Tag Archives: disability

Spectrum Musings

10 Mar

Sometimes I wonder if George got his autism from me.

I don’t say that with any sense of guilt. If he did get it from me, I don’t feel bad about it. After all, I can hardly be held responsible for my genetic composition. It’s not as if I had any control over what DNA I landed up with.

I wonder about this question, though, from a purely scientific, curious point of view. Because although I’ve never been screened for it, it would not surprise me one bit if I were to learn that I am on the autism spectrum.

When I was a baby, I cried. I know, that sounds like a ridiculous statement. Of course I cried. That’s what babies do. In my case, however, I couldn’t be soothed. My poor Mom would change me, feed me, rock me, try to get me to sleep. No matter what she did, I cried relentlessly, for hours at a time, for no apparent medical reason. Mom surmised that maybe I was reacting to a feeling of  rejection after my birth mother had given me up for adoption.

Adoptions in those days were closed, and no information was exchanged between the birth mother and the adoptive parents. My Mom knew nothing about where I had come from. She told me in later years that she just assumed there was some factor she did not know about that was causing all this angst in me.

When I was a very young child, it became apparent that I had notable developmental delays. I was a very late talker, and did not show signs of functional speech until the age of five. It took me a lot longer than my peers to learn how to read (although it must be said, once I did learn, it was like a floodgate had opened, and I read everything I could get my hands on).

At the same time, I had issues with motor skills. I was uncoordinated, and stubbed my toes a lot. I did not have the strength to hold a pen, and I didn’t even know, until some species of therapist did some testing on me, that I was left-handed. My hand-eye coordinatin was nowhere and I had to be taught it while other kids seemed to just pick up on it naturally.

There are certain sensory things that I find hard to handle. Flickering lights (although, to be fair, that would probably drive most people batty). The textures of certain foods. Clothing labels have the ability to make me want to chew off my own arm in frustration. When Gerard has the TV on too loud, I actually want to scream. Hearing too many sounds from too many different sources (TV, dishwasher, telephone, whatever) invokes a feeling of intense anxiety.

When I’m stressed I rock back and forth. I find it calming, I find that it can sometimes stop the stressful feeling from escalating.

One of the most telling factors in my musings, however, is my social awkwardness. I have had this problem throughout my life. As I get more comfortable with specific people, my social ineptness becomes less apparent, and I work hard to hide overcome it in my day-to-day life.

Social gatherings can be excruciating for me. High school was just torture – I so badly wanted to fit in, but I couldn’t be social enough and my attempts came across as awkward and embarrassing. The only person at school who I felt completely comfortable with was my friend Jenny, who remains my best friend to this day.

There are certain social situations that make me feel even more uncomfortable: conflict, meeting new people, situations where I unexpectedly have to make small talk, anything to do with telephones.

Gerard has remarked several times that I seem to have a special connection with George. When he is having a meltdown, I seem to have the ability to just know what to do, to know what he needs. It can take a long time to calm him down, but in most cases, I can just know – without explaining how I know – how he needs to be spoken to, held, comforted, soothed.

And I wonder why this is.

Is it a normal motherly instinct?

Or do I, in some ways, inhabit the same world George does?

(Photo credit: http://www.flickr.com/photos/53416677@N08/4972850923)

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Lost For Words

13 Jan

I think the Internet was the best thing ever invented.  OK, make that the second best thing, after coffee, which when you think about it, wasn’t actually invented in the true sense of the word.  One reason the Internet is so great is that it enables me to keep in touch with people without actually having to talk to them.

Lord, that sounds awful, doesn’t it?  It makes me sound like an arrogant, antisocial jerk who doesn’t care about the people in her Facebook friends list.  Let me assure you that this is not the case.  I care about people a great deal, and my friends are very, very important to me.  I realize that this is the kind of thing that anyone would say, even people who would sell their grandmothers to the devil.  But I really do mean it. I have my fair share of faults, but I believe that the people I care about would describe me as a good and loyal friend.

So when I say that I want to keep in touch with people without talking to them, it’s not the actual people that I have an aversion to.  It’s the talking.

Let me pause for a moment to say this: what I am sharing today is a glimpse into a part of my life that I have difficulty with.  It is something that, while not exactly earth-shattering, is not easy or comfortable to talk write about.  And while there are certain aspects of my life that I will never share publicly, I just-about-kind-of-sort-of feel brave enough to discuss this.

You see, all my life I have suffered from pretty intense social anxiety and awkwardness. While I always enjoy being around people, I frequently don’t know what to say when I’m with them.  Or to put it more accurately, I know what I want to say but I find myself unable to say it.

Are you confused yet?

Here’s what it’s like for me.  I often find, when I am talking to people, that I am able to formulate an idea in my head.  I can script the words I want to use in order to verbally express that idea.  But when it’s actually time for me to utter those words, I cannot.  The best way to describe it is that the words get lost somewhere between my brain and my mouth.  It’s as if the synapses in my brain that are responsible for translating thought into speech just aren’t firing.

Picture yourself sitting in your car in your driveway, intending to drive to the post office, and suddenly discovering that all of the roads between your house and the post office have suddenly disappeared.  So you sit in your car at home, at a loss as to what to do.

Or if you’re me, you sit there not taking part in the conversation, and people just assume that you don’t have anything to say.  And you get more and more frustrated because you do have something to say, but you are unable to say it. Or when you can say it, you sound awkward and stilted, and because this whole conversation effort is so stressful, you come across sounding abrupt or disinterested or babbling in an uncomfortable way.  If I’m in a situation of conflict with another person, this problem multiplies a hundredfold.

Some people who know me personally are probably reading this and going “Huh?”  This verbal debilitation I experience is not visible to everyone – a lot depends on who I’m talking to and what the circumstances are.  This problem is a disability of sorts, and people with disabilities learn how to adapt, and how to live life as seamlessly as possible without letting the disability take over.  But even at times when I give the appearance of having a normal conversation, I am capable of feeling a level of anxiety that most people probably cannot relate to.

Although certain events in my life may have exacerbated this issue, it is really something that I have always lived with.  I had a variety of developmental delays as a child, and only developed a reasonable level of functional speech at the age of five.  Throughout my childhood and adolescence, my social development was far behind that of my peers.  At an age where most of my contemporaries were going to parties, acquiring boyfriends, and traveling in large, noisy packs, I was the quiet, awkward one who never said much.  My social anxiety was frequently misconstrued as shyness.

As an adult, this has impacted my life in a number of ways.  Certain events in my life can be attributed at least partly to the fact that I did not have the social skills I needed to deal with things differently.  These events have ranged from the minor events that you forget about the next day to the bigger events that stay with you for life.

My social interactions tend to vacillate between two extremes: one the one end, I kind of clam up and don’t say anything.  On the other end, I talk non-stop, saying inconsequential stuff to cover up the anxiety I feel.  In the middle of these two extremes are the “normal” interactions I enjoy with my family and my closest friends; with people that I have a high degree of trust in.

Telephones terrify me.  Seriously.  I hate the things.  If I could get through life without ever talking on the phone, I’d be happy.  When I do find myself on the phone, I get the hell off as fast as I can.  Again, there are exceptions.  My Mom?  I could talk to her on the phone all day.

I love to write.  Love, love, love it.  My tendency to lose words does not extend to my writing – in fact, I have a theory that my writing skills have developed pretty well in order to compensate for the difficulties I have with oral communication.  This is a good outlet for me.  It is a way for me to share a part of myself with the world, without going through the anxiety that I might otherwise experience.

I find my social anxiety issues to be disabling at times, but being the eternal optimist, I strive for things to be better.  I adapt, I compensate, and I seek opportunities to overcome.

(Photo credit: Flickr Creative Commons Attribution License)

Why so quiet?

16 Jul

Some time back, my son James, who is all of four years old, announced that he had a pet monster named Billy. Billy, apparently, is a yellow monster with tall hair.  He is friendly, and judging from James’ descriptions, he is the laziest being on the planet.  From time to time he will sit beside James while he is playing or eating, but for the most part, he just sleeps. Sometimes, rather bafflingly, Billy will perch on my head as I go about my day.  Occasionally, James will yell at me because I inadvertently walk through or stand on Billy. An apology is always called for: I have to stand there apologizing to an imaginary monster, feeling – and no doubt looking – like a complete idiot.

The existence of Billy is a testament to James’ active imagination, and also to his veryu sound verbal skills.  This kid is so good at putting his mental pictures into words that I can almost picture Billy perched on the couch next to James watching him eat his spaghetti. James can talk.  James does talk.  Once James gets going you cannot get him to stop.  His thoughts and stories just run out his mouth – very coherently, but sometimes to the point of exhausting his audience, who has to keep track of increasingly complicated storylines.

James and his dad are in a dead heat for the title of “Talker of the family”. I tend to be somewhat quieter, and George doesn’t really talk at all unless he has to.  This is not unusual for a child with autism, but it is something that we are on a permanent quest to change. In today’s world, people need the ability to talk – or at least, to communicate. George has become remarkably self-sufficient in many ways: he will go to all kinds of lengths to do something himself in order to avoid asking for it.

It is easy to attribute this speech aversion to autism, but that does not really answer the question of why. Sure, George doesn’t talk because of his autism, but why is it that auties have this challenge?  In the beginning the answer seemed simple: lack of vocabulary. By the age of three, George only had about thirty words – ten or so of which he was using in their correct contexts, and never more than one word at a time.  Almost four years later, the vocabulary has been increasing exponentially.  George can label just about everything he sees, and he can correctly identify a number of verbs, adjectives, and emotions. He is able to string together simple sentences now. He uses his alphabetic fridge magnets to construct elaborate, grammatically correct sentences that we have yet to hear spoken. So the vocabulary, grammar, and sentence structure are there.  The comprehension is there too, since George will respond appropriately to most things that are said to him.

Another possibility that was presented to us is that auties frequently have a problem with motor planning. What this means is that a kid might have the physical strength and ability to, say, throw a ball, but if he has never thrown a ball before, he will have trouble figuring out what steps he needs to follow in order for the ball to become airborne. There are a lot of fine motor activities involved in speech, and the theory is that auties just cannot figure out how to translate the thoughts into vocalized sound. George, however, can read. He reads out loud from all kinds of materials. He produces the words and they sound correct. Motor planning is clearly not the issue here.

All we’re left with, then, is the simple fact that George does not see the point of talking. Speech serves a purely functional purpose for him. He uses it to express a want or a need. He will say that he would like milk, that he wants to go and play in the back yard, or that he would like a hug. He will answer questions. But apart from one or two rare occasions, he will not use speech to initiate a purely social interaction. He will not say things like “I love you” unless it is said to him first.

We are starting to see some promising signs, though. A couple of weeks ago, he asked me, completely off his own bat, if I was OK. When his brother accidentally spilled a cup of milk, George reacted with a genuinely spontaneous “Whooooooops!” While he still uses speech mostly to request things, he is at least starting to request things of a more social nature.  He will say, “Let’s run!” to indicate that he wants to play a chasing game, or “Horsey!” to indicate that he wants to jump on my back, ride around on me, and pretty much cripple me for the next four days.

I suspect that George will never be much of a talker.  I think he will always be quiet and shy – and that’s OK – he has to be true to who he is and the rest of us have to respect that.  But little by little, we are seeing him emerge for brief moments into our world, and he is allowing us little glimpses into his.

A whole new world of hope

19 Apr

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.

Retrospectively speaking…

25 Mar

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.