post

A bitter pill – well, not quite

June 2, 2010 By

A long time ago, I discovered that George and pills should not be combined, in the same way that bulls and china shops should not be combined. Both mixtures are a recipe for chaos and mass destruction.  So when George came down with a UTI a week ago and got put onto medication, I specifically asked the pharmacist to provide it in liquid form.  My theory was that I could just put the goo into his milk and he’d drink it, without ever knowing that there were drugs involved.

But my subterfuge did not work.  For a start, the medicine, which is the colour of Pepto Bismol, made the milk turn pink.  I did not honestly think this would be a problem.  The milk was put into George’s favourite (and opaque) Thomas the Train cup, which has a lid.  You couldn’t even see what colour the milk was.  However, we ran into an additional problem, which is that the medicine made the milk taste funny.  Still, I nonchalantly handed the cup to George, who took a mouthful and then immediately did something very strange with his face.  He scrunched up his eyes and kind of sucked his face inwards (imagine someone trying to turn a lemon inside out), and then his face erupted outwards again with a kind of “THWOO” sound, and pink milk exploded all over the place.

OK, this was clearly not a feasible plan.  I had to switch to Plan B, which was to just put the medicine in a syringe, aim for George’s mouth, and hope for the best. I recognized that his arms and legs were going to be the problem.  If I could keep the arms and legs still, I’d be able to pull this off.  I couldn’t be intense about it, though.  This is an autistic child we’re dealing with – I had to constrain him and get the goo into him firmly but gently, with lots of encouragement and no sign of any emotion that would escalate his anxiety.  Since I was going to have to get his buy-in to do this three times a day for a week, my approach for that first dose was crucial.

I laid him down on the couch and used a blanket to wrap him up like a burrito.  He was a little bemused by this odd action, but apart from squirming a little, he did not protest.  I sat astride his legs to keep him from kicking, and picked up the loaded syringe.  Holding his face gently, I got the medicine into him, bit by bit.  He did not like it.  He cried and complained.  He tried to get away.  But he swallowed the entire dose without spitting any out.  The whole time, James was lying beside him on the couch, kissing his cheek, hugging him, comforting him, saying over and over that everything was OK.  The sight of this four-year-old – so young and yet so intuitive – taking care of his brother was enough to bring tears to my eyes.

Now, with just one or two days of the medication to go, George is more used to the routine.  He still doesn’t like it, but he voluntarily lies down on the couch, and I only have to cover his arms with the blanket instead of actually wrapping him.  He always protests in the beginning, usually to say “James’ medicine” in hopes of avoiding the inevitable.  But he takes the medicine and is not too traumatized by the whole process.

Once the medication issue was under control, I had to deal with the little plastic jar that the doctor had given us, with which we were required to collect a urine sample.  I was worried: how was I going to get George to pee in a jar?  He has very set ways of doing things, and I thought this concept would just be too strange for him.  As it happened, we did have an issue, but not the one we expected.  George had no problem peeing in a jar, and we had the requisite sample with the minimum of fuss.  But now that he had done it once, he expected the jar to be a part of the regular bathroom process.  For about two days he tried to hold it in because he didn’t have the jar.  We have managed to knock that on the head, thank goodness.

So there we have it.  George is becoming a pro at taking medicine (in liquid form, anyway), he seems to be gradually getting better, the jar and its contents have been dropped off for analysis, and relative peace reigns in my household.

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

Stop the world, I need to breathe!

May 8, 2010 By

To say that the last week has been a bit eventful would be like saying Hitler was a bit aggressive.  It’s either feast or famine in my life.  Things will chug along, same-old-same-old, for weeks at a time, with nothing changing and nothing really newsworthy happening.  Then all of a sudden, I will have several weeks’ worth of events will flock to me like mosquitoes flock to my husband (seriously, bugs love him and for the most part, avoid me.  Why is that?)

Last Sunday I ran a race, the Sporting Life 10K in downtown Toronto.  It was a phenomenal event featuring more than 14,000 runners and superb race organization.  The logistics of planning something that involves that many people must be akin to a nightmare, but these guys pulled it off flawlessly.  The run itself was a lot of fun.  The route was easy, downhill most of the way, and the weather was perfect.  The predicted thundershowers failed to materialize, but the cloud cover and the gentle breeze were in evidence.  I completed the run in 1:05:00 – fast enough for a personal best time for the distance, but still leaving plenty of room for more personal best times in the future.

A quick word about something Gerard did for me before the race.  When he and James dropped me off at the start line, I gave James a kiss, and then went round to the back of the van to pick up my bag.  Only to see that Gerard had propped up a framed picture of my Dad next to my bag.  Dad, who died five years ago, was also a runner – one of the best in South Africa at his prime – and this was Gerard’s way of telling me that Dad was with me.  I was so touched, it brought tears to my eyes.

Several hours after the race, I started feeling a little off.  I figured that I had pushed myself on the run, not eaten soon enough afterwards, and consumed way too much coffee.  Feeling a little sick made complete sense to me.  But then – there’s no polite way to describe this, really – I started tossing my cookies.  Big time, for several hours.  Many hours, in fact.  Until 4:00 the following morning.  Even when there were no cookies left, the cookies continued to be tossed.  It was clear that I had a bug.  I had felt fine for the run – perhaps the bug was lurking there in the corner, just waiting for its moment to arrive.  Although the throwing-up incidents came to an end after about sixteen hours, I felt weak and drained for several days.

On Sunday afternoon, about an hour after I started feeling sick, I heard from Robert, the brother of my friend Tim.  Tim, who had recently been diagnosed with stomach cancer, had passed away.  Tim and I were friends for years.  We wrote columns for the same e-zine, and Tim was my unofficial tech support guy.  When George was diagnosed with autism, Tim was the guy who recognized my need for an outlet; a place to write and vent about autism and what my family was going through.  He gave me a forum to do so, and he was supremely supportive of everything – my parenting, my running, my writing.  He was also one of the funniest people I’ve ever known.

Fast forward to Thursday afternoon.  I was sitting at work, an hour away from going to the Keg with a few of my coworkers to bid farewell to someone who was leaving to go and live in Abu Dhabi.  I had resolved to drink nothing but water at the Keg – I was still feeling mild effects from the weekend stomach bug.  Work was going smoothly enough, when I got a phonecall from George’s therapy centre.  The news was good and bad.  The good news is that they wanted to put George into something called the school stream.  Instead of receiving one-on-one therapy, he would be in a simulated classroom environment with four other children.  The concept sounded good but the timing sounded bad.  When I expressed the opinion that George would not be ready for this by the proposed start date of September, I was told that if he continued with his one-on-one therapy, he would most likely be discharged in December.  Meaning that by January, he would be thrown full-time into a school system that he is nowhere near ready for.  The one day a week of school that he does get is challenging enough.  What this whole conversation left me with is the feeling that I am having to make a critical decision that could make or break George.  It’s like playing Russian Roulette with my child’s future.  What I decided, there and then, was that we had to fight as hard as we needed to to get the best for George.  Thanks to the advice of someone I know who has been through these fights for her own son and knows the system backwards, I was able to tone down some of the anger and gloves-off fighting attitude that I would have gone in with.

I didn’t only drink water at the Keg that afternoon.

On Friday morning, Gerard and I had a meeting at the therapy centre.  We got to see the classroom that is used for the school stream kids, and we were allowed to observe proceedings.  We asked a ton of questions, and got a clearer picture of the program.  In school stream, a teacher works with a group of five children in a mock classroom setting.  Each of the five kids still has a one-on-one support staff member with them, to prompt them as needed.  It’s kind of like a cross between what George is getting now and school.  The whole idea is get kids used to the idea of following school routines, walking in line, participating in class discussion.  In essence, school stream prepares kids for full-time school.  It’s a half-day program; for the other half-day, the kids are in fact in school.  That aspect of the program is simply to get the kids used to being at a real school every day, even if it’s just for a couple of hours.

Here’s what sold us on this program: social communication.  That is George’s single biggest challenge – one that, by its very nature, one-on-one therapy cannot really address.  The school stream program could be hugely beneficial to George from that aspect alone.  The whole thing is based on group interaction and the need to communicate and participate.  The program typically lasts for a year, but if the child needs it for longer, it can be extended.  It includes regular speech therapy, occupational therapy, and social communication workshops.

We said yes.  On seeing the program in action and getting all the facts, it does seem like the right thing to do.  It is the next logical step in this roadmap that is George’s life, and I am excited about the potential it has for him.  He will be continuing with his current program until September, and then switching to school stream in September.

After this was all sorted out, Gerard and I went on to James’ school where there was another occasion for us to attend.  James is a new inductee to the school system, having just started Junior Kindergarten last September.  With a Christmas birthday, he is the youngest and smallest kid in his class.  He needed special nurturing in the beginning, and his teacher, Mr. T., took him under his wing.  James adored his teacher, who was popular with the entire student body: he doubled as the school librarian and frequently gave the kids a break on their late fees.

In December Mr. T., who had recently celebrated his thirtieth birthday, contracted pneumonia and died.  It was a huge shock for everyone; I found myself with the task of explaining the meaning of this to a kid who was still a couple of weeks away from his fourth birthday.  I had to try and make him understand that Mr. T. loved him very much, but was never coming back.  Over the last few months, James has dealt with alternating cycles of grief, denial, and acceptance.

On Friday, he got to say goodbye.  The school put together a memorial assembly, a celebration of life in honour of Mr. T.  James and his classmates sang a song called “It’s a Great Day”, a cheerful song that Mr. T. would have approved of.  My heart swelled with pride and my eyes filled with tears.  There were more songs performed by other classes, quotes, a wonderful slideshow.  I had the honour of meeting Mr. T.’s family – his wonderful parents, brother, and partner.  Will this be effective closure for James?  Only time will tell.

So now I am in a state of exhaustion and very heightened emotion.  I feel overwhelmed and a little stressed.  I know that I just need to give myself time to wind down from all of these happenings.  I am sure tomorrow’s 19km training run will help!

Filed Under: autism, Bereavement, Medical, running, School, Teacher 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

Retrospectively speaking…

March 25, 2010 By

This morning I indulged in a bit of retrospection.  I was looking back at the day, almost three years ago, when a doctor broke the news to Gerard and I that our son had autism.  I remember that moment with such sharp clarity that just thinking about it brings back that stab of pain to my heart.  As I sat in the chair in the doctor’s office, I could almost feel the physical force of my world crumbling; I am convinced that the odd buzzing sound I heard was the sound of my expectations shattering.  In that instant I learned that the phrase “to have a weight on one’s shoulders” is not merely metaphorical: I actually felt a physical weight being placed on my shoulders.

The next half-hour or so was intensely painful.  Gerard and I sat and listened as the doctor told us his prognosis for George.  He may never talk, the doctor said.  He has very limited capacity for learning, and as he gets older the gap between him and his peers will get wider and wider.  He will always have severe cognitive delays, he will not be able to function in the world of “normal” people without constant care and supervision.  He probably won’t complete high school; as an adult he may hold down a very basic job but he won’t actually have a career.  We, the parents, were advised to prepare ourselves for a lifetime of intense hands-on parenting.  It all sounded so hopeless, as if George was doomed to a lifetime of misery.

Once the disabling shock and desperation had worn off, I made a decision.  The doctor would be wrong.  I accepted that George might always be different to other people of his age, but we would do whatever it took to help George reach his full potential, whatever that might be.  I was not going to let the well-meaning but pessimistic doctor dictate what George would or would not accomplish.  I would become an advocate for George, I would learn as much as I could about autism, I would give him whatever opportunities were feasible.

And so the hard work began.  My first mission – on the advice of his speech therapist – was to teach him to point.  It was explained to me that pointing is a crucial precursor to basic speech.  Babies point before they can talk; pointing is a very simple, basic, and effective form of communication.  Most kids learn how to point intuitively; children with autism need to be taught.  And so I taught.  Every evening for nine months, I would sit with George and a variety of books, painstakingly pointing to this thing or that thing, using hand-over-hand assistance to help him point.  Prompting, reinforcing, encouraging, never giving up.  There were days when it seemed as if I was getting nowhere.

Are there words in the English language that can describe the immense, overwhelming emotion I felt on the night when George hesitantly, almost shyly, lifted up his tiny hand, formed it into the shape of a point, and with his index finger touched a picture of Bob the Builder in the book we were looking at?  The memory alone makes my eyes go misty.

Since that day, there have been many accomplishments.  George still doesn’t talk a lot, but he makes requests using full sentences.  He even says please.  In recent weeks, he has tentatively entered the world of imaginative play by pretending to be a turtle.  He can read, he can spell out full sentences using his alphabetic fridge magnets.  He counts to a hundred and beyond, and he is learning to do sums using the big wooden abacus that a relative bought for him.  He finds what he wants on the computer without assistance, even typing his own search strings into Google and Youtube.  He has unique but effective problem-solving techniques.  The teachers and therapists who work with him are united in their opinion that George is a very smart kid.  When it comes to numbers, he outperforms typical kids of his age.

There are challenges, of course.  There are the tantrums, the autistic meltdowns, that originate from things I cannot always identify.  There is his refusal to try foods he has never seen, his phobia of doctors, the fact that I have to cut his hair and his nails while he is sleeping to avoid a panic-induced meltdown.  There are the sleep problems that plague us from time to time, especially when there has been a change in routine.  There is his heartbreaking frustration when he tries to express something to us but does not know how to.  There are the times when I have to spend over an hour physically restraining him from banging his head on the wall or the floor.  There are the persistent social communication delays and his anxiety in big groups of unfamiliar people.

Yes, there are a lot of challenges, a lot of days when I want to tear my hair out.  But that doctor was wrong, damn it!  I wish I had the opportunity to tell him so.  I honestly believe that he would be very happy to know that in this particular case, he was wrong.

George is loaded with potential.  I have no doubt that as an adult, he will be one of many autistic people making a truly valuable contribution to society.  It is truly my honour to be running for him and for people like him.

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

Overcoming the bad stuff

March 19, 2010 By

2010 did not exactly start off well for me.  In early December, I had suffered from a strep throat infection, during which I had only been able to lie down comfortably in one position for three days.  This resulted in some stiffness in my neck and upper back.  It was not crippling, merely uncomfortable, and my chiropractor was helping me out with it.  The day before New Years Eve, a chiropractic adjustment went horribly wrong.  I had excruciating shooting pains in my back and going all the day down my left arm.  The fingers in my hand went numb. While everyone else was out partying it up the following night, I was sitting on the couch writhing in agony. I missed the New Years Day Resolution Run – something that I had been looking forward to for weeks.

Over the next month, I went to the Emergency Room twice, was seen by five different doctors, and got four different prescriptions for drugs.  I cried myself to sleep each night because I was in so much pain, and I appropriated the kids’ giant stuffed gorilla because it was just the right size for me to rest my arm on.  I was taking Percocet for the pain every six hours, and when the pain between doses got too much for me to bear, I was taking Tylenol Three as well.

For a month I could barely stand up, let alone run. In the end, it was the folks at Toronto SEMI (Sports and Exercise Medicine Institute) who saved me from insanity.  The doctor there told me what I had suspected, which is that I had a pinched nerve.  The pinched nerves always get resolved, he said, and it could take anywhere from a few days to a few weeks to a few months.  I immediately started seeing one of the physiotherapists at SEMI, and within days I was starting to feel relief.  After two weeks, she told me I could try running again.  Two weeks after that, I was in full-on training mode again, and feeling great.

As soon as I had gotten back on my feet, though, I was struck down again.  I caught a cold, and the cold turned into something a lot worse.  I had a hacking cough, I had a fever that came and went, I was weak.  I was so sick that I was off work for two weeks, and was not allowed back without producing a doctor’s note certifying that I didn’t have one foot in the grave and the other on a banana peel. During this time, I was not able to run for three weeks.

Last weekend marked the end of this three-week drought.  I got up on Sunday morning, and although I was still coughing a bit and somewhat congested, I decided to give it a try. It went surprisingly well – slower than I would have liked, but considering all I’d been through over the last three months, I didn’t mind.  I was just happy that I was out on the road again.

On Tuesday I went for a lunchtime run.  Due to time constraints, my weekday runs cannot really be longer than 5km, but that’s still enough for a good workout.  About 500m into the run, my hair band snapped.  Not a good thing – I have quite a lot of hair.  I ran almost 5km with my hair streaming out behind me.  It reminded me of those movies about horses, where the horses are running across meadows with the hair on their tails flowing behind them in the wind.  That’s what I felt like.  A horse’s ass.  I had also misjudged the weather that day, so I was overdressed.  Hair flying every which way plus clothes that are too hot leads to a run that is uncomfortable and cumbersome.  I was not happy with my pace or the fact that my heart rate was reaching the stratosphere.

My next run was on Thursday.  I almost left my running clothes at home that day, because I had had zero sleep on Wednesday night and did not rate my chances for a good run.  But you never know, so I took my gym bag to work, not really expecting to use it.  Come lunchtime, I still felt like the undead, but knowing from past experience how a run can actually have healing powers, I suited up and hit the road.  My clothes were appropriate and my hair band stayed intact.  It was a gorgeous, sunny day, and I had a fantastic run.  Although the “pace buddy” on my training watch still beat me, my pace was a lot better than it had been on Tuesday.  My heart rate stayed within reasonable levels.  When I reached the end of the 5km, I could have continued.  It was one of those runs that reminds me why I love running.

I am planning another 5km run for tomorrow morning, and a longer one for Sunday.  I am looking forward to my 10km race on April 3rd.  I am hopeful that I will stay healthy this time.  I have to.  After all, there are only 190 days to my next run for autism.

Filed Under: Medical, running Tagged With: , , , , , ,
« Previous Page