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I never could get the hang of Thursdays

October 21, 2010 By

I’m having one of those days. You know, the kind where you realize, by ten in the morning, that if you make it to dinnertime without breaking a leg and accidentally causing a twelve-car pileup on the highway, it will be nothing short of a miracle. Just one of those days where a lot of irritating little things pile up to create one big jumble of irritation.

I overslept this morning.  By more than an hour. I woke up about ten minutes after I should have been walking out of the house. I should have seen it coming, really. I haven’t slept well for about two weeks, and last night my head was literally buzzing with exhaustion. My body was bound to crash and burn sooner or later.

It was the sound of James crying that woke me up. He had woken up thirsty and no-one had given him his morning milk. Of course they hadn’t.  The customary milk-getter was slumbering away, oblivious to everything, while the customary milk-gettee waited patiently – and in vain. When the sound of the crying pierced my somewhat sluggish consciousness, I glanced at the clock, had about thirty-seven panicky thoughts in three milliseconds (all variations of the same theme, which was: “Oh, crap!”), and flew out of bed.

I got James his milk and warned him that things were about to get really chaotic. Into the bathroom, hair brushed into a big-haired, frizzy mess (no time for the hair-straightener), makeup perfunctorily applied, back into the bedroom, clothes thrown on, brief pause in frenzied activity for the purpose of breathing. Somewhere during all of this I tossed James’ clothes at him and hurriedly pleaded with him to put them on. James, who is used to me being a bit slow and dim-witted first thing in the morning, was stunned into compliance.

As I walked by my desk, I saw a note from James’ teacher with a list of what was needed for today’s field trip to a farm. Quickly, I scanned the list to make sure I had taken care of everything. Yes, I had dug out a pair of rubber boots for James to wear while trudging through the pumpkin patch.  Yes, I had put mitts and a scarf in his bag in case it got cold. Yes, I had supplied a plastic bag for the pumpkin that James would pick out. No, I had not made him a packed lunch.

I never make packed lunches for James. There is a snack program at his school, and he gets lunch and afternoon snack at the daycare. The one day that I actually have to make him a packed lunch (and of course, forget), just has to be the one day on which I oversleep.  Go figure. So I grabbed bread, margarine, and slices of cheese, and somehow managed to arrange all of this into a sandwich without lopping off a finger. Goldfish crackers. A couple of juice boxes.

OK. Packed lunch was made. I was dressed. James was dressed. My travel mug was filled with fresh, hot coffee and ready to go.

Somehow I made it out of the front door with James in tow, fifteen minutes after waking up. If I forgot anything, I don’t know about it yet. I got James to the daycare in time for his breakfast. The transit gods were with me: an express bus pulled up to the bus stop about thirty seconds after I got there. I got to work just twenty minutes or so later than usual.  So, not bad, considering how my morning started.

I returned a couple of phone calls and answered some emails. I reviewed my list of things to do today, and checked my calendar. Only one meeting today. Good. Then I went downstairs to get a cup of coffee and a breakfast sandwich. The same guy who’s always there took my order.  A breakfast sandwich with bacon and a splash of ketchup, on an English muffin. I get breakfast sandwiches once or twice a week, always ordering the same thing from the same person. He could probably recite my order in his sleep. It’s nice. There’s comfort in predictability.

With coffee and sandwich in my hand, I returned to my desk and called Gerard, my husband-to-be. I wanted to know if the lady from our wedding venue had called him back. She had promised to call us this morning to tell us which of two dates we could have the hall for. I have been waiting for this day, waiting for the answer. It all hinges on one guy who had made a tentative booking on our preferred date, to use the hall for a darts tournament. As it turned out, the lady from the hall did call Gerard, but she didn’t have an answer for us. The darts tournament man is not reachable because he’s gone hunting.

Hunting? What is this, The Clan Of the Cave Bear?

Apparently, we’ll get an answer by the weekend. I don’t want to wait until the weekend.  I want to know now. But there’s nothing I can do about it, so I’ll have to wallow in my frustration for two or three more days.

With the phonecall to Gerard done, I unwrapped my breakfast sandwich, looking forward to the comfort and risk-averse nature of eating something that I’ve eaten dozens of times before. And I was bitterly disappointed.

Sandwich Guy messed up. First, there was the state of the muffin, which can only be described one way: burned. The outer edges of the muffin had actually burned to a crisp. The rest of it was just one step away from being charred. I could also tell right away that the ketchup had been left off. There was no tell-tale smudge of ketchup peeking out from the edge. Worst of all, though, is that instead of bacon, my breakfast sandwich had been made with ham. So much for the comfort of familiarity.

I was faced with a dilemma. Do I eat a sandwich I don’t want and am pretty sure I won’t like? Or do I schlepp downstairs to complain and get a new sandwich made?  After thinking about it for a minute, I reasoned that maybe Sandwich Guy was having a bad day too. Maybe he too had overslept, forgotten until the last second that his kid needed a packed lunch, been late for work, and discovered that the provider of much-anticipated information was off hunting like Indiana-Freaking-Jones.  I also recognized that if I actually did go back downstairs, I’d probably be meaner to Sandwich Guy than the situation called for, and I might make him cry. Not to be judgmental, but he does look like a bit of a cry-baby – um, sensitive person.

So I sat at my desk and half-heartedly ate my burned, ketchup-free, wrong-meat sandwich. I did not enjoy it. The coffee, however, was outstanding.

As I reached under my desk to throw the sandwich wrapper and empty coffee cup into my waste basket, I pulled a back muscle.

I’m starting to think that me and this day just aren’t going to get along.

Filed Under: life Tagged With: , , , ,
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Mister Fidget

October 12, 2010 By

George has been getting into everything lately.  And I mean everything.  He opens and closes doors, peers into the refrigerator, moves the lever on the dishwasher door back and forth, and sends the blender into a fruitless frenzy of activity. He gets into cupboards and removes things.  He finds stuff that can be poured, and he pours it.  He turns taps on and off. He has succeeded in deprogramming the remote several times. He finds things in squirt bottles and squirts them. He jabs the straw into those little cardboard juice boxes, and then gives an almighty squeeze to see the juice shooting up and hitting the ceiling. The light on the fish tank gets turned on and off so often that the poor fish have probably completely lost any circadian rhythm they had to begin with.

As much as George loves to fidget with things, turn things on and off, open and close things, pour things, he hates it when anyone else does anything. My attempts to cook dinner, for instance, are accompanied by this contant commentary.  Close the fridge. Microwave off. Close the dishwasher. Close the drawer. Close the cupboard. Leave the milk. Tap off. And on and on and on.  While all of this is going on, I’m tripping over a lanky seven-year-old who is darting around the kitchen trying to put things away, close things, and turn things off.

Running the kids’ bath last night was an adventure. James picked out two boats that he wanted to play with in the bath.  He put them in the tub, I started the water running.  I did what I usually do, which is to close the bathroom door and then go off to gather towels and pajamas while the water is running. When I went back into the bathroom a couple of minutes later, the water had been turned off, the tub was empty, and James’ boats were nowhere in sight. James, it must be said, was not at all pleased.

After a brief search, the boats were located in a toy box, and we tried again. This time, James stood guard at the closed bathroom door, like a miniature sentry. Gerard worked hard to distract George, who was repeatedly going, “Tap off! Tap off!” After what felt like seventeen hours but was in reality a couple of minutes, the bathtub was ready, and I turned the tap off.  George was instantly calm.

James was happy. He climbed into the tub and started playing happily with his boats, among the bubbles in the water.  George had kicked up such a fuss that I was not really expecting him to get in. But he ran off to get a few pieces of Lego, which he tossed into the water.  Then he calmly got in, sat down in the water, and played with his Lego.

When compared with a lot of the other stuff I have to deal with on a day-to-day basis, this behaviour is really not that bad. It’s just inconvenient and exhausting to deal with all the time.  There is, however, a giant silver lining to it: when George is engaging in this behaviour, he is a lot more verbal than usual. We are trying to look past the messes and spills, the fact that we have to keep replacing groceries that get poured out, and the general inconvenience of it all, to see the potential opportunities offered by the increased use of words.

Sometimes troublesome behaviour is a predecessor to a giant leap of progress. Even while I complain about the fact that it takes me twice as long as it should to get anything done, I recognize that this could mean exciting times for ourselves, and more importantly, for George.

Filed Under: parenting Tagged With: , , , , ,
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The adventure that began seven years ago

September 18, 2010 By

When I was a little girl, I didn’t play with dolls. Being a bit of a tomboy, I was much happier getting my knees scraped up and playing with potato guns with my brother and his friends (my poor mother would reach into the bag of potatoes while preparing dinner, only to pull out potatoes that we had used in our potato guns and then put back, full of holes, where we had found them).  I’m pretty sure my mother worried about me.  I had very little interest in typical little girl activities, and by all appearances, I was not dainty and girly, and I had the maternal instincts of a gnat. How would this rough-and-tumble kid grow up to have a functional spousal relationship, not to mention kids?

I didn’t do much to ease the concern of my parents when I was a teenager and later, a young adult.  Socially, I was a late bloomer, and when I did finally start dating, I was going out with entirely unsuitable people. I had my first honest-to-goodness, genuine relationship with a decent human being when I was well into my twenties.  I was with the man in question for two years before life simply took us in opposite directions.  That break-up came about a year after my brother came tumbling out of the closet, so my poor parents despaired of ever having grandchildren at that stage.  To be honest, I kind of gave up hope for myself as well.  I was thirty and alone, and about to move to a place where I knew no-one.

When I was finally expecting my first son at the ripe old age of 33, I started to worry for entirely different reasons.  I was convinced that I was going to be a crap mother.  I had no patience at all.  I had a quick temper.  I’d never really felt comfortable around children, and I wasn’t really sure that I’d know what to do with my own child. I knew a whole lot about being pregnant – what to eat, how to exercise, what all of the little aches and pains meant – but when it came down to it, I knew nothing about actual babies.

Seven years and one day ago, on September 17th 2003, I spent the day cleaning my house to within an inch of its life.  I didn’t know what had come over me: I am not exactly a poster child for domesticity. I was even cleaning windows, for the love of God.  My nine-month-pregnant self was tottering precariously on a chair making sure there were no cobwebs in the corners of the ceiling. That afternoon, I went to the grocery store and stocked up.  When I got home, I cleaned out the fridge and rearranged cupboards.  I think Gerard, the soon-to-be Dad, was a little frightened by my sudden flurry of activity.  I may have been just eleven days away from my due date, but wild horses couldn’t have stopped me.  I was a woman possessed.

Six hours later, when I felt as if I was being turned inside out by contractions, I realized that I had spent the day nesting.  I had read about this nesting phenomenon, but at the time I hadn’t really put two and two together.  It is debatable, of course, whether I was nesting because I was about to go into labour, or whether labour was induced by all of the nesting activity.

A few minutes before 11:00 the following morning, September 18th 2003, the pain was forgotten as a brand-new baby boy was placed gently in my arms. As I looked at my George, into those big eyes that looked so innocent and yet so wise, I was struck by the enormity of this life change. Five minutes previously, I had been just another woman – admittedly one going through an intensely painful experience without any drugs to kill the pain.  Now I was a mother.  I was responsible for an entire human being.  How he turned out, what kind of life he had, would depend to a great extent on my actions.  The weirdest sensation I had was that I was actually ready for it.  I was not afraid (although, to be honest, some pretty intense anxiety would hit two days later, when I was sent home and expected to actually keep this miniature human alive without the aid of nurses telling me what to do).

George the baby

Seven years on, my miniature human being has been transformed into a long, lanky beanpole of a kid whose pants keep getting too short for him. I still experience anxiety, but of a different kind, and I have just accepted that anxiety and worrying are just normal parts of parenthood.  I have faced many challenges, survived another childbirth (also without drugs – do I not learn from these things?).  I have discovered that contrary to what I used to think, I actually do have deep reserves of patience.  I have learned what true unconditional love means, and that those maternal instincts that many people thought were missing when I was a kid were lurking in there somewhere all along.

I have watched my baby grow into a wonderful little boy.  Things are sometimes really difficult for him, there are times when we cannot reach him in his autistic world.  But more and more, we are making connections with him.  We are seeing the spark of intelligence and the emergence of a wonderful quirky sense of humour. He is quick to smile and when he’s with the people he loves, he is generous with his hugs.

On September 18th, 2003, my life changed forever. Not only did I become a mother.  I became George’s mother, and that is something truly special.

Happy seventh birthday to my beautiful boy who has touched the world with his own special brand of magic.

George the boy

Filed Under: Children, parenting Tagged With: , ,
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Remembering Dad

August 13, 2010 By

On another Friday the Thirteenth 73 years ago, my Dad was born.  He shares his birthday with Fidel Castro (who he couldn’t stand) and Alfred Hitchcock (who he greatly admired). Dad’s birthday is always a bittersweet occasion for me. Bitter because I feel sadness that he is no longer with us. Sweet because even though he’s gone, his birthday is a reminder that his life should be celebrated.

I have tremendous admiration for both of my parents. Now that I’m a parent myself, I have an appreciation for what a tough job it is. In a way, my parents had more parenting challenges than I have, simply because they had no idea where their children were coming  from. My brother and I are both adopted, and adoptions were done very differently back then. There was no disclosure, no sharing of information, no opportunity for the birth mother to even meet, let alone choose, the adoptive parents. It was by pure chance, a cosmic roll of the dice, that I ended up with the parents I got.

Fate did well by me. If I had been able to choose my parents, I think I would have chosen the ones I got. I did not appreciate them enough when I was a kid (because what child ever does?) and I would not attempt to claim that my parents were perfect. I can say, however, that if I am a tenth as good a parent as either my Mom or my Dad, then my kids are very lucky. I am fortunate to still have Mom. She may live on the other side of the world to me, but she is still mentor, adviser, critic when she needs to be, friend, confidante, and above all, Mom.

As I think about my Dad, I see snippets of my life played back like a slideshow. Me and Dad at a father-and-daughter square dancing event when I was seven. Going for a ride in his vintage sports car. Watching the Olympics with him when we were both bunged up with colds. Our shared love of reading that generated trips to the library followed by a cup of juice, and as I got older, coffee. The tax returns he did for me each year because I couldn’t figure out how to do them myself.

I made stupid mistakes in my youth. That’s what young people do. Their brains are not wired for wise decisions, which is why they need parents. Dad, being older and infinitely wiser than me, would see the mistakes coming and warn me. Being young and impulsive, I would do something stupid anyway and find myself in the middle of a crisis. Dad would always be there to help me pick up the pieces of my life, and he was kind enough to never say that he’d told me so.

I will never forget the moment when Dad saw his newborn grandson for the first time. He and Mom were exhausted, fresh off the plane from South Africa. They had come from the airport straight to the hospital to see George, who was then just one day old. As I placed the baby into Mom’s arms and then Dad’s, it was like slotting the final piece into a jigsaw puzzle to complete the picture. Grandparenthood fulfilled something in both of them, though it is hard to define exactly what. My sadness at the fact that my boys are growing up without their Granddad is countered by the knowledge that my Dad, for all too brief a time, experienced the joy of being a grandparent.

Dad died almost six years ago, taken from us all too soon by cancer. I choose to believe that he is still around, that from some vantage point, he is watching his grandchildren grow up. I choose to believe that when I participate in races, Dad – who was one of the top marathoners of his day – is running right along with me. I hope he is proud of me, and happy with the job he did as a parent.

Rest in peace, Dad. I love and miss you.
~ Cyril James Jessiman ~
~ 13 August 1937 – 6 December 2004 ~

Filed Under: Bereavement, parenting Tagged With: , , ,
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The boy on the bus

July 6, 2010 By

Yesterday, while I was in the bus on the way home, a child started to cry. He couldn’t have been older than two, and he cried in that all-out, heart-felt, unrestrained way that only very young children can achieve. It was a scorching hot day and the bus was crowded: the child was stressed and exhausted and there were no seats available for him or his mother. To add insult to injury, the child’s shoe came off and rolled behind a couple of other passengers. This can be a big deal for a small child who’s already having a hard day.  Because the bus was jam-packed, well-meaning passengers were not able to bend over to pick the shoe up, so it had to stay where it was until the crowd had cleared a little.

The crying was relentless, and painful to listen to.  The child’s mother was trying to calm him down while at the same trying to take care of the other child she had with her.  She was clearly overwrought; I had a moment of direct eye contact with her, and she had pure desperation written all over her.  Not surprisingly, people were staring, drawn as they are to focus on loud noises around them. Some were understanding, some were visibly annoyed. One man offered the mother and child his seat: she politely declined, saying that she wanted to remain near the front of the bus, no doubt to make a quick escape without having to fight through crowds.

After a while, the lost shoe was returned to its rightful owner, and the child’s mother succeeded in calming the crying somewhat.  Instead of out-and-out howls of outrage, there were quiet snuffles with the occasional bout of loud crying. Eventually, the mother got off the bus with her two children, but not without being rudely pushed out of the way by a man whose life must have depended on him exiting first.

As soon as the bus doors closed, the woman sitting beside me, who you could tell just by looking at her had issues, loudly proclaimed, “Well! That child needs a good hiding!”

Maybe it was the not-so-subtle waves of disapproval and judgmentalness radiating from her.  Or maybe I was just in one of those perverse bloody-minded moods I get into from time to time. Or maybe I’ve simply become one of those moms who cannot shut up when her view of how the world should be is violated. Whatever the case, I couldn’t just let that remark go.

“Why spank a sweet child like that?” I asked innocently.

The woman looked at me incredulously, and scrunched her face up into a sour expression, earning her the title in my mind of Lemon-Face. She said, “He is so badly behaved.  I cannot believe any mother would let her child get away with that.”

By now, she had the attention of every single passenger on the bus. It was blatantly obvious to everyone, except her, that the child had not been misbehaving.  He had just been very upset and unable to cope with it. None of the other passengers, however, wanted to participate in the dialogue, and I found them all looking expectantly at me.

I stated the obvious, which was that she should give this kid a break, he was no more than two, and then went on to say, “Besides, you don’t even know the circumstances. Maybe he was just at the doctor and had his shots. Maybe he’s not feeling well.  Maybe he fell on the playground and hurt himself.” I paused a beat, and said what was really on my mind: “Maybe he has a disability like autism and is reacting to sensory overload.”

Lemon-Face was nonplussed.  Clearly the type who routinely expresses prejudicial opinions without being challenged on them. Not to be outdone, she said, “Autism is just a fancy way of saying a child is undisciplined and out of control.”

Uh oh.

I had to explain, of course.  I had to tell Lemon-Face how flourescent lights can feel like fire burning directly onto an autistic child’s retina, how the hum of normal conversation can be like shouting, how a gentle touch can, at the wrong moment, feel like nails piercing the skin.  I had to describe my own son’s absolute fear of Wal-Mart check-out lines, triggered by some combination of senses that I cannot understand.

I had to explain how offensive it is to hear strangers remark that my son needs a good hiding – remarks that are always accompanied by the clear but unspoken implication that my child is that way because I’m a bad parent.  These strangers don’t understand what it’s like to be my son, or to be the parent trying to help him make sense of a situation that is scaring him.

I had to make it absolutely clear that spankings are not for everyone – least of all for children with autism who are having a hard enough time as it is coping with whatever sensory overload is getting to them at any given moment.  And yes, I explained that I am in tune enough with my son that I know when he is having autistic meltdowns that he cannot control, and when he is simply being a brat.  Yes, I discipline him if the situation calls for it, but no, that discipline does not involve spanking.

I don’t usually launch into impromptu autism education sessions while using public transit. On the contrary, my commutes to and from work are my “me time”, the only time I can really switch off from everything and just read a book (sad, I know, but we take what we can get). On this one occasion, though, I felt that I had to stand up for autistic children and their parents.  If that woman left the bus with a smidgeon more awareness and understanding, then I believe I did my small part to make the world a better place.

Filed Under: autism, Children, parenting Tagged With: , , , ,
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Things that go snip-snip in the night

May 31, 2010 By

I felt very weird last night, sneaking around my in my own house in the dark, hiding not one, but two pairs of scissors behind my back. I was dressed like a burglar: black shirt, black pants – both tight-fitting to avoid the tell-tale sound of rustling clothing.  In the interests of being as quiet as possible, I was in my stockinged feet.  I could not risk turning the lights on: I had to rely solely on the moonlight coming in through the open window.  I would have worn a balaclava, but since all I was doing was cutting my son’s hair, that probably would have been overkill.

Like most children with autism, George has sensory issues.  He cannot tolerate wearing shirts with collars. He will not eat something if he doesn’t know how it will feel in his mouth.  He stims by running around manically and jumping, jumping, jumping, to send as much deep pressure as possible through his body.  When he’s upset he tries to calm himself by banging his head (not something we allow, for obvious reasons).  He wore pull-ups for about a year after he was toilet-trained because he liked the way they felt.

And he wears a hat.  I suspect that the hat serves a dual purpose.  It creates a slight feeling of pressure around his head that gives him a sense of security, and it discourages people from touching his head.  Now, George doesn’t mind being touched.  He enjoys exchanging hugs with people he trusts, and he seeks the kind of games where you chase him, wrestle him to the floor, and tickle him.  He is always asking me or his Dad to scratch his back.  But he hates having his head touched.  His reaction to being touched on the head ranges from quiet but unmistakable discomfort (for light fleeting pats on the head) to out-and-out screaming, kicking panic (for hair-washing and haircuts).

I have a confession to make: I don’t brush my son’s hair.  I have so many other battles to contend with where his hair is concerned, and frankly, I don’t want him to start every day on such a negative note.  I know that the day will come when I will have to revise this policy, but for now my focus has to be on helping him overcome this issue he has. I cannot just go in with hairbrush a-blazin’ and expect him to be OK with it.  Fortunately, his hair has lost much of its toddlerhood curl and tendency to tangle, so he can get away with it not being brushed.  Besides, the ever-present hat tends to flatten the hair into submission.

However, George’s hair is still somewhat unruly.  The unruliness combined with the fact that I cannot give him proper deep, scalp-massaging hair-washes (hairwashing – a regular event that is fraught with trauma for the entire family) means that George’s hair has to be cut fairly frequently.  But since the sight of scissors coming anywhere near his head would send him into a state that he wouldn’t recover from for weeks, I have to cut his hair at night, when he is asleep.

Hence the dramatic sneaking-around-with-scissors behaviour.  When George goes to bed, I have to wait until he is in a deep sleep.  I have to make myself as invisible as possible, so he doesn’t hear, see or feel my presence.  I sneak silently up to his bed and reassure myself that yes, he is asleep, and that no, he probably won’t wake up anytime soon.  I swoop in – silently, of course – and cut whichever bits of hair I have easy access to.  Between cuts, the scissors are hidden.  I cannot take a chance on George waking up and seeing me there with scissors.  It sometimes takes up to a week to complete a haircut, because what I can do is completely dependant on how George is lying.  So the poor kid invariably spends a few days with his hair looking a bit patchy.

If the haircutting for the night has gone well, I don’t stop there.  I put down the haircutting scissors and pick up the second pair of scissors that I have brought along for the excursion.  I pick up one of George’s hands and experimentally run my finger along his nails.  If he stirs, I leave well enough alone – it is a sign that his sleep is not deep enough for me to proceed.  If he doesn’t react, I pick the longest nails and cut them – another task that George will not tolerate during his waking hours (I suspect that this stems from a babyhood incident in which I accidentally nicked one of his fingers).  Like the haircutting, it can take several days to cut George’s full set of fingernails.  Fortunately, I never have to bother with the toenails – George has the same brittle toenails that I do; they break off during regular day-to-day activity.

Someday all of George’s personal grooming tasks will be done during daylight hours, without any subterfuge on my part.  Getting there will take time, though.  It will require gentle desensitization, social stories, a regimen of reinforcements and rewards.  And lots of patience.

And love.  Never forget the love.

Filed Under: autism, parenting Tagged With: , , , ,
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Moments of connection

April 14, 2010 By

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.

Filed Under: autism, parenting Tagged With: , , , , , , ,
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Never forget the siblings

March 29, 2010 By

As I work towards my Run for Autism, my inspiration is George.  He’s the only member of my family – either immediate or extended – who has been touched by autism.  I could go on all day about his challenges, his strengths, and the fact that what most “typical” parents see as minor developmental milestones are, to me, gigantic accomplishments that make me want to jump for joy.  I am in the process of starting to work with a holistic lifestyle coach named Brandon: the first time I spoke to him he told me that while parenting in general is equivalent to a full-time job, parenting a child with autism is equivalent to an additional full-time job.  It makes sense.  I have to maintain two completely separate styles of parenting for my two children, because what works for one definitely would not be appropriate for the other.

And in this sense my Run for Autism is inspired not only by my autistic son George, but also by my neurotypical child James.  James, in addition to just being James, a unique individual in his own right, is also the brother of an autistic child.  Although he is chronologically the younger of the two, in most senses he is actually older.  He has the verbal skills, the social skills, the adaptive skills that his brother does not have.  There are times when he is called upon to understand the kinds of things that kids his age shouldn’t have to worry about.  He has a very strong sense of what is and is not fair, and when George’s autism leads to us reacting in a way that James perceives to be unfair, it can be very hard for his four-year-old mind to process.  Being the sibling of an autistic child cannot be easy.  And so when we do something to improve the lives of autistic children, we are also by extension doing something to improve the lives of their siblings.

We are very fortunate that James is the kind of child that he is.  He is a highly verbal, very social child.  He has opinions and he’s not afraid to express them.  Although there is definite sibling rivalry, James adores his big brother.  If he is given a cookie, he requests one for George.  If we do something simple like take George’s hat off his head in a playful moment, James will get upset and demand that we return the hat to its rightful owner.  When George is having a meltdown, James feels sad and says things about how he will take care of George.  He has never used the word “autism” in relation to George, but he is aware of George’s disability. Based on his character, both Gerard and I believe that James will grow up to be friend and advocate to his brother.

I frequently worry about whether I am doing right by James.  So much of James’ life is shaped by George’s autism.  A simple example is Mr. Potato Head.  George loves Mr. Potato Head.  He has about twenty of them, and he has to know where they all are at all times.  If anyone touches his Mr. Potato Heads he gets very upset.  Any Mr. Potato Head that enters the house is automatically deemed to be George’s property.  There have been times when James has tried to play with a Potato Head, and he’s been prevented from doing so, either by George himself or by parents who are too frazzled to deal with a meltdown.  Over time, James has been conditioned to not play with Mr. Potato Head.  I have no idea whether he’d like it or not, and I feel oddly sad that we’ll never find out.  Another one like that is Lego.  We tried getting James Lego that is different in appearance from what George likes, but we have had limited success.  James will still make the occasional attempt to play with Lego, and if I happen to be around, I play with him and fend off George’s intrusions.

I sometimes wonder whether James’ passion for trains and cars is genuine, or if it’s just something he has gravitated to because George isn’t really interested in them.  When these thoughts start troubling me too deeply, I console myself with the knowledge that James truly does love his cars and trains and gets a lot of joy from them.

What I really want to convey is this: autism does not only affect the individual diagnosed with it.  It touches every member of the family.  The autistic child is not the only one who needs special care and attention.  We must never forget the siblings.

Filed Under: autism, family, parenting, Siblings Tagged With: , , , , , , , , ,
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Who am I and what am I doing here?

March 17, 2010 By

I sometimes tell people that I am a normal mom – overworked, overextended, overscheduled, and overwhelmed.  But in my household, we use the word “normal” very loosely if at all.  For a start, I’ve never really believed in the concept of “normal”.  It’s too subjective – one person’s “normal” is another person’s “what the hell is going on here?!?”  And the fact that one of our children has special needs throws a wrench into the whole idea of normality anyway.

To start from the beginning: I am a transplanted South African living in Toronto, Ontario.  I proudly became a Canadian citizen three months ago, on the same day – indeed the same ceremony – on which my partner of eight years proposed to me.  Gerard and I have two children together.  George is six years old, and if I were asked to describe him in one word, that word would be “sweet”.  He may be autistic, but he is such a sweet, gentle soul.  He is touched with a kind of grace that is impossible to put into words.  His mind goes to places that are unreachable to the rest of us – these places are sometimes frustrating, both him and to his family – but at times he is so present, so with us.  He does not talk much and has a lot of trouble with social engagement, but he is a smart kid who can read (although not necessarily comprehend), count, add, and write his own name.  He is full of love.  He is never short of a hug for his family, and has a healthy level of sibling rivalry with his younger brother James.

To describe James, I would use the word “dynamite”.  James is four, and depending on your own personal views, his Christmas Day birthday can be seen as either a blessing or a curse.  We ensure that he gets his full quota of attention by throwing half-birthday parties for him in the middle of the year.  James is loaded with energy.  You know those cartoons in which a series of streaking white lines depicts a character running by so fast that you cannot see him?  That’s James.  The kid never stops.  He approaches life in the same way a bull approaches a china shop – as several visits to the Emergency Room over the last four years will testify.  He is always busy, always talking a mile a minute.  He gets into spats with George, but he is also a wonderful little brother.  He is considerate of George’s challenges – not because he has to be, but because he wants to be.

I am lucky to have Gerard.  He is a truly wonderful father to the boys.   We have been through some very hard times – so hard that at one point, we didn’t know if we would make it.  But we have gone through the fire and survived – and we now know that there is nothing we cannot work through.  We are planning next year’s wedding with lots of excitement and anticipation.  Although getting married isn’t going to change anything in practical terms, it will be symbolic of a new and wonderful stage in our life together.

My passion – apart from my family, that is – is running.  I used to run years ago, but having kids put a kaibosh on that for many years.  For ages, I tried to get back into it, but there was always a reason why I couldn’t.  Then, about a year ago, the right motivation came in the form of an email.  The Geneva Centre for Autism was entering a team in a major Toronto running event.  Parents were invited to register for the race and raise pledges.  All funds raised would go towards providing services for autistic children and adults – people like my son George.

Wow.  An opportunity to do something for my son.  As soon as I saw this email, I knew that I had finally found the reason that I would not give up.  Although I could barely run around the block at the time, I signed up there and then for the half-marathon, six months away.  For the next six months, I trained and rediscovered my love of the sport.  And on September 27, 2009, I stood at the finish line with a finisher’s medal around my neck and a village-idiot grin on my face.  My legs were screaming, but every other part of me was on an incredible emotional high.  I had done it.  I had run this race for my child.  And I knew I was going to be back.

The Geneva Centre is entering a team for the 2010 event, and I have already signed up for the half-marathon.  I am just emerging from three months of illness and injury, but my training is already getting back on track.  I have a busy racing season ahead of me, starting with a 10km event on April 3rd.  All of the training, all of the races that I participate in over the summer, will lead up to this one event – my run for autism on September 26th.

Follow me as I go through the trials and tribulations of training, the early morning solitary runs in the dark, the long Sunday runs with the sun beating down on my shoulders.  Moan and groan with me as I massage my aching muscles, and stand with me at the finish line as we celebrate a triumph for autism on the day of the race.

Filed Under: autism, family, fundraising, parenting, running, Siblings Tagged With: , , , , , , ,
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