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

The wheels on the bus go round and round – or do they?

September 15, 2010 By

My younger son James, who is all of four years old, walks to school because he does not qualify for bussing.  I drop him off at the daycare on my way to work, and one of the daycare staff walks him and a few other kids to the school where they attend Kindergarten, just a couple of blocks away. When they are done with school, they are picked up and walked back to the daycare.  It is an arrangement that works very well.

The fact that James walks to school is a godsend. It means that I only have to deal with the annual frustration of getting the bussing right for one child instead of two.

Ever since George entered the school system three years ago (cripes, has it really been that long?) there has been one issue or another with the bus arrangements.  Don’t get me wrong, I know what a scheduling nightmare it can be.  I am the first to appreciate the chaos that must reign in the bus companies in September of every year. I can imagine how tough it is for the drivers to deal with last-minute route changes and impossibly tight schedules.

But how far is my tolerance supposed to go? Where does one cross the line from being patient and understanding to wanting heads to roll because your child is being shuffled around by the system?

Our bus requirements are a little bit different to those of most families by virtue of the fact that George is picked up from one place before school and dropped off at a different place after school.  Gerard takes him to the therapy centre in the mornings.  A school bus picks him up at lunchtime to take him to school.  Another school bus picks him up from school at the end of the day to bring him home.  The issue is not with the pick-up and drop-off locations, it is a simple matter of timing.

Months ago, before we’d started making bussing arrangements for the new school year, the therapy centre made it clear to us that George’s pick-up time from there had to be no later than 11:45. When the morning kids are dismissed from the therapy centre each day, the afternoon kids come in. The therapy centre does not have the staff to be dealing with both the incoming afternoon kids and the morning kids whose busses haven’t shown up. Like many special ed programs, the therapy centre has a problem with staffing.  They don’t have teachers and therapists wandering the halls with nothing to do.

When I filled in the bus request form, I wrote the requirements on it as clear as day.  In big bold letters, emphasized with yellow highlighter, I wrote that pickup was to be no later than 11:45.  I gave the form the George’s teacher, everyone went away for their summer vacations, and that was the end of it.

Until George’s new bus driver called to tell us he would be picked up each day at 12:05.  Initially we weren’t too bothered by this, and neither was the therapy centre.  September, we thought.  New schedules, the need to transport kids to and from all kinds of places at all kinds of times, logistical nightmare. We notified the bus company that the pick-up time was a problem.  The bus company said it would be fixed within a week.

In the interim, Gerard would have to close down his shop each day to drive to the therapy centre, drop George off at school, and return to work.  Taking an hour out of his day that he really cannot afford right now.  After a few days of this, Gerard called up the bus company to ask them how things were moving along, and he was astonished by the stone wall of resistance that he met.

Not only had the problem not been sorted out, no-one was even trying. No-one wanted to try.  The general message Gerard got, in talking to one person after another, ad nauseum, was that the schedule was what it was and that nothing short of an act of God would change it.  Meanwhile, our son, who has autism and therefore a built-in resistance to changes in routine, is expected to sit idle for anywhere from twenty minutes to half an hour, not knowing what he is expected to do next or who’s coming to get him.

Gerard is nothing is not persistent, so he started phoning his way up the chain within both the bus company and  the school board.  He has been met with a variety of reactions ranging from indifference to arrogance to downright hostility.  At no point has he been anything other than polite and professional, and yet the responses have been baffling.

Through all of Gerard’s discussions and conversations with a number of people (he lost count somewhere after seventeen), a disturbing trend has emerged.  The bus scheduling difficulties had, for the most part, been resolved for the general schoolgoing population by the end of the first week of school.  By stark contrast, the vast majority of special needs kids still don’t have their transportation sorted out.  At the therapy centre that George attends, there are ten children needing transportation between the centre and school.  Of these, two children have correct bussing arrangements in place.  Which means there are eight autistic kids who are still confused about their schedules and anxious because they don’t know what’s coming next or when.  Although I don’t have any statistics, I hear similar stories from other therapy centres.

This whole situation is wrong on so many levels.  For a start, there’s the fact that this should not be a big deal.  We should not be getting this kind of resistance to a simple request that was made correctly in the first place.  But far more importantly, the special needs kids in our society are the ones who experience displacement, anxiety, and confusion. Why are there elements in our society that treat them as an afterthought?

As of this point in time, the problem has still not been resolved.  However, the supervisor (Of the bus company?  The school board?) has admitted that the situation is unacceptable and that it will be sorted out.

On a side note, I am fascinated by the reactions I’ve received from friends and acquaintances I have spoken about this to. One guy told me that all bussing should be done away with because there’s no real need for it.  He started on the age-old story about how, as a kid, he had to walk five miles to school in the snow and five miles back.  Yeah, right.  I’m going to let my son with autism walk to and from school by himself.  Then there was a lady who insisted that this is something I should just “suck up and deal with”, that as a parent it is my responsibility to get George to and from school.  This is not strictly true: it is my parental responsibility to ensure that safe transportation arrangements are made for my child.  As long as those arrangements are in place, the responsibility falls to whoever the arrangements are made with – in this case, the bus company.  It is also my parental responsibility to go to work each day and earn a living so I can feed, clothe, and shelter my children.

Things are not the same now as they were twenty or thirty or fifty years ago.  Back then, parents were fine with their kids walking to school.  There was less high-speed traffic on the roads, there were fewer pedophiles about, and parents could send their kids out of the front door in the mornings with the reasonable expectation that they would see them again at the end of the day.

In the case of younger or special needs children, if there wasn’t a bus available, Mom would be available to walk her offspring to school.  Back then, Moms tended to stay home more and the Dads were the breadwinners.  In most modern-day partnerships, both spouses have to work full-time out of economic necessity.

The argument that “what worked when I was a kid will work now” just doesn’t hold water.

Filed Under: Children, School Tagged With: , ,
post

Turn, turn, turn

September 9, 2010 By

To everything there is, apparently, a season.  There is a time for the sweltering heat of summer to give way to cooler temperatures and later sunrises.  There is a time for the light traffic associated with school vacations to be replaced by the usual mind-numbing gridlock.  There is a time for yellow school buses to reappear, for kids to start new grades and new schools, for parents to high-five each other over the fact that their household has survived an entire summer at the hands of little hooligans.

For families living with autism, there is a time to anxiously ride out the tough times that invariably come with a change in routine.

And for runners approaching their major race of the season, there is a time to kick up the training for the long runs, and there is a time to taper and rest.

There have been a lot of changes happening in my family, many of them typical back-to-school kind of stuff.  For James, our youngest, the changes have been minimal.  He has just started Senior Kindergarten, although I must admit that I have a hard time thinking about a four-year-old as a senior anything.  He is in the same classroom at the same school as last year, he has the same teacher and many of the same classmates.  I can only hope that this year will involve less upheaval and trauma then last year, when the much-loved teacher of James’ class suddenly died.

James himself is taking the new school year in his stride.  In fact, he was somewhat irritated when the previous school year ended.  From the day school let out for the summer, James wanted to go back. For the last two weeks of the school holiday, I had to do a daily countdown thing on the calendar to maintain my sanity and also James’.  Now that school has resumed, he’s as happy as a rat with a gold tooth. Will he be like this five years from now? Time will tell.

Change is also afoot for George. Last week he completed his formal one-on-one IBI therapy. On his last day we attended a graduation ceremony held in honour of George and one other little boy who was completing the program with him.  The two graduates stood there proudly holding their certificates (laminated, to prevent ripping) and wearing their little graduation caps.  I looked at my son thinking of how far he had come during his two years in the IBI program. Gone was the completely non-verbal, isolated, uncertain little boy who started the therapy.  In his place was a smiling, happy child, still not exactly talkative but at least talking to some extent. He savoured the attention being lavished on him, and rightly so.

This week George started a new phase in his life.  We are fortunate that although his routine has changed substantially, the new routine at least involves the same places that he is used to, and some of the same people.  In the mornings, he is going to the same therapy centre where he did the IBI, and he is attending a “school stream” program (a simulated classroom environment where there is a teacher as well as a one-on-one support person for each of the five kids). In the afternoons he is bussed to school, where he is in a special ed class.  Over the next two years he will be gradually mainstreamed, the general idea being that by the time he is in fourth grade, he will be fully mainstreamed in a regular class, but with special support.

So far, the change in routine has not caused that much disruption. George seems to be enjoying school stream and school.  He likes the school bus, and as mentioned, both school and the therapy centre are places that he already knows.  So we may get lucky with this one – we may escape the usual transition angst that hits our household at this time of year.

And me?  Well, my run for autism is a mere seventeen days away. My training is peaking round about now, with intense speed workouts and long runs.  My final long run before the race will be this weekend, when I will be hitting the road for 20km.  After that I am in taper mode.  I will run less, pre-race jitters will set in, and I will be driving everyone crazy by the time race day arrives.

Oh, and George finally lost his first tooth.  He has already announced that he wants to buy another pineapple with the money left for him by the tooth fairy.

Filed Under: back-to-school Tagged With: , , , , ,
post

Mommy is a pineapple

August 25, 2010 By

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.

Filed Under: Children, Play 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: , , , ,
« Previous Page