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Hat Boy

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.

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One Step Closer To Normal

Life is one step closer to normal today.

James has rallied back after his week-long illness and is back at school today. It completely failed to register with my overtaxed brain that today would be the day to send in Valentines cards and treats for him to hand out to his classmates, but I don’t honestly feel too bad about that. I’ve had other things on my mind. In any case, James will no doubt get a lot of attention today.  He is immensely proud of the tiny little bruise on his hand where the IV line went in. He is going to show the bruise to his friends and tell the tale of his hospital adventures. I’d say the kid has earned the bragging rights.

George is still home, but he hasn’t thrown up for about thirty hours. He ate jam sandwiches yesterday, and right now he is digging into the scrambled egg that he requested. He has colour in his face again – a colour other than pure white, that is – and he is chatting away in his own little autie language. He seems happy, and definitely better. He’s getting one more day at home to recover his strength.

Gerard and I are at home as well. Both of us feel a little drained and weak, but we are also on the mend. My system is still very delicate – so delicate that I am, for the fourth day in a row, voluntarily foregoing coffee. Those who know me and my love for caffeine will appreciate just what a sacrifice this is.

Even though I am at home, I am well enough to actually work. Tomorrow I will go back to the office for the first time in almost a week. I’ll feel like Marco Polo must have when he got back from China or wherever it was he went, except that I won’t have boatloads of tea and rice with me.

After my return to work, I will be able to think about the next big thing. Running. Oh, how I miss running. How badly I want to lace up my running shoes and go out in the crisp, cold air and feel the crunching of the snow beneath my feet as I run.

If I try that today I will throw up all over that nice pretty snow. I have to be sensible. It will probably be Thursday or Friday before I try running again, and when I do, I will have to start out slow.

I won’t even care about being slow. I just want to be out on the road again.

And for everyone in my family to be able to go to bed at night without a designated puke bucket on the floor beside them.

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We Survived The Gastro Bug Of 2011

It has been quite a week, one in which both kids made it to the Emergency Room at our local hospital. James’ visit resulted in an overnight stay, which left me feeling exhausted and sick myself. With George, we were luckier. His condition, while similar to James’, was less severe and did not call for any needles or IV lines. We were seen by a really nice doctor, and then sent home with strict instructions on how to orally administer fluids.

Most parents of boys aged 5 and 7 have seen the inside of an E.R. at least once. With this latest visit, James has now clocked up four visits (3 months: hair wrapped around toe so tightly that said toe was turning purple; 2 years: hand placed on rapidly moving treadmill belt resulting in the loss of several layers of skin; 3 years: arm pulled out of joint at elbow by big brother; 5 years: severe dehydration).

George has been somewhat luckier in this regard, having only needed to visit the E.R. on two occasions. This is a good thing – I cannot describe how good. James takes stuff like this in his stride. Sure, he cried when the IV line was put in place on Wednesday night, and he cried when I explained to him that we would be in the hospital overnight instead of going home, but when these things happen, he understands that the doctors are there to make him better. George has a much harder time. His autism makes him resistant to changes in routine, new places, unfamiliar people, and strange smells.

Doctors’ offices are bad enough. Hospital E.R.’s have the ability to send him right over the top. It is a good thing that George has managed to stay healthy and relatively injury-free.

The first E.R. visit, the day after George’s 4th birthday, was prompted by an accident in the daycare he attended at the time. He had been stimming, spinning round and round in circles. The daycare staff were attempting to move George to the centre of the room where he could safely stim without hurting himself, but he lost his balance and fell, hitting his upper lip on the corner of a bookshelf.

The E.R. we took him to was very understanding. We registered him and completed all of the requisite paperwork, and then wondered out loud how we would cope with what was likely to be a long wait. The admitting nurse, realizing that George’s autism would make a hospital wait unbearable for him, told us to go to the donut shop across the street with him. When it was his turn, and when the examination room was all set up, someone would come and get us.

The nurse was true to her word. A hospital orderly came and got us after about twenty minutes, and we were taken straight into the examination room, where the doctor, a nurse, and two other orderlies were waiting. Before George had any clue what was happening, he was placed on the bed, and the orderlies expertly wrapped him up in a sheet like a burrito, so only his face was exposed. The nurse immediately swabbed his face, and the doctor, who was waiting with an already-prepared suture, gave George the single stitch that he needed.

We were in and out of there in less than three minutes. Kudos to all staff at that E.R.

This time round, George had to stick around for a longer time. His utter lethargy, while certainly a concern from a health perspective, definitely helped the E.R. visit go more smoothly than it otherwise might have. He endured the admission tests, with the exception of the temperature check. He was having none of that thermometer business, either at the front desk or in the examination room.

He  allowed the nurse to put a tamper-proof hospital band around his wrist. In the examination room, he tampered with it and got it off (people who make tamper-proof products should really test-drive them on out-of-the-box-thinking auties). I was very concerned about the prospect of an IV line. The kid wouldn’t even keep on a wrist-band. How were we going to prevent him from ripping out the IV line?

Imagine our relief when we were told that IV fluids would not be needed. We were told how to administer fluids, how frequently, and in what amounts. We all got to come home.

*Phew*

A day later, we are all officially on the mend. Well, except for James, who is completely recovered. George has just eaten a jam sandwich – his first real food in three days. I’m no longer feeling nauseous (I still think that was due more to pure exhaustion than anything else). Gerard is a bit more lively than he was yesterday.

And now, hopefully, we return to a “normal” life in the special needs family.

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Round 2

James is home from the hospital. James is fine.

George is now in an E.R. examination room, waiting to be seen by the doctor. IV fluids are being discussed.

He’ll be fine, but I am so looking forward to life being back to normal.

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Racing For Autism

I have all kind of things pinned up on the walls of my workstation. There is the requisite work-related stuff (contact sheets, cost centre codes, month-end dates, cheat sheets on how to use the corporate phone system, and so on). Then, because I am a parent, I have artwork by my kids proudly on display (three masterpieces by each child). I have a card that my coworkers gave me along with a cake to celebrate the dual occasion of my citizenship and my engagement (to clarify: I have the card. The cake is long gone). There is my Cake Wrecks calendar, which is so funny that the tears of mirth streaming down my face make my mascara run (this week’s page has pictures of Valentines cakes with icing messages on them reading, “Sorry for stealing your boyfriend”, “Nobody loves you”, and “I didn’t like you that much anyway”).

Then there is my collection of race numbers. It’s a bit like a brag wall, really, but it’s one that I feel justified in showing off. It feels great to stagger in to the office on the Monday after a race, and pin up a new number. Looking at that number, along with whatever race time was associated with it, somehow makes all of the aches worthwhile. That and the fact that running is just awesome.

My first race after my comeback to running was on September 27th, 2009 – just over sixteen months ago. In those sixteen months, I have run a total of nine races, which collectively covered a distance of 130.3 kilometres or almost 81 miles. This year I will be adding at least another 91 kilometres (56 miles), and quite possibly more.

The truth of the matter is that there is only one race every year that really matters to me. It is the race that got me back into running in the first place, and it the focal point of my racing calendar. Every step I take in training, every other race that I run, leads up to this one. Without this race, I don’t think I would be doing this at all.

It is, of course, my annual Run for Autism, the Scotiabank Toronto Waterfront Marathon, Half-Marathon and 5K.

For several years during my long layoff from running, I tried to get back into it, but there was always a reason for me not to run. When I got that first email from the Geneva Centre for Autism inviting me to sign up for a race to raise funds for autism, I realized that all that had been missing was the right reason to run.

Initially I was going to sign up for the 5K race, knowing that it would be well within reach, but then I thought, “Screw that. Since when do I only do things that I know are within my reach?” I looked at the calendar, did some math, and worked out that in six months, I could just about train for a half-marathon from scratch.

The rest, as they say, is history.

Now I am looking forward to my third annual Run for Autism. I have a lot going on before then – at least four races including the Toronto Women’s Half-Marathon (Shirtless firefighters at the water stations! Free chocolate!). But really, the Autism Run is what it’s all about.

When the going gets tough, all I have to do is remind myself of why I am doing this. Because of a genetic roll of the dice (as I believe) I have a child with autism. Without help along the way, my beautiful boy would be at risk of getting lost in the system, of growing up without any opportunities. Instead, thanks to places like the Geneva Centre, the world is within his grasp. He has a lifetime of challenges, and his life will never be quite the same as most people’s – but along with the challenges comes opportunity.

My Autism Runs are all about raising funds for those services, to ultimately help make the world a better place for George and for other people like him.

Because really, look at him. Is this not a face totally worth running for?

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Toy Story: The Autism Family Version

Last night, my younger son James bravely waded through the treacherous sea of toys in our living room. When he reached the corner he started digging in toyboxes and didn’t stop until he had unearthed this car ramp toy. You use this toy by driving your toy car into this little elevator, which you then raise up until the car is on the flat roof. You can then push the car around on the roof, or send it rolling down one of the two ramps. For a kid obsessed with Lightning McQueen and Doc Hudson (raise your hand if you recognize the references) this toy is like a slice of heaven.

James took the toy to an unoccupied space on the living room floor (i.e. a spot where he wasn’t knee-deep in other toys) and started playing with it. He was having a wonderful time. Lightning and Doc were racing down the ramps, Mater was driving backwards on the roof, and the Dinoco helicopter was flying overhead. It was all very exciting.

The peace was shattered when George came into the room and saw that the toy had been moved. George doesn’t like it when things are moved. He gets anxious, he starts shrieking and insisting that the item be put back. And so all hell broke loose.

George was grabbing at James’ toy, I was grabbing at George and telling him that James has to be allowed to move his own things around, and poor James was crying because of the sudden chaos. My husband succeeded in arm-wrestling George to a different room, where he tried to engage him in distracting activities. I stayed with James and played with him, but the sparkle had gone. James played half-heartedly while listening to George’s cries coming from a different part of the house.

James gave up on his play and said to me, “Mommy, George can put the toy back if he wants. I love him and I don’t want him to be sad.” He ran out of the room and relayed the message to his Dad. Gerard brought George back in, and George put the toy back in its place with James watching. James kept on telling me that this was what he wanted, but he wasn’t fooling me. I could see the sadness and disappointment in his eyes.

How amazing is this child? Despite my best efforts to equalize things, James does on numerous occasions get the short end of the stick because of George’s autism. And yet he is so brave, so giving and caring. He shows a maturity and wisdom that, while touching me to my very soul, makes me feel really sad. Not to mention the fact that it makes me explode with pride at the caring, sharing person my child is growing up to be.

He’s only five, but in some ways he misses out on being like a regular five-year-old. I want James to be able to play with his toys. I want him to be able to race his cars down that ramp, and I want George to be OK and anxiety-free about it.

I want both of my boys to be happy, and I find it so hard sometimes when one of them is happy at the expense of the other one.

What a tricky balancing act.

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Photographic Retrospective

Do you remember the days when we used to take pictures with cameras that required film?  When all 34 pictures on the film had been used up we would take it to the drugstore for processing and pick it up three days later (eventually, drugstores got their own in-store processing equipment and the concept of “one hour pictures” was born).  We would go home and look at the pictures, only six of which were any good, and we would throw them into a cardboard box already containing seventeen thousand other pictures.  Every time we put the box back in the closet we would say to ourselves, “I must buy albums and get these photos organized”, but we would know that the pictures wouldn’t be looked at for at least six years, when the bottom of the box would collapse and all of the pictures would fall onto the ground.

Things are so much easier now.  We just take the picture, plug either the camera or the SD card into a slot on the computer, and ten seconds later the pictures are there for our viewing pleasure.  We print the ones we want to print.  Mostly, though, we make desktop backgrounds out of them, upload them to Facebook, and email them to friends and family.  There are no pesky films that cost a fortune and get all screwed up if you open the camera at the wrong time, no dusty old cardboard boxes that take up space, and no pictures lying around that we cannot bring ourselves to throw out even though the top of the subject’s head is cut off and the red-eye makes everyone look like minions of Satan.

The thing is, we look at the pictures.  If we don’t like them, we can edit them, remove the red-eye, fix up the lighting.  And if we really don’t like them, we just hit the Delete button.  Easy-peasy.  The point is, we end up with pictures that we actually like and enjoy looking at.

And that’s what I was doing earlier today.  I was looking at pictures of my kids from when they were a lot younger and littler, and marveling about how they’ve grown and changed since the pictures were taken.

Here are a few of my favourites…

George, age 3

James' first Halloween, aged 10 months. He was a pirate!

Family picture taken on Gerard's birthday, 2006. George was almost 3, James was 8 months

George (almost 4) and James (19 months)

James, about 15 months

George, aged about 3 1/2 - a rare shot of him looking into the camera

Ah, how they grow up!