While I don't keep Dovi's situation a state secret, I don't particularly relish telling the whole story to people who don't know anything about ASD (autism spectrum disorder). Inevitably their eyes open wide in horror and they make inane comments and ask really uncomfortable questions. Top honors go to: "Will he be able to get married?" "What caused it?" and "How did you notice that something was wrong?"
I'll address the first two questions later. For now I want to focus on the last question - because truth be told, when I meet a parent of a child with ASD that is often my first question too. (After "Where does he go to school? Is he verbal? Toilet trained?" Notice that I wrote "he"; the vast, vast majority of children with ASD, especially in the frum community, seem to be boys.)
Usually when those types of questioners start with their litany of queries, I sense an edge of panic in their voice. They are terrified that this dreaded 'thing' will hit their precious toddler. Most mothers of children with ASD (I shall heretofore shorten this as MOCHWA, Mothers of Children With Autism, so that it takes me less time to type up this long megillah), especially in my community, do not really talk about it, certainly not as openly as I do. So the symptoms are a rather murky topic, and every mother suddenly starts panicking that maybe their little tzaddik or tzadekes is not yet forming a full sentence at 18 months, and maybe she shouldn't have given those pesky immunizations, and what if.... and so forth.
Aside from curious noseybodies asking me 'how I noticed', I get a shocking amount of legitimate queries all the time. Two-and-a-half years ago when I started out, I had nobody to ask, nobody to turn to for support. I seemed to be the only mother in the community dealing with this situation. (More on that in a future post.) In the past year or so, the amount of toddlers getting diagnosed with ASD is skyrocketing. Nary a week goes by without someone or other contacting me with concerns about their toddler. It's a surreal feeling to be on this side of the fence - the one with experience, resources, and helpful advice. Just a short time ago, I was the one floundering in the stormy ocean without a life preserver.
So let me answer that burning question, just how I noticed that something was off with Dovi. I'll detail the evaluation process in a later post, but for now, I'll just describe the events leading up to the "AHA, MY CHILD NEEDS HELP" moment. If you're one of those worrywarts, hopefully this will either allay your fears, or start you on the early evaluation path, which may be a good thing for you.
In retrospect, I missed some of the warning signs. There were some bizarre incidents that did not stand out for me until after I received the diagnosis. That's when many puzzling situations became crystal clear, and I understood the reason for Dovi's often perplexing behavior leading up to the "UH OH" moment.
Let me backtrack and tell you a little about Dovi's background and early development.
Dovi was born full term at 38 weeks gestation. His birth was a difficult one, the details of which I'll share at another time. But he came into the world with a healthy scream, weighing a perfect 7 pounds 2 ounces. He started nursing 2 days later like a champ. He was perfect. And beautiful. (He still is!)
Dovi's older brother, whom I shall refer in this blog as Chaim, was a preemie. He came into the world with his mother screaming - he didn't. He had a reed, chicken-thin cry. He weighed 3 pounds, 11 ounces, and spent 2 weeks in the NICU. Chaim was delayed in his development, appropriate to his preterm birth. He rolled over at 6 months, sat up at 8, began crawling at 13 months, and walking at 19 months. The first two years of his life revolved around the schedule of his Early Intervention therapists. I really did not like it.
When Chaim finally began walking, his vocabularly exploded with it. In no time he had words, sentences, thoughts and conversations. More difficulties cropped up as he became a preschooler, which I will talk about later.
So when Dovi was born full term it was a massive relief. No more therapists, EI meetings, worries about development. We were in the clear! It was amazing! I was so grateful to HaShem for this 'second chance' at experiencing the delicious early development of an infant. The wonder that is the growth and maturing of a human being was just astonishing and delightful.
When Dovi began making eye contact and smiling at 6 weeks, instead of the 3 1/2 months it had taken Chaim, I was thrilled. Pretty soon, he was grasping toys at an age appropriate level. He rolled over at a surprisingly late 5 months, but sat at 6, crawled at 8, cruised the furniture at 10, and started walking at 13 months. He had imaginative play skills and appropriate reciprocal play skills. He started making early sounds, and soon was repeating words and labeling objects. It was all so exciting and fun and real.
(Those of you who know me from other online forums and have seen the documentary film I made of Dovi's development know what I'm talking about. He was just precious and adorable and precocious.)
I was going through a really hard time with Chaim at the time. He was having trouble in school, was disobeying at home and being extremely naggy, unhappy, and easily frustrated. (I will talk about this more at a later date). A lot of it was attributed to ongoing repercussions of prematurity. It was therefore such a relief that Dovi was such an easy child. He was always happy and smiling. He slept well, napped well, and ate well. He was obedient and just a pleasure to be around. At least Hashem blessed me with one easy, sweet child, I thought. I might be struggling with Chaim, but with Dovi it'll be easy street! I was looking forward to a much easier toddlerhood with Dovi, unlike the tough year I had with Chaim after he turned 2 years old.
When Dovid was about 16 or 17 months old, a niggling something began worrying me. His speech skills were lagging. For starters, he was barely using two-syllable words or combining consonants. Words like 'mommy', 'baby' etc were few and far in between; mostly he was using only the first syllable of every word. I was more anxious though that he never seemed to initiate speech. Sure, he replied to questions like "Where's Dovi's nose" by pointing to his nose, and would imitate me - "say mama!" 'mama'. Look, an egg! "Egg". Where's Dovi? "Dodo" and so forth. But if he needed me, he would not call me mama - he simply cried for attention. A lot of his speech was just memorized/rote speech, like counting from 1 - 10, saying abc's, reciting the first sound of every line of a song. But he was understanding me just fine, responding appropriately to commands, and making perfect eye contact and interacting well socially. I consulted with a friend who had several speech delayed toddlers who would not shut up once speech kicked in. She assured me that many kids develop speech a little later and I didn't need to worry yet, as long as he was communicating and comprehending language. I was still uneasy and kept a careful eye on him.
There were other worrisome things. At 17 months Dovi developed a habit of putting his hand down his diaper. Changing his diaper and bathtime started getting annoying. I know that some of you will roll your eyes and chalk it up to normal childhood curiosity, but it worried me; I didn't know how to get him to stop. To make things worse, he made strange grunting noises every time his hands went there. My mother was once on the phone with me when I was changing him and she was horrified, asking me what those noises were. Today, I know that he was stimming and it was a sensory thing; at the time I had absolutely no idea what it was. All I knew was that this was strange, no one I knew had such a problem with their toddler (yes, I asked around), and I didnt know how to fix it. As time went on, he started making those grunting noises often, looking at his fingers and picking at them. Today I know that this was his escape mechanism when life became overwhelming or confusing. He continued doing that for a very long time. By now his stimming has gone down by 90%, but it was really bad from about 19 months - 3 years.
When Dovi was about 19 months old, things started getting even stranger. He started running into the street, even when I repeatedly warned him that it was dangerous. I could no longer take him outdoors with me to wait for Chaim's schoolbus; I had to leave him in the front hallway in his stroller instead. He seemed to disregard many instructions; I walked with him one Shabbos afternoon to my mother's house, a distance of 7 minutes. It took over 20 minutes, as he kept trying to run into the street, run back up the street, defying my instructions. It was so frustrating and confusing, it brought me to tears.
Then the napping troubles began.
I don't believe in crying-it-out. And regular sleep training? Too hard for me. I can't handle crying babies - not someone else's baby, much less my own. I rock my babies to sleep, or put them to sleep with a bottle or nursing. I know, I know it's wrong. The repercussions are horrible; Chaim did not sleep through the night until he was almost four years old. (Dovi did start sleeping through at age 2 when I weaned him.) So I would nurse Dovi until he fell asleep. The problem was - he was no longer interested in napping. So I would rock and rock and nurse and nurse and when he finally drifted off I put him into his crib, and immediately he began screaming. SCREAMING. I would sigh, bite my lip, silence a scream, and nurse/rock some more. He was using me as a pacifier... but he was not falling asleep. I would start exploding from sheer impatience.
One afternoon when he was about 18 or 19 months old I finally had enough. I put him into his crib with an abundance of toys, put on some music, and stroked him soothingly. To my surprise, he didn't immediately jump up and start screaming his heart out. He began to play. So I left the room, happy that he had finally learned to love the crib. Maybe he would fall asleep?
He didn't.
For the next 3 hours I went in and out of his room to check up on him. He was content. He was staring up at the ceiling, poking his fingers in his eyes, and making those odd noises that I know today is stimming/grunting. He did not fall asleep. I gave up after 3 hours, puzzled at this odd transformation.
This phenomenon would repeat itself almost every day for the next few months. He didn't mind laying alone in his crib anymore, but he often would not fall asleep for hours. And he did not look for me! He didn't cry, call out for me - nothing. I was confused.
Often he would play on the floor, in his room, all on his own - he could lay there for over half an hour without looking for me. This was shocking, and a big change from the way he normally acted. He usually had major separation anxiety and hated not being in the same room as I was. Suddenly, he was content to be on his own. At first, I didn't mind it at all; I didn't think it was something to worry about, and as most busy mothers, was happy I could do my housework in peace and quiet. But as other symptoms began piling up, I started realizing that silence and isolation were not normal behavior for a developing toddler.
Then the inexplicable meltdowns started. Dovi would often wake up in the evening after an hour of sleep and be in a terrible, inconsolable state. He cried so hard, as if he was in agony. NOTHING helped. No amount of rocking, nursing, swaddling, singing, bottling helped. I was at a loss! This a 20 month old we're talking about. I would put him in a stroller and walk him up and down the house, hold him tight against me and rock him, try to get him unsuccessfully to nurse or take a bottle - but he just shrieked as if there was no tomorrow. All my pleading with him to tell me what was bothering him, to show me his boo-boo went nowhere. It was as if he could not hear me.
On Purim he had a terrible, awful meltdown. He had awoken for the day at 6 a.m. and I was exhausted. I insisted on putting him down for a nap, simply because I was desperate for a nap and couldn't get through the day without one. It took him a long time to fall asleep, and then he awoke after a short time - SHRIEKING. He was inconsolable. I couldn't put him down for one second; I had to get him into his Purim costume and walk him to my parents for the seudah but simply couldn't. He shrieked his guts out the entire way from my house to my parents. I held him part of the way, shrieking and screaming. He cried for 3 hours straight. I was at a loss.
Thank G-d, these meltdowns have mostly stopped by now, although it's still very difficult when he cries and seems to be in pain and can't tell me what's going on. At the time, I felt very frustrated that he couldn't express himself; I couldn't wait for him to start talking fully, so we could know what was going on.
But his speech was not increasing at all.
I recall telling my husband, when Dovi was abou 20 months old, that I was getting concerned that he was not doing anything new. Whatever little "chochmas" (cute baby things) he had, like waving bye bye, answering the phone, repeating cute words - were still there from 3 months ago. He didn't have any new words. When we went to my parents or in laws to visit, it was embarrassing to have nothing new to show off. As a matter of fact, if I was thinking about it, there was almost nothing to show off. His vocabulary seemed to be going in reverse instead of forward. Any new words he had tentatively gained - he had just started saying 'bus' and 'epizoos' (apple juice) had disappeared. More often than not, when I called his name he didn't even turn around. He was droopy and tired most of the time because of his lack of sleep. He was just not acting his age. With all of his preemie delays, Chaim was ahead of Dovi in development at 18 months - actively playing, actively babbling, exploring new sounds and words. What was going on here???
I found the courage to call the Early Intervention Agency I had used with Chaim and told them I was concerned that my son's speech development had stalled. They asked me if Dovi seemed to understand and respond to spoken language. I replied that he did; at that point he hadn't fully stopped interacting socially. Their response was to wait another month or two; if he was truly speech delayed there would be a more obvious gap in development and it would be easier to qualify for services.
So I waited.
Pesach night is when things finally came to a head.
I was at my parents' home for the seder, and it was clear to everyone that something was very wrong with Dovi. Instead of curiously looking around at the goings-on, smiling at the adults, and acting like a typical toddler, he spent the entire night unhappily moaning and bleating in his stroller, touching his fingers, toes, eyes, or ears and grunting all the way through. Today I know that the sights, sounds, and unfamiliar people were very overwhelming to him. Then, however, I felt strangely embarrassed and anxious at the way he was behaving. My 2 year old niece was communicating fully with her parents, calling them "Mommy" and "Daddy", asking for water, for a kiss for her booboo - I was taken aback. Dovi was acting like a 1 year old. He had clearly regressed.
I was very worried.
A day after Pesach I called up a local Early Intervention agency. I will refer to them on this blog as the Early Education Center, or EEC. It was time to get to the bottom of what was going on with my child.
I had no idea that my life was about to be turned upside down.
To Be Continued....
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