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Autism Through A Child’s Eyes

8 Apr

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

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No More Teachers, No More Books!

25 Mar

George doesn’t want to go to school.

Big deal, I hear you say. He is, after all, an eight-year-old kid, and if I got a dollar for every eight-year-old kid who didn’t want to go to school, I’d be signing up to be the next space tourist.

His reluctance to go to school has escalated, though. It started mildly enough about five weeks ago. I was getting him ready for bed one evening when he said, “School is closed.”

“No,” I said. “School is open.”

He went to school without resistance the following day, but this became a nightly ritual. Each evening, the frequency of “School is closed” statements would increase, but as far as I could tell, there was no anxiety associated with it.

Then March break happened and everything changed. Over the course of the week-long break from school, both of the kids were sick. James recovered fairly quickly, but George had a bad cough that lingered, so I got him some natural-remedy cough syrup.

And what has cough syrup got to do with this story? Well, George hates taking cough syrup. In order to give it to him, I have to wrap him up in a blanket and give it to him with a syringe, a tiny bit at a time so he doesn’t spit the whole lot out at me. So when he reached for the cough syrup on Monday morning, indicating that he wanted that rather than school, we knew that this school aversion was serious business.

The following morning it got worse. George woke up very early and for over two hours, he constantly said, “School is closed. No school. School uh-uh.” All the time, his anxiety level was steadily rising. The pinnacle of all of this was George going into the bathroom and trying to force himself to throw up.

Despite all of this, when the school bus arrived, he got onto it without resistance, albeit looking absolutely miserable.

I sent an email to the school describing George’s behaviour and asking if anything was going on at school that I needed to know about. I didn’t think so: this is George’s third year with the same teacher, and she’s been absolutely fantastic for him. But there is, in all likelihood, something behind this and I needed to either rule out or confirm problems at the school.

Because she is so awesome, George’s teacher called me back within an hour of me sending the email. She reassured me that everything was fine, and that she would not have known that George was having a problem if I had not gotten in touch with the school.

Then she said something that was so obvious that I felt stupid for not having thought of it immediately. She said, “Did this start after you returned from your trip?”

Of course! I had been to South Africa for two weeks by myself, leaving husband and kids to hold the fort at home. The last time I had been to South Africa, when my dad died, George was 15 months old and James wasn’t even a gleam in my eye. My absence was a highly unusual state of being for both of the kids, and George, with his autism, must have had a very difficult time processing it.

And within a few days of my return, he started his nightly “School is closed” routine.  The idea that he is working through some separation anxiety makes perfect sense. The break in routine resulting from March break would have exacerbated the problem.

On the one hand, I am relieved to know that everything at school is fine. But on the other hand, I feel guilty about having been away, even though my presence in South Africa was so badly needed at that time.

I can only hope that with a bit more time and many more hugs, George will feel reassured. And if I ever have to go away unexpectedly again, I hope he will know that I am coming back.

Autism Meltdown: Surviving The Storm

24 Aug

It all started when I turned on the light in the kitchen. My almost-eight-year-old son George sidled up to me and, as usual, said, “Turn off the light soon.”

George hates the overhead light in the kitchen, and whenever it is turned on, he glues himself to my side and repeatedly tells me to turn it off, like a stuck record. I am so used to this that I barely notice it anymore. I just carry on with whatever I need to do, which last night included unpacking and reloading the dishwasher.

Uh oh. The dishwasher. This is another source of extreme discomfort for George. He gets very anxious when it is open, and like a record stuck on a different track, he tells me over and over again to “put it back soon”.

This – the combination of the light and the dishwasher – was a precursor to the explosion that would happen later in the evening.

I was probably not helping, at least, not at that point. I was in an agitated state of mind, having just come home from a stressful workday. I was multitasking too much, juggling about six tasks simultaneously, and getting stressed because neither of the kids would eat their dinner. I was frazzled and fraught. There is no other way to put it.

The explosion gradually built up throughout the evening, and finally erupted when George turned on the kitchen tap and found the water hotter than he expected. He screamed in outrage and started running around in a panic. I caught him, and using an expertise borne of experience, I used my body to restrain him from thrashing around and hurting himself.

I determined that he was not burned or injured, and sat there wrapped around him while he screamed. And screamed and screamed.

It has been a while since George had a meltdown this bad, but I knew that there was not a thing I could do to diffuse it. This was going to last for as long as it lasted, and we were just going to have to ride it out. Fortunately, my husband was home, so I had someone to tag-team with. One of us would stay with George, while the other would comfort our younger son James, for whom these meltdowns can be mysterious and frightening. Every thirty minutes or so, we would switch kids. Anything else that either of us had planned for the evening was abandoned.

After two hours or so, George finally started winding down. My husband and I cautiously allowed ourselves to breathe. He went back to the work he had been doing on his computer, and I went into the kitchen and made a cup of tea. I got the kids into their pajamas and gave them their bedtime milk. Because they were both still unsettled, I allowed them to chill out on the couch for a while before going to bed.

The period of relative calm turned out to be the eye of the storm.

The dishwasher had been running in the background without anyone paying attention to it. George, with his super-sensitive ears, heard the quiet click that heralds the end of the dishwasher’s cycle, and just like that, he was off again. For another hour, this poor child was experiencing an emotional storm that I felt ill-equipped to help him weather.

The worst part of all this was not the screaming. It was not the panicked running around and frantic scrabbling with the dishwasher. The worst thing by far was the look in George’s eyes. He kept looking directly at me, trying desperately to communicate – something. If the eyes are indeed the window to the soul, then my son’s soul was frustrated, unspeakably sad, desperate – almost tortured. It broke my heart to see him that way, to see him in such obvious pain and to be unable to help him.

Much later, when everything was finally quiet and when the entire household (sans me) was asleep, the question of why kept running through my mind. What happened to trigger the worst meltdown we’ve seen in about a year? Could the light and the dishwasher have suddenly morphed from a source of anxiety to a source of full-on panic? Was the hot water just too much for him to handle? If I had not been stressed and agitated, would the situation have escalated to such an extreme degree? In an interesting theory offered by my mother – one that resonates with me – could yesterday’s earthquake have unsettled George and made him more susceptible to stress?

As with most things autism-related, there are no definitive answers. Every question just spawns more questions. All I can really do is go with my instincts and strive to be the best mom I can be.

(Photo credit: http://www.flickr.com/photos/powazny/3782692376/. This picture has a creative commons attribution license.)

Mirror, Mirror, On The Wall

17 Jan

Before I go into the story of what happened last night, I should set a bit of context.  When Gerard’s Dad died almost eight years ago, we moved in with Gerard’s Mom, who at the time did not want to be alone. We live downstairs, she lives upstairs, and each of us has own own fully equipped kitchen and whatnot, so we can live completely independently of one another and yet still be in the same house.  For a while, things were kind of tumultuous, but now they have settled down and we are all getting along famously.

My mother-in-law – or future mother-in-law, if you want to get technical about it – is making my wedding dress.  The woman is a phenomenon with a sewing machine, and she is going to create something spectacular – far better than anything I would find in a store.  I am not even intimidated by the fact that my wedding is the day after the British Royal Wedding.  My dress is going to be much prettier than Kate’s.

Last night’s drama started because my mother-in-law and I needed a mirror. A full-length mirror that we could prop up against the wall in her sewing room, that would allow me to see the dress in all its full-length glory during fittings.

Gerard and I just happen to have a spare mirror.  I think it was originally part of some long-gone piece of furniture, and for the last three years or so it’s been propping up the wall in an impractical spot in George’s room.  No-one ever uses the thing, so last night Gerard took the mirror upstairs to the sewing room (after the work-in-progress that is the dress had been securely hidden away, of course).

To say that George got upset would be like saying Donald Trump has a little bit of spare cash.

The kid exploded.  This small change to his immediate environment made him go into utter meltdown.  He was frantically running around in circles, screaming, “Put the mirror back!  Put the mirror back!”  It wasn’t angry, tantrummy screaming.  It was the kind of screaming borne of frustration and anxiety.

You see, George doesn’t cope with change.  When the slightest thing changes – a lightbulb burning out, the laundry hamper in the wrong place, the cordless telephone not in its docking station – he gets really stressed.  A few weeks ago we thought our dishwasher was leaking, so we pulled it out to take a look, and this sent George into such a flurry that it was days before he would set foot in the kitchen again.

The mirror being taken away sent him right over the top, in a way that nothing else has before.  I’m guessing it’s because the mirror was in his room; that it was his own space being violated.  It’s not that he looks in the mirror, it’s just that he’s used to it being there.  And when something he is used to is taken away, it represents a wrinkle, an interruption of stability.

At some point during this wild, frenzied activity, George ran up to his Dad sobbing, and beseechingly wailed, “Put the mirror back, please!”  He turned and looked at me, and in his eyes I saw utter desperation and fear bordering on panic.

Some people might argue that we should have stood our ground, that “giving in” to George would set a bad precedent.  They might say that the only way to get George to cope with change would be to desensitize him to it, to expose him to change and weather the storm, no matter what.

But you know something?  Sometimes, it just ain’t worth it.  Nothing is worth seeing your child in that much pain and anguish. Gerard and I agreed that we would just pay twenty bucks for a new mirror, and he went back upstairs, retrieved the mirror and put it back in its place.  When the mirror had been restored, we picked George up from where he had been cowering on the couch, and took him into his room.  He refused steadfastly to look at the wall, but he must have seen the mirror in his peripheral vision, because that heartbreaking wailing came to an end.

At that point, the stress of what he had just been through must have caught up with him.  All of a sudden, he jumped up off his bed, ran to the bathroom, and threw up.  A lot.

I wanted to cry.  My poor beautiful boy was in such a state of stress that he actually threw up?  That is awful. Do you know how stressed you have to be for it to make you physically ill?  No mother wants to think of her child going through that level of anxiety.

I gently cleaned my son’s face and dried his tears, and then I turned out the lights and hugged him as lay in his bed.  Right before he drifted off to sleep, I asked him how he felt.

“Happy,” he whispered, as he closed his eyes.

That’s all a parent really wants for their child.

(Photo credit: Flickr Creative Commons Attribution License)