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Life: A Poem From A Younger Me

It has been far too long since I posted anything on my humble blog. For most of this year, life has moved at an overwhelming pace. I have barely had time to sleep, let alone do things like personal blogging and running. It is only now, while I’m on a desperately needed vacation in South Africa, that I have been able to catch my breath.

Having been silent on my blog for so long, I’ve been struggling to decide what to say. Then, last week, a very close family friend dropped in for a visit and told me that she had come across a poem that I had written years ago.

When I say “years ago”, I actually mean decades. The poem is dated October 5th, 1986. I was sixteen years old and approaching the end of Grade 11.

And so today’s post is proudly brought to you by a much younger me.

life is like a play

Life

Life is like a play which starts at birth and ends at death
The play is divided into acts –
Each act represents a part of your life
And each act is important however big or small it is
The acts are divided into scenes –
Each scene reveals an element of your inner self
And each scene is as important as every other scene

Just as scenes make up an act
Each element of your character makes up the whole you
And just as acts make up a whole play
You alone can make your life

There are no prompts to tell you what to do or say –
It all comes from you
You alone can decide how you want to play your part
And you alone can play that part

You are not the only actor on the stage –
For the play to be a success
The actors must consider each other
And give each other a chance to speak
And persevere to enjoy acting with each other –
For where there’s a stage there will always be actors

There will never be another you
And therefore the play would not be the same without you
You are a one in a million actor
This is the only chance you will ever have to act in this play
Therefore you should act your part to the full
And give whatever you can to improve the set
So that when the curtain comes down on you
Everyone, including you – a unique, valuable actor
Can smile at what you have given to this play

This is an original post by Kirsten Doyle. Photo credit: Tim Green. This picture has a creative commons attribution license.

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I Feed My Kids McDonalds, And 9 Other Confessions

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During the first two days of my firstborn child’s life, as I lay in hospital with nurses bringing me food and taking the baby to the nursery so I could get some sleep, I had daydreams about how the whole parenting thing would go. I would breastfeed for a full year, and as the baby grew older, I would raise him on a diet of nutritious foods. I would interact with him, play with him, talk to him – he would not need to watch TV. I had visions of lovingly picking him up whenever he cried, never letting him sit for long in a wet diaper, reading to him every day right from the time we brought him home…

I mean, good parenting was just common sense. How hard could it possibly be to be a model mom?

It turns out, very.

What I failed to recognize in those early weeks was that there was no way I could completely give myself over to parenting. There were going to be times when I would have to do other stuff, like laundry, vacuuming and personal hygiene. And let’s face it, isn’t parenting supposed to be at least partly about the fun stuff, like letting your kid smear chocolate cake all over his or her face?

So here are some “confessions” – and I put that word in quotes because it implies wrongdoing that I do not believe I am guilty of.

1. I feed my kids McDonalds. Not every day, obviously, but from time to time I let them eat junk food.

2. I often let my kids watch TV because it’s convenient for me. They’re good at self-regulating their TV time so I really don’t care about that “Don’t let the TV be your babysitter” thing.

3. I yell at my kids. It’s not like I’m constantly screaming, but when they drive me insane I just cannot do the Zen-type of parenting that other moms seem to be capable of.

4. I sometimes reward my kids with material things. I’m not too concerned about whether this is teaching them to value the wrong things.

5. If my kids don’t eat the meals that are put in front of them, I don’t give them an alternative meal. If they go to bed hungry, so be it.

6. I don’t play with my kids every time they ask. If I did, I would never get to sit down for a cup of coffee, write a blog post or take a shower.

7. I don’t always lead by example. I’m completely fine with my kids learning that they have to follow certain rules that do not apply to adults.

8. It’s not a frequent occurrence, but sometimes my husband and I have arguments in front of the kids. It doesn’t bother me: on the contrary, they are learning that every healthy relationship includes conflict and the resolution thereof.

9. I love my kids unconditionally, but there are times when I don’t like them very much. Frankly, they sometimes act like little jerks.

10. I sometimes lock myself in the bathroom to avoid having to share chocolate.

Do these things make me a bad mom? Or do they simply make me human? Do you have any confessions of your own to share?

(Photo credit: Kirsten Doyle)

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Lego On The Roof

As a person who (a) suffers from social anxiety disorders and (b) is a bit of technogeek, I have very few friends who I have actually met in person, and quite a lot who I have communicated with only through the magic of the Internet. It is always a bit of a thrill when I can actually meet – face to face – one of my online friends.

Yesterday I got that opportunity, when a friend who lives a couple of hours away came to visit with her husband and little boy. We all had a wonderful time. My friend is even more fun in person than she is online, and we already have plans in the works to meet up again.

When this absolutely delightful family left, my husband went off to his factory to admire his latest handiwork, and I settled down in the living room to watch Olympic swimming and weave words into pictures.

The kids wandered onto the deck to play, and I was easily able to keep track of them from where I was sitting. All I had to do was turn my head from time to time to make sure I could still see them, and as long as I heard the thump-thump noise of their feet hitting the wooden deck as they ran around, I knew the status quo was being comfortably maintained.

At one point when I looked around, James seemed to be somewhat taller than usual. Also, he was holding a long stick. I was so comfortable in my seat, though, and since no-one was screaming I decided that it would not be necessary to actually get out of my seat. A verbal reprimand issued at reasonable volume should suffice.

“James, put the stick down!” I called.

“But then George will try to get the Lego off the roof,” he called back.

What???

I went out to the deck, and there was James standing on the table, poking at the roof with the stick. I stepped back a few paces and almost tied my neck in a knot in my efforts to bend it far enough, and sure enough, I just managed to make out the unmistakable bright yellow glint of Lego.

“How did it get there?” I asked, perplexed.

“I threw it there,” said James in a matter-of-fact tone, as if this kind of thing happened every day.

There are times when parenting should operate on a need-to-know basis, and I decided that this was something that I did not need to know. I went into the back yard and lugged the ladder onto the deck. I set it up, and stood there looking at it with growing anxiety.

Here’s the thing. I am absolutely petrified of ladders. I always imagine that something terrible will happen while I’m up on one. The thing will collapse beneath me and I will crack open my skull and break seventeen bones. Or it will fall over and I will be trapped on the roof forever, subsisting on bugs and droplets of water from the rain gutter.

If I didn’t get the Lego, however, George would have a meltdown of epic proportions. The fact that I got up on that ladder and made my shaky way to the top is proof that I love my children more than life itself and would do absolutely anything for them.

At the top of the ladder, I had a bit of a problem. Because of where I had positioned it, I couldn’t see where the Lego was. I had only one shot at this, though. Once I got down from the ladder, there was no way in hell I was getting back up again. So I closed my eyes, gritted my teeth, and ran my hand along the bit of roof that was within my reach.

My hand made contact with something hard. Hoping to God that it was the Lego, I grabbed it and tossed it down onto the deck. I then made my nervous way down the ladder, only allowing myself to breathe once my feet hit terra firma.

The thing that I had thrown down from the roof was indeed the offending Lego. I breathed a sigh of relief, half-heartedly reprimanded the culprit (James) and in a rare break from the norm, allowed myself a glass of wine before dinner.

My poor shattered nerves deserved it.

 (Photo credit: aloshbennett. This picture  has a creative commons attribution license.)
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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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Trains Of Autism Thought

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.

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Getting Roped In

"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.”

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Mommy is a pineapple

George has been preoccupied with pineapples lately. About two weeks ago, when we were driving home from somewhere, he suddenly announced that he wanted to go to the store. He wouldn’t tell us which store he wanted to visit or what he wanted to buy there, but he did start giving us directions in the form of pointing and saying “this way that way” in his sweet lyrical voice. We were curious to see where this was going to lead, so we followed his directions and ended up parked outside our regular grocery store. As soon as we walked in, George ran to the fresh produce section and picked out a pineapple. Gerard and I looked at each other, shrugged, and paid for the pineapple.

George spent the remainder of that afternoon proudly carrying his pineapple around.  He was beaming from ear to ear as if he’d won the lottery. The following day he wanted the pineapple cut up. Thinking he wanted to eat some, I obliged, but all he wanted was the spiky leafy bit at the top. That was his prized possession for the next three days. He kept walking up to family members to see how the pineapple top would look on top of their heads. This gave him endless giggles.

A week passed, the pineapple top eventually got discarded, and all of us thought the moment had passed. But then there were demands for another trip to the grocery store. As before, George acquired a pineapple, but this time he had definite plans for it. As soon as we got home, he put the pineapple down on a table and started rooting around in his box of Mr. Potato Head parts.  Five minutes later, the transformation was complete. Plain Old Pineapple had morphed into Mr. Pineapple Head. It had a full complement of facial features, two arms, and a pair of shoes.  The hair, obviously, was built-in.

This was so cool! The kid made a plan! He was immensely proud of his creation, and rightfully so.

George and Mr. Pineapple Head

The following day, I was lying on the couch watching some meaningless show on TV. George was sitting beside me admiring Mr. Pineapple Head, who was occupying pride of place on the coffee table.  All of a sudden, he turned to me with a glint of mischief in his eyes, and proclaimed, “Mommy is a pineapple!”

The air filled with the sound of his glorious laughter, and I bathed in the feeling that this perfect mother-and-son moment gave me.

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Just another kid

One summer’s day about two years ago, I watched a group of children participate in a race. It was in the outdoor play area at the daycare George was attending at the time: it was the end of the day and I had gone to pick him up.  As was my custom, I stayed out of sight for a minute, to watch my child without him seeing me. Lined up against the far fence were five or six kids.  A makeshift finish line had been etched in the sand. At the daycare teachers “GO!” the kids darted away from the fence and scrambled to the finish line.  George was standing apart, shyly watching the action from a short distance away. He looked as if he wanted to join in but did not know how to.

I remember the feeling of immense sadness that came over me. This was such a perfect illustration of George’s autism.  The pool of isolation that he was standing in was almost physically tangible.  It was as if he was trapped in his own little bubble, unable to be a part of the world around him.  Even at the age of four, George was a fast runner: he probably would have won that impromptu little race.

I was reminded of this incident a few days ago, when we were all in Elkhart, Indiana for a long weekend. While out for a walk in downtown Elkhart we stumbled upon a water park. In front of the water park there is a circular paved area: there is a large sprinkler set in the centre of the paving, with a number of smaller sprinklers in a ring around it. When we got there at a few minutes to noon, the sprinklers were turned off but there were a number of people milling around the area with their kids. We had been walking for a while, so we sat down on a bench and allowed the kids to wander around.

At precisely noon, the sprinklers suddenly came to life.  It was like a show of fountains: each of the sprinklers made the water spray in a different pattern.  They were not synchornized: some of them would turn off while others came on, sometimes the water would only spray up to waist-height, other times it would go high in the sky. About fifteen children left the sides of their parents and started playing in the water. The unpredictable nature of the fountains made it a delight for the squealing, laughing children.

James removed his shoes and socks and whipped off his shirt.  He ran straight through the middle of the large central fountain and was soaked within about three seconds.  George was initially more hesitant.  He slowly and deliberately took of his shoes and socks.  We took off his shirt for him, and had a brief moment where he thought this was a cue to strip off completely. He tentatively approached the circle just as the sprinkler closest to him came on, spraying him lightly on the arm. He jumped back in alarm, and for about a minute he simply stood on the perimeter, watching intently. I have no way of knowing for sure, but I have a strong feeling that he was deciphering the sequence of the sprinklers. He’s that kind of kid.  He sees patterns where the rest of us might not even know they exist.

Suddenly George darted into the middle, deftly running between sprinklers rather than right into them. He clearly did not have any interest in getting completely wet like his brother, but he seemed to be OK with a light drizzling. At times he ran around the outer part of the circle with his brother; at times he would stop, stick his hand into a fountain of water, and run away giggling.

George (blue shorts) and James (black shorts)

George in all his water fun glory

It was a magical half hour or so.  For that brief period of time, George was not an autistic child trapped in a bubble of isolation, not knowing how to be a part of the world around him.  He was a regular almost-seven-year-old kid running around having fun with a bunch of other kids. No-one stared at him; no-one noticed anything different about him.  Not once did I have to shoot indignant looks at strangers or launch into my he-can’t-help-it-he-has-autism explanations.

Two brothers, just being kids

For that picture-perfect moment in time, in stark contrast to that long-ago race that he could not participate in, George was just a kid, in perfect harmony with the world around him.

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Moments of connection

Last night I had a hot date with the vacuum cleaner.  The boys had come home with a frightening amount of sand in their shoes, which had of course ended up on the carpet.  When I walked into my living room, I had a moment of severe dislocation.  Had I accidentally wandered onto a beach?  The sand was actually getting between my toes and making them all gritty.  Hence the unscheduled quality time with the vacuum cleaner.

I was moving at speed, like a crazed woman.  Before I could vacuum, I had to ensure that toys were picked up and put away, that there were no socks or other items of clothing littering the floor, that there were no cups lying around (my family uses an inordinate amount of cups, most of which get left under beds, beside the couch, or at random points on the floor).  I was barking out orders to the kids to tidy up their things, and they were so startled by this flurry of activity that they actually did what I asked.  Things were picked up, vacuuming was done, linen was laundered and replaced.  While all of this was happening, Gerard was in the kitchen cooking a very nice dinner.  I have to say, it’s great having a man who can cook!

Finally the work was done.  The floor was clean, the sheets were fresh, the vacuum cleaner was unplugged and put away.  Then George caught sight of a tub of Playdough high up on a shelf and wanted it.  I told him he couldn’t use the Playdough on the grounds that I was in no mood to have bits of Playdough ground into my freshly cleaned carpet.  I should mention at this point that I was somewhat cranky last night.  I hadn’t slept the previous night and I was beyond exhausted.  I was afraid that I would not cope with the idea of getting down on hands and knees to dig Playdough out of the carpet.  Besides, it was so close to the kids’ bedtime and it would have been a bad idea to allow George to start a new activity.

But George was not taking no for an answer.  One thing about autistic kids is that they can be very focused on what they want.  We once endured a four-hour tantrum because George was trying to spell a sentence with his fridge magnets and ran out of the letter “a”.  So I was a little worried about the possibility of the Playdough issue escalating.  George kept repeating, over and over, “I want Playdough, please.  I want Playdough, please.” His use of the word “please” was tearing at my heartstrings.  It sounded so plaintive, so imploring.  It made me feel like I was being mean to my child.

Then George, who is nothing if not resourceful, dragged over the little red plastic kiddies’ table.  The table has a gammy leg that keeps coming off – not to be deterred, George reattached the leg, stood on the table and tried to reach the Playdough.  Needing a quick diversion, I decided to turn this into a game.  I ran to him as he stretched up and grabbed him off the table.  I ran with him through the house and dumped him on my bed.  George, it must be said, was quite surprised and momentarily startled.  Then he saw the laughter in my eyes and started giggling.  “Tickle,” he ordered.  I obliged, and was rewarded with the sound of his laughter.  It is the best sound in the world, that laugh.  George has one of the most infectious laughs I have ever heard.

Next thing I knew, he was off the bed and pulling my hand.  He dragged me all the way to the kitchen, him giggling so much he was almost out of breath, me feigning reluctance.  In the kitchen, he pushed me right up against the counter, then he slowly backed away, making sure I was staying put.  Then he turned around and ran away!  I chased him through the house, following the sound of the giggles, and finally caught him on the couch.  I was tickling him, hugging him, and giving him lots of the deep pressure sensory input that he craves.  Then James joined the fray and we were all tickling each other until we collapsed in a breathless, giggling heap.

As I lay on the couch with my two boys, I glanced up at the shelf and noticed that the Playdough had disappeared.  Gerard, taking the opportunity provided by the distraction, had removed it and put it out of sight.  The Playdough was forgotten, a possible crisis had been averted, and my boys went to bed smiling.

This is why parenting is the best thing in the whole world.  All of the stress in the world dissolves during those moments of connection.