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Racing For Autism

February 7, 2011 By

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?

Filed Under: autism, running Tagged With: , , , , , , , , , ,
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I Am Autism

February 5, 2011 By

I’m having a bit of trouble writing today. The why’s are not important – suffice it to say that my mind is very unsettled. It cannot land on a single thought and stay there. It’s more like a butterfly, flitting around from here to there, alighting on one thing and staying there for but a moment before it takes off and flies somewhere else. They are elusive today, my thoughts are. Butterflies can, at times, seem lazy. They can seem almost laid-back, drifting and wafting rather than actually flying. But appearances are deceiving: despite the oft-times calming nature of their flight, butterflies can be very hard to catch.

I cannot catch my thoughts today.

So instead of actually trying to write something coherent myself, I want to share something that was emailed to me. It is quite profound, and obviously, it strikes quite a chord in me.

I Am Autism
By Marty Murphy

Hello. Allow me to introduce myself to you. My name is autism. Perhaps you know
me or know of me. I am a condition, “disorder” that affects many people. I
strike at will, when and where I want. Unlike Downs Syndrome or other birth
“defects,” I leave no marks on those I strike. In fact, I pride myself on the
ability to infiltrate a child’s life, while leaving him or her strikingly
handsome. Many people may not even know I am there. They blame the child for
what I cause him or her to do. I am autism and I do as I please.

I am autism. I strike boys and girls. infants and toddlers. I find my best
victims to be boys around the age of 2, but any child will do. I like children
and they are always the true victims, though I take hostage the others in the
child’s family as well. It is a bit like getting two for the price of one. I
affect one child and “infect” the entire family.

I am autism. I strike rich and poor alike. The rich combat me with education and
therapy. The poor shut their children away and cannot afford to fight me. I am
able to win in the lives of poor children more than I am those of the wealthy,
but I will try to take root anywhere.

I am autism. I am an equal opportunity disorder. I strike whites, blacks,
Mexicans, Ukrainians, Russians, Poles, Slavs, Japanese, Koreans and Fins. In
fact, I strike everywhere on Earth. I know no geographical bounds.

I am autism. I do not discriminate based upon religion either. I strike Jews and
Christians, Muslims and Buddhists, Atheists and Agnostics. I do not care what
religion a person is or what beliefs he may hold. When I strike, there will be
little time for any of that anyway. When they find me, they will question
everything they believe in, so why would I strike only one group? I have
affected followers of every religion on the planet.

I am autism and I am strong and getting stronger every year, every month, every
day, every minute and every second. I am concerned that money might be allotted
to combat me and my takeover of children, but so far, I have little to fear.
Some countries like Kuwait, are spending quite a bit of money to assist those
who I have targeted and some, like the United States, would rather spend money
on such ludicrous things as discovering the number of American Indians who
practice Voodoo, as opposed to combating me. In an atmosphere such as that, I
can flourish and wreck havoc at will. In places such as that, I rub my hands
with glee at the problems I can cause to children, their families and to the
society at large.

I am autism. When I come, I come to stay. I take the dreams and hopes of
families and trample them with delight. I see the fear and confusion in the eyes
of my victims and see the formation of wrinkles, the worries and pain on the
face of their parents. I see the embarrassment their child causes because of me
and the parents unsuccessful attempt to hide their child, and me. I see tears
the parents cry and feel the tears of their child. I am autism. I leave sorrow
in my wake.

I am autism. I taketh away and give nothing but bewilderment and loathing in
return. I take speech and learning. I take socialization and understanding. I
take away “common sense” and, if I am allowed to flourish, I take away all but
their physical life. What I leave behind, is almost worse than death.

I am autism. I fear nothing except courage, which I thankfully see little of. I
fear those who take a stand against me and attempt to fight me and bring others
into the fight as well. I fear those who try to make it safe and easier for my
victims in the community, and their families. I fear those who push ahead,
despite the fact that I am in tow. I fear the day I will be eradicated from the
planet. Yet, I do not fear too much right now. There is no need.

I am autism and I bet you know me or know of me. If you don’t, you probably will
soon. I am marching forward faster than I ever have before. I am looking for new
children all the time. I am looking for new children to consume and new lives to
destroy. I dread the day I will be looked upon with pity or worse yet,
understanding, for that day, is the day I will begin to die.

But in the mean time I am safe, free to prowl onward. Free to cause the pain and
suffering that I do so well. I am on a mission and have much work to do and
thankfully no one is stopping me yet.

Hello. Allow me to introduce myself. My name is autism. Perhaps you know me or
know of me, if not don’t worry, you will meet me soon.

Filed Under: autism Tagged With: , , , , , ,
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Toy Story: The Autism Family Version

February 4, 2011 By

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.

Filed Under: Children, Play Tagged With: , , , , , , , , ,
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Trains Of Autism Thought

February 2, 2011 By

Yesterday was a momentous day because George played with a train set.

Most parents would read this and wonder what the big deal is.  George, after all, is a seven-year-old boy, and isn’t playing with trains a fairly typical activity for a seven-year-old boy?  Well yes, except that George, as we all know, is far from typical.  Because his autism makes his mind work in very different ways, he does not play with toys in the same way that other kids do.  He never has: from the time he was a very tiny baby George didn’t do all of the stuff with toys that all of the books said he would.

On a side note: this is one of the reasons I know that George’s autism has absolutely nothing to do with vaccines.  It might be a factor for some other kids, I’m not saying it’s not – but it isn’t for George.

Anyway, back to the toys.  I remember having a slight feeling in the pit of my stomach, when George was a baby, that something was not quite right.  I just knew.  When he was at the age where other babies track toys with their eyes, George would stare off into the distance.  When he was supposed to be batting at dangling toys with his tiny hands, he would ignore them.  Unless they were shiny – then he would just stare at them.  He never took an interest in teddy bears; quote-unquote “age appropriate” toys never appealed to him.

I remember once surrounding George with toys just to see if he would react to anything, to find out if something, anything, would spark an interest. For a long time, he just sat there, not even acknowledging the toys.  Eventually, he reached out for the train so he could push the button to see the lights.

George in a sea of toys

The train! The train!

When George did start taking an interest in toys, it was not to play with them in any conventional sense.  It was to line them up or to examine bits of them.  He showed a definite preference for Lego – the straight, symmetrical lines of the pieces appealed to him.  He could make perfectly straight lines with them.

Another favourite was a play table that we had picked up at a garage sale.  There were all kinds of things on this table: big buttons that you could push, large beads that you pushed back and forth, little sliding window things that you would move from one side to another to reveal little pictures.  At one point in its life, this table had had a toy telephone attached to it (rotary dial – just shows how old this thing must have been). By the time we got the table, the telephone was gone, but the piece of string that had attached it remained.  George showed no interest whatsoever in the buttons and beads and pictures.  However, he would spend hours examining that piece of string.

I think the first toy that George played with in the manner intended by the manufacturers was Mr. Potato Head.  He was introduced to Mr. Potato Head by his speech therapist, and it was love at first sight.  It was a wonderful tool for developing some basic speech, and it certainly didn’t hurt his play skills either.  Soon we had a large collection of Mr. Potato Heads, and to this day this is a firm favourite with George.  He has been using Mr. Potato Head pieces in increasingly creative ways.

Mr. Pineapple Head!

Yesterday, George played with a train set.  By “play” I don’t mean that he lined up the tracks without putting them together, that he made one dead-straight line of trains for each colour, or that he lay on his back minutely examining the lettering on the trains.  I mean that he actually assembled the tracks (making a pretty nifty figure-of-eight to boot!), and then pushed trains back and forth on the tracks.  He was absorbed in his play for some time, and on a couple of occasions he even made choo-choo noises.

For any outsider looking in, he would have looked like any seven-year-old boy playing with his trains.

But he’s not just any seven-year-old boy.  He’s my George and I am so, so lucky to have him.

Filed Under: autism, Play, postaday2011 Tagged With: , , , , , , , , , , ,
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How Organization Creates Chaos

January 28, 2011 By

This morning I took my Christmas decorations down.  Yes, I know that it is January 28th, and that the 12th day after Christmas passed some time ago.  I have a history of being very last-minute where this kind of thing is concerned, and this laziness is, in fact, the reason we have an artificial Christmas tree.

When you have a real Christmas tree dropping dead pine needles and crap all over your carpet until February, things can get very messy.

The thing is, it’s always a bit of a hassle, not only to take the decorations down, but to put them up in the first place.  You have to dig out boxes that are buried under eleven months’ worth of crap in the storage room, then you have to clear a space for the Christmas tree and figure out how to make your home look festive without being tacky.  Let’s face it, I ain’t Martha Stewart.  I always envy those people who can casually throw a rug over a sofa and make it look like a designer item.  I can spend an hour arranging the rug on the sofa and it will still look like the results of the room throwing up.

Taking the decorations down is worse.  I mean, when do you get the time?  You’re so busy trying to recover – and get your kids to recover – from the remnants of the Christmas season.  You’re trying to catch up on work that’s fallen behind because no-one was at work.  You’re trying to figure out how the kids’ new toys work so you can show them, and you’re trying to figure out where the hell to put all of this new stuff.  With all of this going on, it’s no wonder my Christmas decorations stay up for so long.

This year, I have had an extra excuse, and its name is Autism.  You see, George’s autism hasn’t really affected the comings and goings of the Christmas decorations before, because George has always been pretty cool about things changing.  I always used to think that for a kid with autism, he was pretty adaptable.

That has all changed.

About six months ago, a fear of routine changes reared its ugly head. Now, understand that I’m not just talking about a dislike for or a resistance to change.  I’m talking about actual anxiety fear near-panic that sometimes gets intense enough to make George throw up. We had such an incident recently involving a mirror, and in that case, Gerard and I felt that the best thing would be to restore the mirror to its rightful place to ease George’s anxiety.

So today I took the day off work, with the intention of making a few changes while George wasn’t around.  They were necessary changes that included taking down the Christmas decorations and getting my scary mess of a desk organized (cluttered physical space translates to cluttered mental space and all that).  The kids went off to school, I took a brief moment to relax, and then I started working.  I got the Christmas decorations down and put away, and then I had a major decluttering session.  All of the boxes that were under my desk are now stored more appropriately, meaning there’s room to put my feet.  My filing cabinet has been rearranged, so my files are actually in the cabinet instead of in a broken plastic container on the corner of my desk, which now boasts two stacking trays instead – one for incoming mail, and one for the kids’ homework and school forms and stuff.

When George came home from school, World War III broke out.

First it was the Christmas tree.  Kiddo was insistent on the restoration of the Christmas decorations, and went so far as to start dragging boxes of decorations out of the storage room.  I firmly took said boxes from him and put them back.  He kept mentioning the Christmas tree, but I don’t think it took him long to realize that he wasn’t getting his way with this one.

My desk proved to be the bigger issue.  The broken plastic box that I had discarded?  George wanted it back.  George wanted it back so badly that he was almost panicking.  The poor boy was looking directly into my eyes – something that he only does when he’s feeling emotionally distressed and is desperate to impart a message to me.  Those eyes, those eyes… They had such pain and fear in them.  They were brimming with tears as George begged me to put the box back onto my desk.

I had to say no.  I’m always one to pick my battles with George.  If it doesn’t matter, I don’t make an issue of it.  I let George get his way from time to time.  But sometimes the battle does matter, and this is one of them.  I need for my home office to be organized.  I always have so much to do, so much admin to keep on top of.  The way I was going, I was paying bills late for no reason other than the fact that the papers were getting buried.  I had to arrange things so that I could keep up with everything.  This is definitely a battle I needed to win.

I felt so conflicted, though.  My friend Amy went through the heartbreak of burying her child yesterday, and here I was, with my child alive and well, and I was allowing him to be sad and fearful and distressed.  What kind of mother was I being?

Even with this conflict going on, though, I knew that I was right.  I knew that this was a storm I would just have to weather.  I needed to rearrange things on my desk, and George needed to see that things could change and he would still be safe.

The storm appears to be over – at least for now.  George was upset for a long time, but gradually calmed down.  He started walking around without looking suspiciously at my desk out of the corner of his eye, and he started jumping on the trampoline, making the kinds of sounds he makes when he’s happy and settled.  When he said, “Charlie is a girl” (with reference to Charlie the Unicorn), I knew that he was OK.

Sighs of relief all round.

At least for now.

Filed Under: autism, Christmas, postaday2011 Tagged With: , , , , , , , , , , , ,
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Make A List, Check It Twice…

January 23, 2011 By

They should provide customized checklists when they issue children to parents.  I mean, think about it.  We pop out these babies, and we follow the generalized instructions in baby books, which pretty much say the following:

  • Whenever the baby cries, shove a nipple in its mouth.
  • Rest when the baby rests.
  • Establish a consistent bedtime routine.
  • Don’t let the baby sleep on his tummy.
  • Cover a baby boy’s willy with a washcloth during diaper changes to avoid being peed on.

There is very little consideration given to the fact that:

  • said nipple is attached to a human being who is capable of feeling physical pain from literally being sucked dry, and besides, baby bites on nipples can really hurt, even when no teeth are present;
  • when the baby is resting, Mom actually has time to take a shower or, you know, eat;
  • babies will throw up on parents who try to impose routines that they don’t like;
  • if the baby is very determined to sleep on his tummy, there’s very little you can do about it;
  • baby boy willies can be very wayward and have a mind of their own.  Kind of like grown-up mens’ willies.

And that’s before you even get into the individual differences between regular babies.  I’m sure new parents would appreciate knowing up front that their child will barf all over their nice new couch, that their daughter will like peas until the age of four and then start throwing them at everyone, and that Junior will be sent to the principal’s office on the first day of Kindergarten.  Don’t you think our lives as parents would be much easier if we knew ahead of time what contingency plans should be made?

Things get even more complicated when you add a child with special needs into the mix.  While I would certainly want the ability to eliminate the things that George finds frustrating or distressing, I would not want to change who he is (who would?  The kid is SWEET!). However, it would have been good to know some things about him right from the beginning.  My checklist for George would include the following:

  • He’s going to bang his head when frustrated, so you are going to have little dents all over your drywall.
  • Baby-proofing devices will not even slow him down, so don’t waste the money.
  • By the time he is five, there will be no such thing as a “good place to hide stuff”.
  • He will find out the password to your YouTube account simply by watching you type it in.  Very visually oriented, these autistic kids.
  • He will be freakishly good on the computer, and he will be counting backwards from 100 in increments of 3 by the age of four.
  • You will need several large boxes to store all of the Mr. Potato Head stuff, but you won’t mind because Mr. Potato Head will prove to be a major catalyst for speech.
  • He will use Lego for stimming.  You will have to make sure you have plenty of the long Lego pieces in pink and yellow.  If you don’t have the same number of pink and yellow Legos, there will be meltdowns.
  • He’s going to know how to fix your DVD player!
  • He’s going to rip down your mother-in-law’s wallpaper and write his name in Magic Marker on her couch.

And what about James?  What would his checklist say?  Let’s see…

  • He’s going to be obsessed with cars so you may as well start collecting them now.
  • He’s going to come flying out like a cannonball at birth and he’s going to just keep going.
  • If he’s anywhere near water and you’re within a thirty-foot radius, you will get soaked.
  • He’s going to go to the emergency room five times in his first four years.  He’ll just be that kind of kid.
  • Don’t let him anywhere near the diaper cream.
  • Don’t let him anywhere near the talcum powder.
  • Don’t let him anywhere near the toothpaste.
  • Be prepared for the fact that he will publicly ask his Granny if she has a willy.

The checklist would also say that the boys will fight like cat and dog but they will be the best of friends, that George will make off-the-charts progress after his autism diagnosis, and that parenting would be the best thing to ever happen to me.

I love my boys.  They are a joy and and adventure.

Filed Under: babies, parenting, postaday2011 Tagged With: , , , , , ,
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Getting Roped In

January 21, 2011 By

"Peep And The Big Wide World" by George

A few months ago, George went through a phase of tying one end of a rope to his ankle, and the other end to the ankle of a willing or not-so-willing participant.  He would then insist that the other person walk with him to wherever he wanted to go. He didn’t care what the other person was doing, so frequently I found myself trying to cook dinner or do the laundry with a kid attached to my ankle.  He also didn’t mind who the other person was, as long as they had two legs and the ability to walk.  Guests to our home would discover that there was suddenly a child at their feet tying up their ankles.

The rope wasn’t always a rope.  Usually, it was a bathrobe cord, which meant that every time I needed to put on a bathrobe, I would stalk around the house cursing while I looked for a cord to tie it with.  When I got the brilliant idea of hiding the bathrobe cords, my mother-in-law’s measuring tapes started disappearing, much to her consternation.

Initially, we weren’t sure what all of this ankle-tying business was all about. The whole thing loosely resembled a three-legged race, but we couldn’t think where George would have been exposed to that.  We’re pretty sure they don’t do that kind of thing at the therapy centre.  Lord, can you imagine trying to do that with a bunch of kids who all have autism?  But we went with the three-legged race thing because we just couldn’t think of what else it could be.

At around the same time, both of the boys were discovering YouTube videos featuring Peep And The Big Wide World, a children’s TV show that remains a firm favourite with both of them. You should listen to the theme song – it is very catchy.  I have to confess that I find the show itself kind of catchy.  Shut up!  I know I’m 41 but I can still be a kid, can’t I?

[youtube=http://www.youtube.com/watch?v=hqikhlUodC8]

To provide context for the rest of this story, I have to give you a brief outline of the cast of characters in this show.
Peep – a baby chick who has just emerged from his egg, who is very curious and wants to explore the world that he finds himself in.
Chirp – a baby robin who has a strong sense of fairness, and frequently finds diplomatic solutions to a problem.  Her biggest ambition is to be able to fly.
Quack – a purple duck who I think actually looks more like a grape with legs.  He is obsessed with wearing a hat (a characteristic he shares with George), and he is very vain and bossy.  He thinks the sun shines out of his you-know-where.

So anyway, one evening I happened to be passing the kids’ computer while they were watching a YouTube episode of Peep.  And all of a sudden the whole rope-around-the-ankle thing fell into place.  In this particular episode, Chirp and Quack somehow find their legs joined by a rope, so they have to go everywhere together.

All of this time, George had been replicating this episode.

Can we take just a moment to consider the significance of this?  George was engaging in PRETEND PLAY!  For a child with autism, this is through-the-roof HUGE! What made it even bigger was the fact that it was pretend play that required a partner.

Hmmm.  Pretend play that incorporates social interaction. To borrow a phrase coined by my online autism support group, Holy Moly Shit! This represents an exciting chapter in George’s development.  He has outgrown this phase now, and he has not engaged in much pretend play since then, but it’s the potential that strikes me.  The fact that he CAN.  If it’s happened once, it will happen again.

Shortly after the ankle-tying phase came to an end, George drew his first real picture (i.e. the first picture that actually depicted something other than scrawls and scribbles).  I was most amused – and highly thrilled – to see that the picture was an illustration of George’s favourite Peep episode.

This kid astounds me. From time to time, he does these amazing things to remind me of what he can achieve if given the opportunity.

Archimedes said it best: “Give me a place to stand and I can move the earth.”

Filed Under: autism, postaday2011 Tagged With: , , , , , , , , , , ,
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Mirror, Mirror, On The Wall

January 17, 2011 By

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)

Filed Under: anxiety, autism, postaday2011 Tagged With: , , , , , , , , , , ,
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15 Random Facts About Me

January 16, 2011 By

Today is one of those days where I don’t really have a topic in mind, so I will steal an idea from a Facebook note I was tagged in, and tell you fifteen facts about myself.

  1. When I was in 5th Grade, my teacher hated me because I was left-handed, and she once kept me after school trying to force me to use scissors with my right hand.
  2. I am adopted.  I was lucky enough to wind up with fantastic parents, and about 15 years ago I got in touch with both of my biological parents.
  3. Based on behaviours in George that I recognize in myself, my developmental history as a child, and some difficulties I experience to this day, I am pretty sure I am on the autism spectrum – an undiagnosed Aspie.
  4. 16 or 17 years ago, I accidentally disturbed a bees’ nest and got stung 67 times.  I am now terrified of bees.
  5. I am allergic to mangoes, which is a pity because I actually like them very much.
  6. At the ripe old age of 41, I have finally realized that I would actually like to be a full-time writer.
  7. I have this weird recurring dream in which I am chased by a giant teapot.  Seriously.  You can’t make this shit up.
  8. Despite my constant whining about my commute, I kind of like my daily subway rides.  It is the only time I get to sit down and read a book.
  9. I bitterly regret not flying to South Africa to see my Dad before he died six years ago.
  10. Every year at Roll-Up-The-Rim time, I drink way too much coffee.  I always think that by the law of averages, if I buy enough coffees, sooner or later I will win the car.  In ten years of trying, I’ve never won anything more ambitious than a donut, but I am an eternal optimist so I will keep trying.
  11. My first pregnancy ended in a loss early in the second trimester.  I always think about that lost life, and how if that pregnancy had worked out, I would not have George today.
  12. I buy lottery tickets every week, because someone wins the jackpot – why shouldn’t it be me?  A few weeks ago, I won $120.
  13. I hate olives and eggplant.
  14. There is only one brand of shoes that I will run in: New Balance.  When I’ve tried other brands I’ve always regretted it.
  15. I think Barney the Dinosaur is the most annoying children’s TV show ever made, followed closely by Max and Ruby.

 

Filed Under: postaday2011, Random Tagged With: , , , , , , , , , , , , , , , , ,
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Letting Go Of The Training Wheels

January 10, 2011 By

In September, my son George will be making the transition to full-time school.  For two years, he was going to school one day a week (he is in the “mild intellectual disability” program at the public school), and for the other four days he was going to the therapy centre to undergo IBI.  For those not familiar with the term, IBI stands for Intensive Behavioural Intervention.  It is intense, one-on-one therapy based on prompting and rewards.  It can be used to teach social skills, daily living skills, routine, pattern recognition, and many other things.

Under IBI, George’s progress was off the charts.  He did so well in the first year alone that he made 23 months’ worth of gains in a twelve-month period.  The second year saw similar improvements, and the tiny spark of hope that had been present in me and my fiance bloomed into this kaleidoscope of possibility.  George can be held up as a shining example of what many kids can achieve in IBI.

After two years, though, it was time to move him to a new level.  The one area where George was not making significant improvements was in his social interaction skills, and IBI, by its nature, does not address this deficit very well.  IBI is one-on-one, and George needed to be in a placement that would involve group interaction.  He was also having trouble following school routines.

He was placed in his current program, which is called School Stream.  He spends every morning at the same therapy centre where he received IBI, in a simulated classroom setting with four other kids.  There is a teacher, and each kid also has his own one-on-one support person. The kids do school-type activities, like raising their hand to answer questions, participating in circle time, taking turns, and playing interactively in the gym.  At lunchtime, the school bus picks the kids up and takes them to their respective schools, where they spend each afternoon.

It’s a great program.  The School Stream in the morning and actual school in the afternoon are complimentary programs that reinforce each other and allow for a crucial element: the transferrence of skills to different settings.  We are seeing George progress in different ways.  His teacher at school has reported that he is now following school routines with very little problem, and everyone involved with him is seeing a big increase in speech.

The kid’s probably never going to be big conversationalist, but he is at least functionally verbal, and for George that is a step that is big gigantic equivalent to man walking on the moon.  Academically, he is performing so well that his teacher is now describing him as high-functioning.

There are still challenges, and there probably always will be.  George has a resistance to change that is problematic. Picture extreme tearful anxiety when a lightbulb burns out or when the coffee machine is three inches to the left of where it should be.  There are various meltdowns and anxieties that do not make sense (to us; they probably make perfect sense to George).  We would still like to see him talking more, interacting more, coping with sibling rivalry in a way that does not involve him headbutting his little brother.

But as hard as the challenges can be, they are overshadowed by all of the phenomenal accomplishments that we have seen in George, thanks first to IBI, and then to School Stream.

George will be exiting School Stream in August, and from September, he will be spending all of his school time in actual school, and our three-year involvement with the therapy centre will end.

This is causing me a great deal of anxiety.

It’s not that I think George is not ready.  It’s that think I’m not ready.

The therapy centre represents an avenue of support that has been a part of my life for three years.  I have had many, many conversations with the therapists and supervisors there, and they have given me so many great ideas and strategies for dealing with various things.  They have arranged parent education evenings that have given me valuable information and new ways of looking at things.  And to be fair, they don’t just discharge their kids and then forget about them.  They do have a support program that lasts for six months after the transition to full-time school.

But still.  This change, while being necessary and timely, represents a letting go of support.  It’s like finding yourself without training wheels when you still feel unsteady on the bike.

And this Mama just ain’t ready for that.

Filed Under: autism, postaday2011, School, Teacher Tagged With: , , , , , , , ,
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