I was no stranger to Autism Spectrum Disorder. As a matter of fact, I had just finished recovering from my close brush with this very scary monster.
As mentioned earlier, Dovi's older brother Chaim was a preemie, and had OT and PT until he was discharged at age 2, having fully caught up with his milestones. I thought we were home free forevermore.
When Chaim turned 2.3, I started the arduous task of toilet training him. Yes, I know it's a bit on the early side, but I was anxious to get started so he could go to preschool before Pesach so I could clean uninterrupted. My friends and siblings toilet trained their 2+ year olds in about two weeks; they said that on occasion with a really stubborn child it could take six weeks.
After six weeks, I threw in the towel. More accurately, I threw the towel on the floor to wipe up accident #999, screamed, and pulled my hair out.
I simply could not toilet train this child!
I tried everything: charts, bribes, three different potties, ignoring accidents, petch, calling Bubby, talking nicely, stickers - you name it. It just didn't work. It was as if everything went in one ear and out the other. He went in the potty, got praised, cheered and was proud of himself, and five minutes later, he had an accident on the floor. It just wasn't working.
So I took a break for 3 months. I realized he was probably not ready cognitively, and I put him in playgroup for 2 months so I could clean for Pesach. In the playgroup I got my first whiff that something wasn't all that right with Chaim. The playgroup teachers complained that he was impossible; he terrorized the other kids, didn't obey any directives, didn't play appropriately with any of the other kids, and spilled things all day. They could not deal with him, but they did me a favor because I begged them to keep him until Pesach; I had no other choice. At 2.8, he was the oldest child in the playgroup - at that age, kids usually transition to preschool.
When Chaim was 2.9, I took another stab at toilet training. After 7 weeks, he was still only half trained. At that time, there were no playgroups for boys who were still in diapers. Today, there are a few; back then I remember briefly contemplating if I could send him to the Early Education Center, the only special ed school in my neighborhood, instead of regular preschool because I couldn't toilet train him! (In retrospect it wouldn't have been a bad idea, but since this was my oldest child whom I couldn't wait to send to a regular preschool, and he was a neurotypical child, it made little sense.) I took a deep breath and enrolled him in regular preschool anyway, with a prayer on my lips that he shouldn't be tossed out for having accidents daily. I was 8 months pregnant with Dovi, Chaim was a few weeks away from his upsherin, and I had no choice anymore. Fortunately, his Rebbe was fully understanding and cooperated with me. But as soon as he started preschool, I started wondering what was wrong with my child; his behavior was deplorable. The Rebbe told me that he ran away from the classroom, sat on kids' heads, spilled food, didn't seem to hear or understand anything that was said to him, and didn't seem to have the slightest understanding of what was happening around him. My heart sank.
For months I had been hearing from various relative that I was doing a terrible job parenting Chaim. I admitted that he was spoiled; I have a very hard time setting limits for my children (I still do), and Chaim was born after a decade of prayers and tears, so it was understandable that I doted on him and hated saying "no" to him. Now it turned out that this was a terrible mistake. His Rebbe, who was not blessed with children yet at the time himself (he recently had twins after 14 years of marriage!!!) fully understood why he was so spoiled, and he really tried to improve Chaim's behavior. But 3 weeks into the school session, Chaim had his first #2 accident, and I was called to come down to school to change him. There I met Chaim's other Rebbe - who was not as understanding as the first one - who told me in clipped tones that Chaim "needs a lot of help and would do better in a smaller school." I was shocked and didn't quite understand what he meant. He suggested that Chaim be evaluated for therapy, because his behavior and cognition were abnormal for his age.
I came home from school in a turmoil. How was this possible? Chaim was a smart cookie, a puzzle whiz, was fully verbal and understood everything that was said to him. He could sing many songs, have funny conversations, and... yes, he was Mister Destructo who had no regard for other people and their property. But if his Rebbe suggested he be evaluated, I put the wheels in motion.
The woman in charge of evaluations at the school asked me to describe Chaim's behavior. When she heard that he liked to repeat what was said to him instead of replying with his own words (for instance: "Chaim, you had a good day at school?" he'd reply with, "Chaim had a good day in school!" instead of saying "yes"), she drew a sharp intake of breath and told me it was a red flag for autism. I was terribly frightened and went online to look up symptoms of autism. What I read scared me even further; Chaim fit a lot of the description. My sister insisted that he was just spoiled and had no limits which made him behave this way, but I was still scared.
So I applied for an evaluation with the Board of Ed, but things screeched to a halt when Dovi was born a week later. Life was topsy turvy for a while; I was very sick after his birth and it took me months to recover. Chaim's Rebbes kept calling me, asking me when he would start therapy, because he was out of control. With a new baby in the house - whom Chaim would sit on and throw things at regularly - and with me being out of commission and in fragile health, he was regressing in his half-hearted toilet training, acting out even worse, and in short, impossible. I quickly took action and found that the Board of Ed had never received my application. So I marched down personally to our local community organization where I met Marlene, the district administrator, who listened to my concerns very warmly. Within minutes she was on the phone with EvalCenter and scheduled a preliminary eval. Wheels started rolling, and pretty soon Chaim had a social eval, psychological, speech, and OT. Thankfully, he was not considered on the autism spectrum; he had pretty severe receptive and expressive language delays which they chalked up a lot to his preterm birth. Marlene took one look at his reports and in her legendary generous fashion, awarded us with 15 hours of SEIT weekly, 2X30 speech, and 2X45 OT.
By then, Chaim was 3.3 years old. The situation at home was tough. He had an extremely low frustration tolerance, a complete disregard for instruction, and needed attention 24/7. He would wake up Dovi with his loud voice, completely disregard my repeated entreaties to play quietly in the other room while I rocked Dovi to sleep, and continued making senseless messes for no reason.
I was extremely lucky and blessed that a top notch, highly sought-after SEIT became available in his preschool just as he got his IEP. He completely changed our lives. At first, he also suspected that Chaim had Autism Spectrum Disorder; his behavior totally fit the parameters. But after he discovered that Chaim was spoiled and had few limits at home he knew he would be able to work with Chaim and help him. Within a month or two of his regular sessions with the SEIT, Chaim slowly began changing. His vocabulary became rich and expressive; his wild and untamed behavior in class lessened; he became a pleasure to be around. He continued getting SEIT until he aged out of CPSE, and by then he was a totally transformed child.
Suddenly, my guilt and torment over the torture that was toilet training dissipated. So it NOT been my fault! It hadn't been Chaim's fault either. His language delays meant that he totally had not processed anything I said to him. He listened, agreed, nodded, clapped at his triumphs, and 2 minutes later, forgot what we had just been doing. Neither of us were to blame, and it was completely fixable. It took another short while, but he was basically accident free by the time he was 3 1/2.
When he started therapy I was asked to take him to a neurologist for an additional diagnosis. I hesitated, because I really did not want him labeled, especially if the label was not true. I braced myself to hear that he had PDD-NOS, but to my surprise the neurologist did not think he did. He was able to complete all of the testing materials with flying colors and didn't fit most of the criteria of PDD-NOS. It was such a relief.
Chaim is still a work in progress. While he definitely isn't on the spectrum, he was pretty much just outside the fence looking in, and we were fortunate that his biggest issues were cleared up relatively quickly. He is the sharpest kid I have ever met; he grasps topic beyond his age of understanding, and has a bilingual vocabulary that make adults keel over. He still needs some social skills training and Occupational Therapy, because he still has some behavior and sensory issues; he has ADHD-like tendencies rather than ASD-like tendencies. But that first year of preschool had been such a struggle, as well as a battle with the agency providing the SEIT, as they wanted him in their center-based ABA program rather than sending the SEIT to his school, which I flat out refused. (More on that later.) It had been such a relief to put that scary term AUTISM SPECTRUM DISORDER into a neatly marked box never to be looked at again.
And here I was, the scabs barely dry and the scars hardly healed - and I was facing this awful monster again. Dovi was exhibiting very similar symptoms - shrouded in his own mysterious world, barely comprehending the spoken word and isolating himself from other humans - at a younger age, in a more severe manner. The fact that he had clearly regressed in age-appropriate skills was a warning bell clanging so loudly I was going deaf.
Would I have to dust off that dreaded, heavy box from the high shelf in the storage shed of Unpleasant Life Experiences once more? Could I handle going through this again? The psychologist's visit loomed over me, ominous and frightening. Cue eerie music score.
To be continued...