Diagnosis and Beyond

When Victor was born, we thought we had the perfect baby. Okay, most parents think that, right? But we truly thought this. He didn’t cry or fuss. He was quite content to be by himself. And in those very early days, he slept.

As the months went by, not much changed. He was still quite happy to be left on his own. Very rarely cried. He would spend hours waving his hands about, watching his fingers. The only thing missing was his words. He seemed to have no desire to communicate with us. Most babies by the time they are 6 or 8 months old have at least primitive speech. Maybe the first sound of a word, like bah for bottle. Not our little man.

He met his other milestones with ease. Sitting up, crawling. He was an early walker, taking his first steps when he was only 9 months old. He still loved to watch his fingers fluttering, loved waving his arms. We always said he’d grow up to be a music conductor. Now, when he stood in the living room he would rock from one foot to the other, smiling away, sometimes waving his arms. Perhaps he’ll be a dance instructor instead, we laughed.

Checkups with the doctor in those first months found that he was the picture of health. However, at each visit I voiced my concern about his lack of speech. My fears were brushed off. Don’t worry about it. He’s healthy. Boys develop later than girls. He’s fine. And my favourite: If he isn’t talking by the time he starts school, we’ll look into it.

By the time he starts school?? Um, no. We’ll be looking into that a LOT sooner, thank you.

Days turned into weeks, which turned into months. His first birthday had arrived. Surrounded by family and friends, he seemed totally oblivious to the festivities. He had his Cheerios, he was good to go. Time to open presents. He had zero interest in finding out what was inside all that shiny paper. Oh well, he is only a year old. Plenty of time for that excitement next year.

Another doctor’s appointment met with the same dismissal of my growing concern that he still wasn’t talking. I was frustrated, but at the same time, the doctor was right. My boy was happy and healthy. And that’s all that matters, right?

Just before his 18-month immunization, my mother-in-law and her sister were over for supper. After the dishes were cleared and we were all sitting with our post-meal coffee, we laughed as Vic entertained us with his conducting an invisible orchestra. My mother-in-law turned to me and asked, “Do you ever wonder if something is wrong with Victor?”

Wrong? What did she mean wrong? Sure, he wasn’t talking, but I had the doctor’s assurance that that wasn’t unusual. True, he didn’t really like a lot of physical contact, but at least I didn’t have to keep him constantly on my hip like some other parents. And okay, he seemed to prefer his own company. But there wasn’t anything wrong with him.

“We watched a show on TV last night about autism. The boy they showed reminded us a lot of Victor.” No way. Autism? What was that, anyway? I laughed it off, happy to file it away as a neurotic concern of a grandparent.

But still, in an effort to prove her wrong, I looked it up after they left. I found the Holy Bible of all first-time parents, What to Expect in the Toddler Years. It’s probably not even in here, I thought. But, there in the list of childhood diseases in the back of the book, I did find a listing for autism. Okay, time to nip this ridiculous notion in the bud.

My heart sank with every line I read. I scanned the list of signs, mentally checking each one as a yes or a no. Yes, yes, yes, yes, yes, sometimes, yes, yes, NO! No, he doesn’t do that!! Yes, yes, yes ….. I can’t swear to the number of signs and symptoms they listed, but it was like someone had been observing my baby boy for weeks. They described him to a tee.

“I think we may have a problem,” I said to his father. I knew then and there that this quirky little bundle of joy had autism. But what was that? I set out to find out. I scoured books, researched at the library. I called Public Health to have them send me information (the Internet was just becoming popular at that time). I used my parents’ computer to find out everything I could.

Some information was very helpful. Some scared the crap out of me. I read first-hand accounts from parents and writers who themselves were “on the spectrum.” I devoured information. I compared The Boy to the kids I read about. I cried as I read stories from parents who tried everything (and I do mean everything) to reach their children. I found hope in the stories of adults (yes, adults) who fought their way through this to become contributing members of their communities. These people held jobs, had relationships, even went to university!

I took Victor in for his immunization and check up, armed with new information. This time, when I voiced my concern about speech and was brushed off yet again, I presented the doctor with the book. When he told me to stop worrying so much, even going to so far as to tell me I was a neurotic first-time mom, I looked him in the eye and said, “I am not crazy. I am not wrong to worry. He has autism.”

The doctor literally laughed at me. But I stood firm. I would not be swayed. This was my baby we were talking about. I pushed the book toward him. “Have a look. I’ve taken the liberty of highlighting all of his symptoms.” All but two were lit up with yellow strokes from the marker.

He did read it. Then he leaned back in his chair, watched Vic for about 20 seconds, and said, “He’s fine. You have nothing to worry about.” Really?

I told him I was, indeed, worried. I could, and happily would, explain away the signs if there were only a couple. Even five or six. But of a list of approximately 30 signs, he had about 28. There was no way I would even try to explain them all away. No doubt in my mind, that boy had autism. I was not going to be put off any longer.

To quell my fears, the doctor did refer us to an ENT and audiologist. I also requested an appointment with a pediatrician. Annoyed and sighing, the doctor made that referral as well. He kept telling me it would be a waste of time, but … if it would make me feel better, he’d do it.

I stopped at the reception desk to make sure the referrals were going to be sent in. I asked how long I would be waiting for these appointments. Oh, they take time. Great, I knew that. But how much time? Well, it depends on the specialist and how long a wait list they have. I don’t care about a wait list. I want to know how long we will be waiting to hear about an appointment. I can’t say for sure. Maybe a week or two. I gave her two weeks. If I didn’t hear from someone within two weeks, I would be camping out in her office until I had an appointment. Three days later, we received notice in the mail that he had upcoming appointments.

The next weeks were a blur of appointments. We saw the ENT, who did the initial testing of his hearing. I knew he didn’t have a hearing problem, but I also knew from my reading that she had to rule it out. I told her as much. She said she would never have brought up the word autism on her own, but since I mentioned it … oh yeah. She knew the minute he walked through her door.

Over the next days and weeks we had another hearing test, an appointment with the pediatrician, who unofficially confirmed my belief, and we were off to have diagnostic testing done for autism.

Memories of The Day are hazy. It took a few hours, at least it seemed that way. I know there were two of everyone: psychologists, occupational therapists, speech pathologists. We were in a separate room, watching through a two-way mirror, observing our baby “playing” with these strangers as they decided his fate. I knew what they would find, of course. I hadn’t really realized just how different he was from other kids his age. He didn’t play the way other children did. He didn’t build towers with blocks, didn’t move cars across the table top, had no clue what to do with a baby doll.

When it was over, they said he did well, and they would discuss his case and be in touch. The wait was agonizing. As it turns out, it wasn’t nearly as agonizing as the day the report arrived in the mail.

It is one thing to know, as a parent, that something is “wrong” with your child. You know, without a doubt, in your heart of hearts that something is not quite right. But actually seeing the proof in black and white right in front of you feels like a kick to the solar plexus with a steel-toed boot. I wanted to scream. I wanted to cry. I wanted my “perfect” baby back.

I did allow myself to cry that day. My mind raced with thoughts … How can I help him? Where do I get help? I don’t know if I can do this. I have to; he needs me. What will his life be like? Will he ever talk? Will he go to school? Will he ever go on a date, to the prom, get married, have children? Will he have to be institutionalized? Where do I start?

The early days are a blur. There is so much to learn all at once. So many acronyms to remember. So many people to deal with, whose names I needed to remember. The number of different interventions and techniques seemed limitless. I was already running on two hours of sleep a night. How could I do it? How do other parents do it?

The answer, quite simply, is to just do it. There is no easy way, no right or wrong way. You put one foot in front of the other and hope you don’t step on your own toes. It’s trial and error. It’s making mistakes and learning from them. It’s throwing everything you thought you knew about being a parent out the window and starting fresh. It’s learning a whole new world. Letting your child teach you how to teach him. As he guides you through his world, so you guide him through yours. You develop ways to communicate, to teach, to learn. You become his voice, his advocate, his protector. He becomes your teacher, your source of strength, your reason for being.

Fifteen years have now passed since that day his diagnosis was confirmed. We have been through a lot together: one marital separation, one failed relationship, five moves, three schools. He is now thriving in his current family environment with an amazing stepfather who loves him beyond measure. He even has three pets! He has fought hard to get to where he is today, has overcome obstacles that most people would never dream of. He is happy, loving, and resilient. I am so happy to have been through every step of this journey with him, to be his cheerleader, his advocate, and most of all, his mom.