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10 Things I’ve Learned As An Autism Parent

June 10, 2013 By

2013-02-02 11.04.07

My son George was diagnosed with autism six years ago, almost to the day. Most of what I’ve learned about autism since then has come not from books and websites, but from my own day-to-day life as a special needs parent. Here are some of the more surprising things I have learned over the last six years.

1. I do, in fact, have the patience to be a good special needs mom. No-one would ever have thought so when I was a child. Just ask any of the dolls that I used to have guardianship of.

2. Kids with autism often develop unique problem-solving skills, and I think this is borne from sheer perverse bloody-mindedness. If my kid with autism wants something, my kid with autism will figure out how to get it, in the face of all possible obstacles. Eventually, it becomes more about the principle than about the object. Things like locked doors and passwords are seen by my son as temporary roadblocks, not as actual barriers.

3. Corollary to #2: In my house, there is no such thing as a “safe place to keep stuff.”

4. Hell hath no fury like a child with autism who loses his hat. None of the six identical hats in your closet will do. You’ll just have to turn your house upside down and inside out until you find that hat.

5. If a child with autism gets a urinary tract infection that requires him to provide a urine sample, he will think that he now has to pee in a cup every time. You will have to watch him closely to make sure he doesn’t take any of your coffee mugs or measuring jugs into the bathroom with him.

6. Mr. Potato Head rules forever. We have just started our third jumbo-sized Rubbermaid tub of Mr. Potato Head stuff. When George is 45, he will be in the Guinness Book of World Records for having the biggest collection of Mr. Potato Heads. If he continues with his current trend, he will have about 6000 of them by then.

7. A child with autism can become the household’s unofficial tech support person from the time he or she is three. That was the age at which George literally elbowed me out of the way with an impatient click of his tongue, in order to effortlessly fix the DVD player that I had been struggling with for forty minutes.

8. Having a child with autism is like having a living, breathing GPS that knows the location of every single Tim Hortons coffee shop in a 75-mile radius.

9. Boys with autism are, above and beyond all else, boys. A couple of weeks ago, my almost non-verbal child said to me, “I spy with my little eye something that’s a white bra.” He then lifted up my shirt to peek at my bra and ran away giggling.

10. It is possible for a nine-year-old boy to sit on a can of apple juice.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Humour, Things I've Learned, Wordcount Blogathon Tagged With: , , , , , ,
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Home Is Where The Hat Is

March 31, 2012 By

I cannot say for sure when my firstborn son decided that he had to wear a hat at all times. Looking back at old pictures, it seems apparent that he spent most of his toddlerhood in a hatless state. I don’t remember him ever being resistant to wearing a hat, although from the get-go he was picky about the style of hat that he would allow onto his head.

All I know is that at some point – I’m pretty sure it was during one summer or another, the hat became a permanent fixture. It wasn’t even a gradual progression, like his preference for insistence on striped shirts was. It was an overnight thing. One day, he could take his hat or leave it. The next day, it had to go everywhere with him, even into the bathtub. Even to bed. The absence of the hat became an instant source of extreme distress for him. Taking it away from him would make him scream as if the world was ending. One day, when we forcibly removed the hat to throw it into the washing machine, a complete stranger called us from New Zealand and said that the noise had woken him from his slumber, and had we just removed our child’s kidney?

OK, I made that last bit up, but you get the picture. George will defend to the very last his right to have his hat with him no matter what.

On the surface of it, this may not seem like a big problem, but it is amazing how the full-time presence of a hat can encroach on real life. And so we had to work with George’s teachers and therapists to wean him from the hat, or at least get him to the point where he could do without it for brief periods of time.

Several years later, George is still into the hat. Whenever he outgrows a hat, my mother sends a bigger one from South Africa. We do have hats in Canada, of course, but the ones provided by my mom are so cool, so she is in charge of upgrading the hats.

We are able to persuade him to remove the hat at certain times. At bathtime it comes off his head, and remains out of his reach but always in a place where he can see it. When he is at school, he takes it off and hangs it on the hook in his cubby, only putting it on for lunch and recess. And at bedtime, the hat sleeps on the pillow beside him. To our eternal relief, he now consents (with just a little bit of protest) to having his hat taken  away for the purpose of being washed.

Although he takes it off when he absolutely has to, George still loves his hat and he always has to know where it is.

So if you’re ever in my neighbourhood and come across a shy, sweet boy who doesn’t say much and wears a striped shirt and a hat from Africa, chances are that you’re looking at my beautiful son.

Filed Under: autism, Children, Hats Tagged With: , , , , ,
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George’s New Hat

May 14, 2011 By

When my Mom came from South Africa for my wedding, she came bearing gifts for the boys. Among other things, each of them got a new hat. James wears his because it’s cool, and because none of his friends at school has an “Africa hat”. George wears his because he’s weird about hats. For George, a hat is not just a hat. It’s an essential part of his routine, one that he feels completely lost without.

George’s previous hat was provided by my Mom as well. She mailed it over to me about a year ago, and since then it’s been practically glued to his head (except for the times when I sneak it into the washing machine while he is sleeping). The new hat is identical to the old hat. It’s got the same “South Africa” lettering on it, and it has the same animal pictures in the same pattern. The only difference is that while the old hat was cream-coloured, the new hat is blue.

For George, switching hats is a big deal. Imagine what it would be like if someone decided to remove your head and replace it with a new one. It may seem like an extreme example, but that is, for George, what switching hats is like. He got so comfortable with the old one, and so used to it, that getting rid of it was an unbearable prospect, one that resulted in meltdowns and anxiety attacks (mostly on George’s part, but a little bit on mine too).

There were house guests galore for a couple of weeks leading up to the wedding, and that in itself was a lot for my routine-dependent child with autism. Gerard suggested that maybe this was not the time to switch hats on George, and I had to agree. So we left it for a while. By last weekend, things had quietened down considerably. The wedding was a week in the past, and the only guest remaining was my Mom.

During a rough-and-tumble moment of play, George’s hat fell off. On a whim, I grabbed it and shoved it into the washing machine (it was starting to smell a little gamey). I took out the new hat and put it on George’s head. Predictably, he went ballistic. Screaming, kicking, tossing the hat away from him, crying with utter distress.

Fortunately, the old hat was not an option. At that moment, it was wet and sudsy and being tossed around in the washing machine.  So there was no choice but to persevere with the new hat.

As George tossed himself screaming around the floor, I maneuvered him onto his back and sat on his legs, leaving his arms free. The hat was on the floor behind him, but within his reach. I looked into his eyes and started throwing out sums at him.

What’s four times five?

What’s three plus four?

What’s twenty minus six?

And so on. Each time I tossed out a question, George answered it. He seems to have a genuine love for numbers, and this technique is proving to be a surefire way of distracting him when he’s upset.

Sure enough, he gradually calmed down. When he started reciting times tables, I knew we were close. And then, slowly but surely, while he was still reciting his times tables, he reached behind him and casually put the new hat on his head.

It was a minor battle, but it was a battle nonetheless. And we won it, me and my boy.

Filed Under: autism, Determination, Hats, Transition Tagged With: , , , , , , , , , , ,
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Hat Boy

February 22, 2011 By

Me and my Hat Boy

George has a thing about hats. He wears them all the time, even when he goes to bed. We have succeeded in getting him to take it off at bathtime, and both the school and the therapy centre have him remove it for his periods of instruction. But when he is at home, the hat is always on his head.

It’s not just any old hat, either. George is very picky about his hats – he will only wear his hat, and if his hat is not available, things in my household get very noisy and fraught as we struggle to keep him from banging his head in frustration. From time to time we have to switch out the old hat for a new one, because – well, you know – George is seven, and seven-year-olds have this habit of growing really fast.

The “new hat days” are traumatic for the entire family, so we tend to hold on to the current hat until the seams start to pop.

However, with age comes wisdom, and we have learned that whenever it’s time for a new hat, we have to get two that are the same. That way, when one starts smelling a bit ripe, we can throw it into the washing machine and let George wear the other one.

We suspect that George wears the hat to gain that slight feeling of pressure around his head. Kids with autism are frequently big on physical pressure, and George definitely falls into that category. He climbs onto the back of the couch and jumps from there onto the floor, because he craves the deep pressure input to his feet and legs. It would make sense for him to want pressure around his head as well.

In addition, though, I think George wears the hat in order to protect his head from being touched. He really, really, REALLY does not like people touching his head. He allows me to remove his hat and stroke his head, or run my fingers through his hair, but after just a few seconds he gets antsy and squirms away.

This is a problem.

For a start, there’s the practical problem of hair-washing. I don’t wash George’s hair as often as I should, because it is just so stressful for him. Hair-washing is a joint effort between me and Gerard, and it has to be planned with military precision, right down to getting my mother-in-law to whisk James away for the duration. Basically, what happens is that I wait until George isn’t watching, and then I fill a plastic basin with water and lay a shower curtain on the kitchen floor. Then Gerard uses his arms and legs to immobilize a screaming George, and I wash his hair as quickly as humanly possible.

It sounds barbaric, and I always feel so bad that I end up in floods of tears, but it is the only way we can wash his hair.

When people hear of the difficulties, they say to me, “Just keep his hair short”. If only it were that simple. This kid won’t let us wash his hair normally – why would anyone assume that he will let us anywhere near him with a pair of scissors or any other haircutting device?

Cutting his hair is as traumatic as washing it. So what I have to do is creep around my own house in the dark like a burglar, gingerly remove George’ s hat from his head, and then tentatively cut whatever bits of it that I can reach while he is sleeping. Sometimes it takes up to two weeks to complete a haircut because George tends to lie down the same way every night.

We may be making progress, though, thanks to the wonderful folks at the therapy centre that George spends four mornings a week at.

The therapists had me complete a sensitivity questionaire, describing the issues with washing and cutting his hair, and two weeks ago they started a desensitization program. This morning George’s therapy supervisor called me to give me an update.

“We combed his hair,” she said.

“What, ALL of it?” I asked, incredulously. Usually my hair-combing attempts have to be aborted, so each day I start on a different side of his head, just to ensure full coverage every two days.

“All of it,” said the supervisor. She went on to tell me that she had put ear-muffs on George, and that this seemed to help with the sensitivity around his ears.

“He kept on ear-muffs?” I asked. Not sounding very intelligent at this point. Think Village Idiot.

“AND,” continued the supervisor, “We have sprayed his entire head with leave-in conditioner.”

Holy bat, Crapman! Who is this short person and what has he done with my son?

So, it would appear that the desensitization program is working like a charm. It will still be a long time before we can actually wash his hair normally, or cut it while he is awake, but with baby-steps, we will get there.

The staff at the therapy centre are absolutely incredible. Thanks to them, George will be ready for discharge into full-time school (with special ed support) by September.

He might be ready.

Me, not so much.

Filed Under: autism, Hair, Sensory Issues Tagged With: , , , , , , , , , ,