxiety meds and referred him to a psychologist (who, for the record, made me feel so much better about myself). After a year of anti-depressants and six months of psychologist visits, we finally took Geordie to a restaurant for the first time since he became sick … and he ate.

I have to add here, this was an extremely long road to recovery, and some elements persisted far beyond the success of the restaurant visit; it took Geordie another year to agree to use the school computers (because someone who hadn’t washed their hands might have touched them) and he still will not order food from the school canteen because he doesn’t know who has prepared it.

And right now?

This is where the ‘sobering moment’ comes in. Geordie’s current obsession is that I am going to leave him, or die.

He is older now, and is able to better control his fears and obsessions, but occasionally they overwhelm him.

Late last year we were attending an awards ceremony and, out of the blue, Geordie started to cry. It was uncontrollable, heart-rending crying. He would control it for ten minutes, then start again.

How did we figure it out?   It took several hours of crying, talking, questioning and guessing, and skin-to-skin contact for Geordie to finally tell me, ‘I kept thinking about what would happen if you died.’ Then I cried.

Why?   Again, I am only guessing, but this came shortly after my grandfather’s brother died unexpectedly. We had been talking about how surprised we were (despite his age, he was in fine physical and mental form) while Geordie was in the backseat of the car. We’ve also had a string of deaths in the family (and of friends’ parents) in the last couple of years.

Why did it stop?   It hasn’t yet. I think we’ve only just begun, the crying in a public place was just the beginning. Right now, he needs to know where I am going, what I’ll be doing and when I’ll be back. He needs to sleep with me … every night. If I get out of bed at any point, he is instantly awake. Going to school is not an issue (touch wood) because, as I said before, he is older now and better able to control his fears. I now know for a fact that he doesn’t like me going dragon-boating because he is worried we will capsize and drown.

Where to now?   I honestly don’t know. Every fixation and obsession is a new, and often steep, learning-curve. We have to ride it out and watch for signs (that are not defined) that the obsession is becoming debilitating. A return visit to his psychologist may be on the cards in the not so distant future.

How is any of this different from the experiences of a child who doesn’t have Asperger’s?

Agreed! A lot of ‘normal’ children experience the same fears. The biggest difference is that, for Geordie, his fears often become obsessions and often become debilitating. There is rarely any reasoning or rationalisation that can be done. The obsessions can go on for months, or even years. Sometimes they are compounded with new fears. And, when we think we’ve overcome the hurdle of the latest one … BANG!! … a new one hits us in the gob.

Why do I write about this?

First and foremost, I write about our journey because it is cathartic for me. Writing helps me sort through the jumble of ideas in my head. Sometimes I reread what I have written and say, ‘What an overreaction!’ Sometimes I see a clue that I have previously missed. Either way, writing things down is useful.

The other reason is that someone else might find my experiences and thoughts helpful. Or they might share what I have written with someone else who is experiencing something similar. Or they might know a child who is going through the same thing and themselves become more tolerant of the child and his/her parents.

Despite everything that Geordie goes through, despite the low and frustrating moments, despite the ever-present stress … I would not have it any differently. Geordie is my shining light.

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