I’ll start by saying that I’m no expert on autism and that there are some really great resources out there – on the internet, in book stores, at seminars and colleges, etc. with insights and knowledge provided by experienced and credentialed professionals and documented studies. With 20-20 hindsight, I wish that I had known to investigate these sources a whole lot earlier in my son’s life. It would have saved us thousands of dollars, multitudes of questions, years of anguish…
In any case, I didn’t know any better, so when my previously loving 2-year-old son Gregory started ‘rejecting’ me and waking up screaming in terror/anger/frustration in the middle of the night, I was lost for an explanation. I tried to reach him, to calm him, but he shut me out; he wouldn’t let me touch him. I did what my mother-instinct told me to do…Night after night, I grabbed hold of him and held him firmly against me (fighting, screaming and kicking the whole time), talking quietly into his ear until eventually he ran out of steam and quieted. Of course, Greg couldn’t tell me what was wrong, and even when he eventually lay his tear-stained face back down on his pillow, he wouldn’t acknowledge me.
I cried myself to sleep too…my poor baby. We had never experienced anything like this with his older brother, Daniel. What was so wrong? What could I do for him? Why was he in so much pain?
Having just given birth to our third child, our lovely girl Sarah, I suspected that Gregory might be reacting to her arrival with jealousy. Perhaps he felt replaced or betrayed by my attention to this new loud, smelly ‘thing’. But if so, what could I do about it? So I started reading books about sibling rivalry.
First, we tried to make sure that Greg received lots of one-on-one attention – from both his parents. Then, I tried talking to him about the problem and trying to give him names for the feelings that he was experiencing – encouraging him to express himself. But he still wouldn’t or couldn’t say. Then, we tried to involve him in helping us care for his new baby sister, but he had absolutely no interest. To him, she didn’t exist: when he drew pictures of his family, it was always just Mom, Dad, Daniel and Gregory – no Sarah! When someone talked to him about Baby Sarah, he just turned and walked away.
And Greg became increasingly solitary, smiling rarely, interacting less. His body-language changed, to where he appeared very tense, with his shoulders hiked up to his earlobes, poised on his tip-toes, with his hands clenched tightly. If someone or thing surprised him (even with a slight touch on the shoulder), he reacted aggressively, as if trying to protect himself from attack. And that is indeed, how he appeared – as if he was about to be accosted at any time – always on high alert. It saddened me to see my little boy so tense and nervous, unable to relax – even in his sleep.
When those efforts proved ineffective, I spoke with the pediatrician. Now, don’t get me wrong, we LOVE our pediatrician, and one of the reasons for this is that he doesn’t over-react to nervous mother worries. So when I explained my concerns, the doctor reviewed Greg’s growth (which was off the charts in both height and weight ever since birth), performed the usual physical and developmental assessments and determined that it was ‘just a phase’ – “He’s doing fine.” I tried to be reassured by this knowledgeable professional’s words, but my instincts told me it was more than ‘just a phase’.
So, life went on, but Gregory was not ‘just fine’. We continued to struggle with our quirky boy, trying to mold his good behaviors and discipline his bad ones. I attempted play dates, in the vain hopes of helping him develop friendships. I signed him up for activities, hoping that Greg would ‘find himself’. I took him to a pediatric neurologist and was told, “No, he doesn’t have autism – He makes good eye contact. He has Tourette’s Syndrome.” We even had him wear orthotic boots to bed at night for two years, on the recommendation of an orthopedic physician, to cure the presumed tight tendons that were causing him to toe-walk years past the toddler stage. While all well-intentioned, none of it worked. Gregory continued to be an unhappy, tense, withdrawn boy.
Once Greg hit Kindergarten, all hell broke loose. Our older son, Daniel, had transitioned well into elementary school. And the PreK teachers had said that Gregory was ready for Kindergarten, so we were totally blind-sided when things went so wrong right from the start. On the second day of Kindergarten, I received a phone call from the teacher that Greg had been sent to the principal….WHAT???? I had NEVER been sent to the principal in my entire life! My little guy didn’t even know that being sent to the principal was a bad thing! What was going on??? Unfortunately, it went downhill from there…
In hindsight, it was not just Gregory’s behaviors that were at fault. The teacher didn’t handle things as well as she might have either, and being the professional, I believe the greater responsibility lay with her. In any case, the two of them did not mesh well at all, and it became a very rocky relationship, to the point where Greg didn’t want to go to school anymore. His verbal and motor tics increased dramatically in response to the stress. He felt his teacher’s disapproval, our disappointment, and his own frustration at being unable to do things ‘right’. It was a daily struggle, with weekly meetings, and ‘talks’ with Gregory. Luckily for him, his teacher went out on maternity leave in January and he and the new teacher got along much better. I don’t know what specifically changed, but the new, young teacher must have just ‘got’ Greg and accepted him in all his quirky behaviors. He still had melt-downs at school from time to time, but overall, he did much better and we were relieved that he might be moving out of that ‘stage’.
First and Second grades progressed slightly better, primarily because the teachers were wonderfully accepting of Gregory’s odd behaviors and needs. The first half of each school year was fraught with melt-downs and running-away episodes, but by January, Greg would settle in and be more comfortable for the rest of the school year. And we would think, yeah! He might be moving out of that ‘stage’… until the next school year began and the cycle repeated itself.
In Third Grade, the year started off with the usual poor transition, with melt-down episodes of hiding under desks, running away from school, tearing up school work, and disappearing into stairwells. Gregory was a desperately unhappy child, saying that “No one understands me.” And “I’m not like other kids.” His tics were rampant, he was barely sleeping at night and he was always by himself. I knew that something had to be done, but still didn’t know in which direction to turn. This time, I made an appointment with the Head of Pediatric Development at St. Joseph’s Children’s Hospital…I couldn’t get the appointment for another 6 months, but I needed to do something and didn’t know where else to go.
And then, the ‘Date Night Epiphany’ happened. For a number of years, my husband and I would schedule Date Nights every few weeks, for just the two of us to go out together and talk. (This has served us well throughout the years – I highly recommend it!) In any case, that particular night, Barry had to take a lengthy phone call from his boss in the middle of our Date Night, just as we were finishing dinner. Knowing how much I love book stores, he knew that I could happily browse for hours and therefore not get annoyed by the interrupted Date Night, freeing him to take the call without guilt.
So, to Barnes and Noble we went, where I was drawn to the section on Mental Health, still trying to put my finger on Gregory’s strange set of issues. Bi-Polar – no; ADHD – no; Oppositional-Defiant Disorder – no. And then the epiphany: I picked up the next book on the shelf – Tony Attwood’s The Complete Guide to Asperger’s Syndrome. Although I had a vague notion of what autism was, I had only heard the term Asperger’s Syndrome a few times and had no clue what it was. So I turned to the page listing AS symptoms – and there he was, in all his quirky glory!!!! I couldn’t believe my eyes…out of the 20 symptoms listed, Gregory matched up with almost all of them. I was overjoyed – not that he had AS, but that now I had a direction to go….understanding and hopefully treatment was finally on its way! I grabbed every book I could find on the subject and virtually ran to find Barry (having just completed his phone call, luckily) to present him with the joyous news! Our son has Aspergers!!!
All that Friday night and the rest of the weekend, I read…and read….and read. Light bulbs were going off in my head constantly as Gregory’s behaviors started to fall into place and make sense. I hugged him and told him how much I loved him – for the first time with an understanding of all that he had been struggling with. My brave boy had tackled so much on his own, trying his best to cope in his own way, to circumstances and situations that were so difficult for him…Sometimes sadly, even when the well-meaning actions of his parents and teachers exacerbated the problems for him.
But now, things would be different. I knew what we were dealing with and I was ready to educate myself about my ‘opponent’. I still went ahead and eventually visited with a Pediatric Neurologist for an official, unbiased medical diagnosis, but I was already convinced that this was it. Time to strap on the armor…. Look out world – I’m a Mama with a Mission!
 Tony Attwood, The Complete Guide to Asperger’s Syndrome (Jessica Kingsley Publishers, 2007).