post

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: , ,
post

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: , , ,
post

The boys and the bees

July 29, 2010 By

When I got home from work on Tuesday, my younger son James greeted me at the front door with a blue face. It wasn’t that he had used his face as a Magic Marker canvas.  It wasn’t that he’d eaten a cupcake with blue icing, resulting in blue smudges around the mouth.  It was that he’d been on a field trip to the park and had his face painted as Blue, of Blues Clues fame.  It looked really cute, but it can be disconcerting to get home and find your second-born looking like a goofy psychadelic blue dog.

About half an hour later, James got tired of having a blue face, and he asked me to wipe it clean for him. I checked on George, who was running around in the back yard, and then, armed with a wet cloth and a four-year-old, I sat on the couch. I’d gotten about halfway through the clean-up job – meaning that James now looked even weirder than he had to begin with – when I heard a shrill scream coming from outside.

Seconds later, George came tearing into the house and launched himself onto the couch, still screaming.  I was suitably alarmed.  My husband flew out into the back yard to make sure there were no psychopaths lurking there, and I started checking my son for blood and broken bones.  Initially I didn’t see anything wrong, and the only indication of a problem was George’s ear-splitting screaming and frantic hand-flapping.  I tried to ask him what was wrong, but I didn’t really expect an answer out of him. Child with autism, limited verbal skills at the best of times, and in an absolute state – talking was not going to happen.

Suddenly he started scratching his legs frantically, almost manically. He scratched so hard that he actually drew blood.  That’s when I saw the bee stings – two of them, one on each leg. His first bee stings – no wonder the poor child was so upset.  I’ve tried to teach him basic safety, of course, but I’ve focused on things that posed an immediate threat. Crossing the road without looking. Touching a hot stove. Stranger danger. Internet safety. Somehow, the subject of bee stings has never really been a priority.  And so, in his understanding, he was playing outside and suddenly experienced unexplained pain in both legs. Add to that the physical hypersensitivity that is part and parcel of his autism, and we have a picture that is not at all pretty.

I did the same thing I always do when George is freaked out about something.  I opened my arms and wrapped George in the biggest hug I could. My heart twists when either of my kids is in pain, and sometimes a hug is the only thing that will help them. In the case of George, the deep pressure of a hug is physically soothing.  It makes him feel grounded and secure; it helps the panic abate.

Little by little, the screams got softer and then petered out. The crying was gradually replaced with quietness punctuated by an occasional sniffle. George was still trying to scratch his legs, so I didn’t release my hold on him.  A bottle of anti-itch lotion appeared from somewhere. I applied it, which involved a whole new struggle. In the meantime, James, who had initially been a bit put out by the abrupt shift in attention, declared that he was the doctor and he would take care of George. He’s very sweet that way, James is. When George is upset, James always wants an active part in caring for his brother.

Later in the evening, when relative calm had returned to the household, I was moving around the kitchen in a bit of a trance, preparing dinner and lunches for the following day.  I was startled out of my reverie by a loud clatter-bang-bash-shriek coming from the direction of the stairs.  Initially I thought one of the kids had accidentally dropped something down the stairs.  It wouldn’t be the first time: on many occasions, we have discovered that Lego or Thomas the Train characters make a very loud noise when dropped down a set of hardwood stairs.  This time, however, the howls of outrage were my first clue that something was wrong.

It was James. He had tried to bring down the stairs, in one go, Lightning McQueen, Doc Hudson, Mack, Sally, Mater, the Sheriff, Fillmore, and the Dinoco helicopter (anyone with a son under the age of ten will know who these are and what James’ current obsession is).  Because he was carrying so much stuff, he was not able to hold the handrail, and because he was wearing socks, he slipped on the hardwood.

At the end of the day, both of my boys were fine.  George wasn’t allergic to bees and James didn’t have any broken bones.  The only real casualties – apart from the bees that died while stinging George – were my nerves and my blood pressure.

Filed Under: Accident, Children, parenting, Siblings Tagged With: , , ,
post

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: , , , ,
post

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: , , , ,
post

A whole new world of hope

April 19, 2010 By

On Saturday morning I woke up full of anticipation.  Gerard, George and I were headed to York University to get the results of George’s latest assessment.  It had been a year since the previous assessment, and the results of that had left us feeling bereft and overwhelmed.  We did not need this latest assessment to tell us that George has made progress: we have seen that unfold right in front of us.  Every single new word and every moment of connection, however fleeting, has been a cause for celebration.  However, it is always nice to have these things acknowledged as part of a formal assessment, to receive confirmation that the progress we see is not just the imaginings of hopeful parents.

The psychologist who led the assessment started by talking about adaptive skills – play skills, social communication, daily living skills such as tidying up at the end of the day, going shopping, and knowing to look before crossing the road.  In this area, George has made very little progress over the last year.  He has not actually lost skills, but compared to typical children of his age, he is relatively further behind than he was a year ago.  We discussed possible reasons for this lack of progress: Gerard and I are often so exhausted and worn out by the demands of day-to-day life that sometimes we just take the path of least resistance.  On hard days it is easier to tidy up ourselves instead of going through the whole time-consuming and exhausting process of prompts and reinforcements that would be necessary to get George to do it.  But recognizing that short-term pain so often leads to long-term gain, we have to change our strategy.

As it turned out, that was the only bad-news part of the whole assessment.  We spoke about verbal skills: George’s vocabulary and use of language, whether he can read and spell, how much he understand what is said to him, his ability to follow instructions with and without additional prompting.  A year ago, George had the verbal skills of an eleven-month-old.  Now, he has the verbal skills of a 30-month-old.  He is still well behind where typical six-year-olds are, but the gains over the last year are huge.  He has made nineteen months’ worth of progress in just a year.  So while there is still a sizeable gap, the gap has narrowed.

When we started talking about non-verbal skills, the news got even better.  Non-verbal skills include things like cognitive skills, problem-solving, understanding of what numbers are for, the ability to see patterns and solve puzzles, and all that kind of good stuff.  George has, to put it simply, made a gigantic leap in this area over the last year.  A year ago, he was functioning at about a twenty-month-old level.  And now – I get goosebumps just thinking about it – he is functioning at a 51-month-old level.  That, my friends, is a gain of 31 months – more than two and a half years – over the space of just one year.  Yes, his overall functioning in this area is still about two years below where it should be.  But a year ago, it was about three and a half years behind.  Again, a narrowing of the gap.

Overall, George has moved down on the autism spectrum.  While he is clearly still on the spectrum and has a long way to go, his autism is not as severe as it was.  The therapy that he has been going to has been making an enormous difference, and with continued therapy and intervention, George can move that much closer to where he should be for his age.

I don’t have a crystal ball.  I cannot say for certain what George’s future holds.  Maybe he will never be much of a talker.  Maybe he will never be able to live completely independently.  Or maybe he will – who am I to say something like that cannot ever happen?  But there is no doubt in my mind that he is loaded with potential, and that he will be great at whatever line of work he ultimately chooses as an adult.

Whatever the future holds for George, he is my boy and I am so proud of him that I could just weep.  It is an honour to be Mom to such an amazing little boy.

Filed Under: autism, Medical, parenting Tagged With: , , , , , , , ,
post

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: , , , , , , ,
post

Autism funding – not a game for the faint-hearted

April 12, 2010 By

When George was first diagnosed with autism, I remember being overwhelmed by many things.  The overload of information, the attempts to separate the good information from the inaccurate yet guilt-inducing nonsense, the diagnosis itself, the fact that in an instant, all of my preconceptions of what my family’s life would be like were shattered, the confusing labyrinth of autism funding.

Somehow I navigated my way through the confusion and the funding.  It’s so easy to say that in one sentence, but the acquisition of funding was a long and painful process, one that was so complex that thinking about it made my head hurt.  Trying to figure out how the funding worked was like trying to memorize pi to 59 decimal places while simultaneously doing long division in my head.  In the end, once I had been told that I qualified to apply for funding (see?  You have to qualify just to apply), I took the application forms and all of my information to the good folks at Respite Services.  The Respite Services guy, with endless patience, helped me fill out the forms.  He wrote down lists of what supporting documentation I would need to send with which forms, where to send them to, in what sequence to send them, and what I would be able to actually use the funding for.  If it hadn’t been for the Respite Services guy, I would still be wandering around in the metaphorical maze looking like a lost fart.

If I’m to be completely honest, I still don’t really have my head wrapped around the funding.  Some of the funding is used for things like educational materials, specialized equipment or support aids, parking costs for medical appointments, anything that I have to actually purchase as a result of George’s autism.  Other funding is used to pay respite workers to come to my house and work with George.  Some funding is deposited into my account on predetermined days, other funding is reimbursed when I submit invoices.  I couldn’t tell you, though, which agency provides what funding or what all the acronyms stand for.

Anyway, I recognize that I am extremely lucky to have any funding at all.  Once our funding was first approved a couple of years ago, we hired a respite worker.  George had actually known her for some time – she used to work at his daycare and kind of transitioned into babysitting for us occasionally.  When the funding came through, she agreed to come to our place every Sunday morning to work with George.  She would play with him, give him some lunch, talk to him – all geared in a way to develop his speech and social skills.

This arrangement worked very well for a couple of years, during which this wonderful lady became a friend to our family as well as a respite worker.  Sadly, she became ill a few months ago and had to step back from respite work in order to focus on her health.  It was a blow to our family, but we completely understood.  We still keep in touch with her, and she has visited us a couple of times to say hello and see the boys.

We did have to get a new respite worker, though.  I had never actively recruited for one – our previous worker kind of came to us through circumstance.  So when the need arose, I called up my friends at Respite Services and told them I needed a worker.  They asked me a bunch of questions.  On what days would I need a worker?  What goals would they be helping George to achieve?  How energetic was George and what kind of things did he like?  Was he allergic to any foods?  Did we care whether the worker was a man or a woman, what age they were, or whether they spoke with an accent?  Some obvious questions, some fairly obscure ones.  In the end, we came up with a profile, and the Respite Services people sent out a notification to the workers they had on file.

Two weeks later, I got sent an email with four matches.  I read through the resumes, and immediately eliminated one because the worker had indicated a preference for working with adults over children.  I contacted the other three and last week, I met Catherine.  You know when you like someone instantly, the moment you first meet them?  That was Catherine.  She was cheerful and outgoing, and both of the boys liked her on sight – and they are pretty good judges of character.  We spoke with her at length, and agreed on regular days and times for her to work with George.  And she will be starting with us on Wednesday, when George gets home from the therapy centre.

We are looking forward to this new chapter in George’s life.  We are looking forward to seeing him interact with a new person, and we are excited about seeing the ideas that Catherine might come to the table with.

The jury will be out for a while, until we as a family have gotten to know Catherine better (and she us – we may be really groovy people, but she could turn out to not like us!), but we are hopeful.  And in the life of an autism family, hope is essential.

Filed Under: autism, parenting Tagged With: , , , , , ,
post

World Autism Awareness Day

April 2, 2010 By

Today is World Autism Awareness Day.  This is the day to reflect on people of all ages who are touched by autism.  Wherever they happen to be on the spectrum – whether they are verbal or not, high- or low-functioning – they are important members of society.  They deserve love, respect, admiration for all they have to live with and overcome, and opportunities.  Autism manifests in countless ways.  There are probably as many forms of autism as there are autistic people.  Some auties talk, some don’t.  Some have enough capacity for academic learning to complete high school and go to university, some don’t.  There are auties who are brilliant artists, some who are mathematical whiz-kids, photographers, musicians.  Some become famous.  Some don’t become famous, but manage nevertheless to carve niches for themselves in the communities in which they live.

We had a very good World Autism Awareness Day.  It started with George requesting and wearing a pair of shorts instead of the long pants I had selected for him.  Traditionally, George has a hard time with the transition of seasons.  If he’s used to wearing winter clothing, he doesn’t want summer clothing.  If he is used to shorts and T-shirts, he will not wear winter clothing until he has experienced the freezing cold weather for himself.  So the fact that he transitioned so seamlessly into summer clothing is a big deal indeed.

Once we were all dressed and ready for the day, me, my mother-in-law, and my friend Fran sat at the kitchen table chatting and having a lazy morning.  James was playing with his cars, George was wandering around the room, not really doing anything.  Gradually, we became aware that he was counting while he was wandering.  So far, not really a big deal.  For a long time, George has been rote counting, and even doing mathematical sums, but it’s never really been applied to the real world.  This morning, however, we realized that there was a purpose to his counting.  He was counting how many chairs were in the room, how many tables, how many cups were on the table.  Instead of rote counting, he was counting groups of objects.  He was using the concept of counting for something real.

While I was still celebrating this very meaningful accomplishment, George paused his constant activity to tug at my sleeve.  “Let’s sing O Canada”, he said.  And he started singing our national anthem.  Admittedly, he wasn’t word-perfect, but he did really well for a six-year-old, especially one with autism and limited verbal skills.  He sang sweetly, with lots of heart.  He made me proud to be Canadian, and proud to be his Mom.

Later in the day, we went to the park.  I sat on a bench watching my boys running and playing, I pushed them on a swing and showed James how to go down the fireman’s pole.  I laughed as James grabbed a handful of leaves and dumped them over George’s head, and I smiled when they insisted on holding hands with each other for the walk home.  It was a perfect brotherly moment for the two boys.

And so I wrap up a wonderful day, and I prepare for tomorrow’s 10km race.  I am eagerly looking forward to the race.  It will be a significant and exciting step in my quest to run for autism.

Filed Under: autism, parenting, Siblings Tagged With: , , , , , , , ,
post

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: , , , , , , , , ,
« Previous Page
Next Page »