post

Vaccination Vaccilation

March 8, 2011 By

Several weeks ago, I got a letter in the mail from Toronto Public Health, informing me that if George’s vaccinations weren’t brought up to date, he would be suspended from school. There is a series of shots that he was due to receive when he turned six, and due to a number of logistical factors, including the retirement of our doctor and George’s phobia of anything medical, we just hadn’t gotten around to getting them. I called the number listed on the letter and spoke to a very nice lady who told me that the six required vaccinations could be administered with just two needles.

While two shots certainly seems more manageable than six, we have still not been able to get this done. Since our doctor retired, we have still not been able to get another one. There is a dire shortage of doctors in Ontario, much less doctors who are good with children who have autism. There is a walk-in clinic that we’ve gone to frequently enough for them to know us, and they do carry all of the vaccines, but it’s one of these first-come first-served places.

Jabbing needles into the arm of my child with autism is something that requires epic planning. We would have to find a doctor who we could make an appointment with. We would have to secure the very first appointment of the day to guarantee no waiting. We would have to prepare George, ourselves, and the staff at the doctor’s office. The whole thing would have to be done much like a military strike: go in, do what needs to be done, and then leave.

You can’t do that at a walk-in clinic. There, you show up and wait your turn, which could give your child up to two hours to have a complete meltdown and make dents in the drywall with his head (I ain’t kidding about that, by the way).

In between our phonecalls to locate a suitable doctor, we have been doing research on vaccines.

I should say at this point that I have never believed in the connection between autism and vaccines, and I still don’t. Whenever I admit this within my autism circles I create a bit of a stir, because it would seem that most people do not agree with me.

I would never presume to speculate on what does or does not cause autism in other peoples’ children, but looking back, I knew that something was not right with George from a very young age, before vaccines even entered the picture for him. If I were to guess at the root of the problem, I would say that it is a genetic roll of the dice combined with certain dietary elements.

Much to the horror of many parents (whether they have children with autism or not) I chose to vaccinate James even after I knew about George’s autism.  That’s how much I do not believe in the vaccine/autism link.

So the research we have been doing is not from an autism angle. It is from a general health and wellbeing angle. Some vaccines apparently (depending on which websites you believe) contain potentially toxic ingredients that really don’t need to be there. These ingredients can do things like challenge the immune system and create a propensity to getting mild upper respiratory complaints.

And as convenient as it may be, we are debating the wisdom of administering three vaccines per needle, all in one session. That is a lot of stuff to be putting into the human body all at once. I’m no doctor, but I’m not sure that the human body is designed to be blasted in such a manner.

We fully intend to get all of George’s shots updated. We may just take our time and spread them out. It will involve more trauma for George, but there is a chance that it will be better for his long-term physical wellbeing. When James turns six, we will have to make the same decision for him.

In the meantime, while we are waffling around trying to decide whether to get George his shots, the Toronto Public Health deadline is upon us. With just two days to go until imminent suspension, we decided to apply for an exemption. We completed a Statement of Conscience, which basically says that we believe vaccinations are not the right option for us at this time.

It just buys us a little time to do this properly, without pressure bearing down on us.

 

Filed Under: health, Vaccinations Tagged With: , , , , , , , , ,
post

Vaccination Vaccilation

March 8, 2011 By

Several weeks ago, I got a letter in the mail from Toronto Public Health, informing me that if George’s vaccinations weren’t brought up to date, he would be suspended from school. There is a series of shots that he was due to receive when he turned six, and due to a number of logistical factors, including the retirement of our doctor and George’s phobia of anything medical, we just hadn’t gotten around to getting them. I called the number listed on the letter and spoke to a very nice lady who told me that the six required vaccinations could be administered with just two needles.

While two shots certainly seems more manageable than six, we have still not been able to get this done. Since our doctor retired, we have still not been able to get another one. There is a dire shortage of doctors in Ontario, much less doctors who are good with children who have autism. There is a walk-in clinic that we’ve gone to frequently enough for them to know us, and they do carry all of the vaccines, but it’s one of these first-come first-served places.

Jabbing needles into the arm of my child with autism is something that requires epic planning. We would have to find a doctor who we could make an appointment with. We would have to secure the very first appointment of the day to guarantee no waiting. We would have to prepare George, ourselves, and the staff at the doctor’s office. The whole thing would have to be done much like a military strike: go in, do what needs to be done, and then leave.

You can’t do that at a walk-in clinic. There, you show up and wait your turn, which could give your child up to two hours to have a complete meltdown and make dents in the drywall with his head (I ain’t kidding about that, by the way).

In between our phonecalls to locate a suitable doctor, we have been doing research on vaccines.

I should say at this point that I have never believed in the connection between autism and vaccines, and I still don’t. Whenever I admit this within my autism circles I create a bit of a stir, because it would seem that most people do not agree with me.

I would never presume to speculate on what does or does not cause autism in other peoples’ children, but looking back, I knew that something was not right with George from a very young age, before vaccines even entered the picture for him. If I were to guess at the root of the problem, I would say that it is a genetic roll of the dice combined with certain dietary elements.

Much to the horror of many parents (whether they have children with autism or not) I chose to vaccinate James even after I knew about George’s autism.  That’s how much I do not believe in the vaccine/autism link.

So the research we have been doing is not from an autism angle. It is from a general health and wellbeing angle. Some vaccines apparently (depending on which websites you believe) contain potentially toxic ingredients that really don’t need to be there. These ingredients can do things like challenge the immune system and create a propensity to getting mild upper respiratory complaints.

And as convenient as it may be, we are debating the wisdom of administering three vaccines per needle, all in one session. That is a lot of stuff to be putting into the human body all at once. I’m no doctor, but I’m not sure that the human body is designed to be blasted in such a manner.

We fully intend to get all of George’s shots updated. We may just take our time and spread them out. It will involve more trauma for George, but there is a chance that it will be better for his long-term physical wellbeing. When James turns six, we will have to make the same decision for him.

In the meantime, while we are waffling around trying to decide whether to get George his shots, the Toronto Public Health deadline is upon us. With just two days to go until imminent suspension, we decided to apply for an exemption. We completed a Statement of Conscience, which basically says that we believe vaccinations are not the right option for us at this time.

It just buys us a little time to do this properly, without pressure bearing down on us.

 

Filed Under: health, Vaccinations Tagged With: , , , , , , , , ,
post

A Night Away From Home

February 11, 2011 By

They should sell T-shirts that say, “I survived my child’s first overnight stay in a hospital.”  Or they should give out badges, like they do in Girl Scouts. Because let me tell you, it is quite an accomplishment. Just one night in the hospital with my son left me feeling jagged and raw. While I was sitting there yesterday afternoon wondering when I would be able to grab a sandwich and a cup of coffee, I sent a message to my friend Amy, expressing my pure admiration for the fact that she did this in a far more serious situation, day in and day out, for five months.

It all started when James started tossing his cookies at the daycare on Monday. For a full 24 hours he was throwing up and having attacks of diarrhea, and even when they kind-of-sort-of passed, he didn’t get better. By the time I got home from work on Wednesday evening, he was still not eating or drinking, and he was crying out from the pains in his tummy.

Recognizing that most kids’ tummy bugs are over and done with in a day or so, and we were now at the end of Day Three, I took James to the walk-in clinic (no family doctor – ours had the gall to retire, citing stuff like “time with family”). The doctor at the clinic examined James for five minutes and decided he wanted none of it. He told me to get James to the hospital. “Now,” he said.

The triage nurse at the hospital was cranky. She was abrupt and acted as if we were inconveniencing her. I didn’t hold it against her. She was nearing the end of what had probably been a long shift in the emergency room, but still. Being cranky with a sick five-year-old seems a bit much. She did her thing and then sent us off to see the admitting doctor – go to the room at the end of the hall and wait in partition D, she said.

The doctor was cranky. He overheard James saying that we were looking for “Number D” and grumpily said, “D is not a number.”

For God’s sake. I mean, I know E.R. doctors are taxed to the limit. These guys are on their feet for long shifts during which they no doubt have to make many life-or-death decisions, but come on. Don’t take out your stress on a five-year-old child who is visibly ill.

Anyway.

The doctor examined James and said that he was severely dehydrated. He invited me to feel James’ hands. I did, and they were ice-cold. The dehydration had made his core body temperature drop right down. We were taken to a dedicated examination room and IV fluids were started. Within 20 minutes, James’ temperature was looking better.

The on-duty pediatrician came in, examined James, and made the decision to keep him in overnight. He was transferred to the pediatric floor, and we were installed in a room. I helped the nurses get James as settled as he could be, and then I lay in the bed provided for me and failed to sleep. Every now and then I kind of sank into a trance, only to be roused by the comings and goings of the nurses who came in to fuss over James every now and then.

James was in much better spirits when he woke up in the morning. He still couldn’t eat, but he requested and received a Popsicle. In a turn of events that was very sweet, when the nurse came in with the Popsicle, he asked her if she would please get another one for his Mommy. We sat there in companionable silence, eating our Popsicles together (and it was so welcome – my throat was parched), and then another nurse came in bearing gifts.  Apparently, every child admitted to the pediatric floor gets a bag of toys that they get to take home with them.

I borrowed a BlackBerry charger from the doctor, and was able to be in touch with the outside world again. I read and responded to emails, James played with his new toys plus the ones his Dad had brought him from home during the night.  Apart from the occasional stomach cramps and attacks of diarrhea still plaguing James, all was well, if a little bit boring. IV fluids continued to drip into his system, and the comings and goings now involved a different group of doctors and nurses.

In the middle of the afternoon, I was finally able to get a cup of coffee and a sandwich. By this point I was beyond exhaustion and beyond hunger. With the nurse watching James, I fled to the donut shop, where I got a sandwich and a cup of coffee. Then, in a bid to extend my freedom for a little longer, I went into the gift shop and got James a new Cars toy and a book.

Back upstairs, I drank my coffee and ate half of the sandwich. I promptly threw both of them up.

Lovely. Just as my son is getting better, now I start to get sick?

Since I have not had a repeat episode since then, I am assuming that my system was just responding to exhaustion, and that the shock of actually receiving food for the first time in 24 hours was a bit too much for my body.

In the late afternoon, the pediatrician came in and declared James almost well enough to go home. He was hydrated again, he was drinking on his own, and he had even managed a bit of food. All we were waiting for, she said, was for him to pee. Once he had peed, we would know that fluids were getting both into and out of his system OK. In the I.T. world, we would refer to this as end-to-end testing.

A couple of hours later, James’ bladder obliged, and we were given the all-clear to leave. The IV was disconnected, final temperature and blood pressure checks were done, and we were out of there. James was definitely a much more healthy, brighter child than he had been before going in.

It felt almost obscenely good to be back home.

James is OK. George, who was doing a great deal of his own throwing up in our absence, seems to be on the mend. I have not tossed my cookies again (although, to be fair, I haven’t taken a chance on eating either).

Equilibrium seems to be returning…

And I am truly grateful to the doctors and nurses at Centenary Hospital for taking such good care of my baby.

Filed Under: hospital, Illness Tagged With: , , , , , , , , , , , , , ,
post

I Thought It Would Be Hard

January 8, 2011 By

Captain Snuggles

I thought it would be hard to do this one-post-a-day thing, but I find myself with an abundance of material.  Sure, it can be hard to find the time to write, what with a full-time job, a long daily commute, and the whole parenting enchilada.  But I find that the key element is having the seed of an idea in my head.  If I have that to start from, the words flow easily.  To be fair, these are early days, and I’m only one week into this challenge.  A month or six months from now I may be singing a different tune entirely.  But for now, I’m finding this OK.

I thought it would be hard to run a half-marathon.  I was overweight, unfit, and didn’t feel capable of walking down a flight of stairs.  But I planned and trained, I lost weight and got fit.  I still thought it would be hard, because you know, thirteen miles is thirteen miles.  I reasoned, though, that this was two and a half hours of running, of merely putting one foot in front of the other.  Compared with what my son George has to endure, trapped in his world of autism, day in and day out, two and a half hours of running didn’t seem to be too bad.

I thought it would be hard to be a special needs Mom.  I remember sitting in the doctor’s office, receiving the diagnosis, listening to the doctor tell us everything that George would never achieve (some of which he has, in spectacular fashion, since accomplished).  I thought that parenting my beautiful boy would be a lifetime of challenges and heartbreaks.  And yes, there is some of that.  There are days when it all seems too much, when I want to ask the gods of fate why they picked me to fulfill this extremely challenging role in the life of another human being, one who needs special care and attention.

But when I compare that to what some other parents have to go through, it doesn’t seem too bad.  About fifteen years ago, I attended the funeral of a seven-year-old girl who had died from a diabetic complication.  My fiance’s cousin lost his seventeen-year-old son to cancer a little more than a year ago.  Witnessing parents burying their children is awful.  It’s the saddest thing in the universe.

My friend Amy – someone I met through the magic of the Internet just a couple of months ago – is watching over her son David, a.k.a. Capt. Snuggles.  The Captain has a genetic disorder that three of his brothers were also born with.  Nathaniel had just five days on earth before this disease – Citrullinemia – took him from his parents.  Jonathan and Zachary received transplants to “cure” them.  David received a transplant as well, but he is so deep in the woods right now that medical experts are struggling to bring him out.

The last few months have been a series of setbacks and progressions.  Some days good, some days bad.  Right now, things are not looking great, and Amy is now having to endure conversations about “Do Not Resuscitate” orders.

Miracles can happen.  I am writing this in the belief that Capt. Snuggles is going to pull through this and go home to live with his family.

I thought it would be hard to raise a child with autism.  But what I have to go through is nothing compared to what some other parents have to endure.  At least my child is alive.  At least I can kiss him goodnight with the reasonable expectation that I will get to hug him when he wakes up the following morning.

When I think about Amy and her family, and what they’re currently living with, I find myself grateful – tearfully, overwhelmingly grateful – for every single second I have with my boys.

(Click here to read Amy’s story)

Photo credit: Amy (http://transplantedx3.wordpress.com)

Filed Under: Illness, postaday2011 Tagged With: , , , , , , , , ,
post

Invasion of the Body-Snatcher Bugs

December 7, 2010 By

OK, that’s it.  I’ve had enough of this nonsense, and it is time for me to take charge of this situation.  My body belongs to ME.  It does not belong to this pesky bug that is invading it, making it feel sick and trying to keep it down.  This bug has been here before, and on previous visits I have waited until I was sick for weeks before seeing a doctor and getting rid of it.  Earlier this year, right after I had recovered from my injury, this bug hit. I allowed it to go untreated for almost a month, by which time I had bronchitis, was being tested for pneumonia, and was under instructions from my boss to not show up at work until I had a clear chest X-ray.  NOT THIS TIME!!!

I’ve been sick for about a week, and initially I thought I was just catching a cold.  But when I get colds, I get a stuffy nose and an unreasonable sensitivity to normal Kleenex.  I become a tissue-snob, insisting on the expensive super-cushioned tissues because the regular ones feel like sandpaper. My eyes go red and rheumy, as if I’ve been on a month-long drinking binge. My skin gets red splotches all over it that makeup only serves to accentuate instead of conceal.

That’s not what I have. What I have is the fact that I cough up a lung every five minutes or so. It’s the kind of coughing that is so invasive that people who have workstations on the other end of the floor keep coming over to ask if I’m OK.  I have headaches. I am hungry because I am not eating properly.  I am not eating properly because whenever I have food in front of me, I suddenly feel ill and cannot face the thought of eating it. During parts of the day my entire body aches, and I am completely sapped of energy.

This cough, which I can tell from unfortunte prior experience is on the slippery slope to bronchitis, is troublesome for several reasons:
– I cannot run. This is bad for my physical wellbeing.  I need my exercise.  I am getting married 145 days from now and have to look prettier than Kate Middleton, who’s getting married the previous day.
– My incessant barking is bound to annoy the people around me.
– I cannot run. This is bad for my mental wellbeing.  Not running is driving me crazy, and that’s already a short trip.  I don’t need any help with that.
– Every time someone says something funny and I laugh, I end up breaking out into the ugly,hacking cough.
– During the really, really bad episodes of coughing, a tiny little bit of pee escapes.
– I cannot run.  I miss my Sunday long runs with the running club, and I miss my solo runs with my music.
– The kids are getting tired of having their bedtime stories punctuated by coughing.

My tendency to get bronchitis is probably my own fault.  I never had this problem when I was a kid.  I first got bronchitis when I was about 21 and not following the healthiest of lifestyles.  Although I succeeded in quitting smoking almost fifteen years ago, the fact is that I was a smoker for a decade and probably weakened my lungs considerably.  I am hoping that the more I run, the stronger my lungs will get and the less this will happen.  The fact that I have not been sick since February is an indication that things are moving in the right direction.

Today I will be going to the doctor, who will no doubt give me some nice drugs to take.  Within a day, I will start to feel the cough retreat, and by the weekend, I could be running again.

Let the war on the bug begin…

Filed Under: bronchitis, health, Medical Tagged With: , , , , , , , ,
post

Invasion of the Body-Snatcher Bugs

December 7, 2010 By

OK, that’s it.  I’ve had enough of this nonsense, and it is time for me to take charge of this situation.  My body belongs to ME.  It does not belong to this pesky bug that is invading it, making it feel sick and trying to keep it down.  This bug has been here before, and on previous visits I have waited until I was sick for weeks before seeing a doctor and getting rid of it.  Earlier this year, right after I had recovered from my injury, this bug hit. I allowed it to go untreated for almost a month, by which time I had bronchitis, was being tested for pneumonia, and was under instructions from my boss to not show up at work until I had a clear chest X-ray.  NOT THIS TIME!!!

I’ve been sick for about a week, and initially I thought I was just catching a cold.  But when I get colds, I get a stuffy nose and an unreasonable sensitivity to normal Kleenex.  I become a tissue-snob, insisting on the expensive super-cushioned tissues because the regular ones feel like sandpaper. My eyes go red and rheumy, as if I’ve been on a month-long drinking binge. My skin gets red splotches all over it that makeup only serves to accentuate instead of conceal.

That’s not what I have. What I have is the fact that I cough up a lung every five minutes or so. It’s the kind of coughing that is so invasive that people who have workstations on the other end of the floor keep coming over to ask if I’m OK.  I have headaches. I am hungry because I am not eating properly.  I am not eating properly because whenever I have food in front of me, I suddenly feel ill and cannot face the thought of eating it. During parts of the day my entire body aches, and I am completely sapped of energy.

This cough, which I can tell from unfortunte prior experience is on the slippery slope to bronchitis, is troublesome for several reasons:
– I cannot run. This is bad for my physical wellbeing.  I need my exercise.  I am getting married 145 days from now and have to look prettier than Kate Middleton, who’s getting married the previous day.
– My incessant barking is bound to annoy the people around me.
– I cannot run. This is bad for my mental wellbeing.  Not running is driving me crazy, and that’s already a short trip.  I don’t need any help with that.
– Every time someone says something funny and I laugh, I end up breaking out into the ugly,hacking cough.
– During the really, really bad episodes of coughing, a tiny little bit of pee escapes.
– I cannot run.  I miss my Sunday long runs with the running club, and I miss my solo runs with my music.
– The kids are getting tired of having their bedtime stories punctuated by coughing.

My tendency to get bronchitis is probably my own fault.  I never had this problem when I was a kid.  I first got bronchitis when I was about 21 and not following the healthiest of lifestyles.  Although I succeeded in quitting smoking almost fifteen years ago, the fact is that I was a smoker for a decade and probably weakened my lungs considerably.  I am hoping that the more I run, the stronger my lungs will get and the less this will happen.  The fact that I have not been sick since February is an indication that things are moving in the right direction.

Today I will be going to the doctor, who will no doubt give me some nice drugs to take.  Within a day, I will start to feel the cough retreat, and by the weekend, I could be running again.

Let the war on the bug begin…

Filed Under: bronchitis, health, Medical Tagged With: , , , , , , , ,
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

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: , , , , , , , , , ,
« Previous Page