Connecting with other families that have gone before you may help you on your journey.
Before I had children, I was what you might call a “career woman”. I loved working, loved competition, and loved problem solving. After my husband and I had been married for a year, we decided to take the leap and try to have kids. At this point, my idea of child rearing was this: Have a baby. Feed it and change its diapers. Buy it some nice, trendy school clothes with a good backpack. Walk it to the bus stop. Help it find a good college, and wish it luck. Pretty easy stuff, or so I thought.
During my pregnancy, I took very good care of myself. I quit caffeine, didn’t drink or smoke, and ate healthy foods. I was diagnosed with gestational diabetes around week 25, but controlled it without insulin or medication. At 40 weeks, I began various inducing techniques, but nothing worked. Finally, after 42 weeks of gestation and 26 hours of labor, I gave birth to my son Drew. He was a strange, wrinkly creature, but I fell in love instantly.
Drew was a great baby. He rarely cried, ate well, and slept a good amount. He crawled for only a week before he started walking at 11 months, and was saying words at 9 months old. He preferred his bouncy seat to being held, but I didn’t give it much thought. As long as he napped, the world was good.
By the age of 15 months, he had over 500 words in his vocabulary. The women in my playgroups were amazed, and I couldn’t help but think “that’s right. My baby is a genius.” But as he approached his 18 month milestone, some very distinct differences came to light.
My husband and I both noticed that Drew rarely looked us in the eyes when we were speaking to him. Even when we tried to physically encourage him to look at us, he would turn away. And when he would play in the yard, he wouldn’t run and chase like other kids his age. Instead, he would find rocks, pieces of bark, toy cars, anything he could get his hands on, and line them up in a row. That’s all he wanted to do. Line objects up in very long, straight rows. At the time, I thought that maybe that’s how future genius engineers played, and didn’t think too much of it. But the differences began to slowly add up. And we began to wonder if there was more to Drew than we realized.
Eighteen months after Drew came into the world, his little brother Sean was born. For the first year and a half of Sean’s life, Drew would just stare at him, like he was an annoyingly loud piece of furniture. He didn’t attempt to interact with him at all. He just stared at him curiously. It wasn’t until Sean could talk and get around on his own that Drew decided to engage with him from time to time. Growing up an only child myself, I had no clue if this was normal or not, but I still didn’t think there was anything wrong enough to seek an evaluation or help. I just had a genius child with idiosyncrasies.
When Drew was 2, he loved watching “Little Einsteins”, an educational cartoon about music and art. Within days, he could name all the instruments in an orchestra, categorizing them by woodwind, brass, strings and percussion. He remembered the names of the artists, and was able to identify paintings outside of the show. His memory was incredible! Even with books I read to him, he would look at the page and remember everything. When he became interested in space, overnight he knew not only the names of the planets, moons and comets but understood and recited the life cycle of a star perfectly. And, shortly after Drew turned 3, we discovered he could read. Not just a word here and there, but whole sentences. By watching me read to him at bedtime, he had silently taught himself to read. We were stunned.
Soon after we discovered Drew’s new reading ability, we moved from Wisconsin to Oklahoma for my husband’s job. And, being an at home Mom that longed for some adult, personal freedom, I enrolled him in a church preschool 4 blocks away. I was very impressed with them, and felt confident Drew would have a good experience. So you can imagine how shocked I was to receive a call from the Administrator one day 6 weeks later, saying that my son had managed to find an unlocked door in the gymnasium that led to the parking lot, escaped unnoticed, and crossed a busy street by himself trying to get home. When he was found 20 minutes later by school staff and asked why he had left the school, he very matter of factly replied “I was going home to my Mommy”. That’s when the “I have to find out what’s going on” light went off in my head. And that began the long and complicated journey of specialists, confusion, and fear.
My husband and I decided we would have him tested for admittance to the talented and gifted private school in our new city. Maybe he was just bored in school. But as we walked into the tester/psychologist’s office, Drew began screaming, not at her, but at the smell of a candle she had lit. He ran from the room, saying he couldn’t stand the awful smell, and would not go back in. We came back the next week, and with the candle gone, he was able to do some testing. After three sessions, we got the results. At almost four years old, Drew tested at a 4th grade level for reading and basic achievement skills. He refused to pick up a writing utensil however, so that portion of the test could not be assessed. We were told that, while he qualified for the TAG school IQ wise, she recommended he would not be a good fit at that time because of his lack of fine motor skills and behavior issues (he had a lot of anxiety even then). She then dug out a binder she had received at a recent psychology conference and began telling us that she suspected Drew had something called “Aspergers Syndrome”, a form of high functioning autism. Really? Someone was going to tell us our child had autism based on attending a two-day workshop and looking through a binder? We were not accepting that. My husband and I considered ourselves intelligent, informed, logical people, and that just seemed too off the cuff. But we did accept that we needed more answers.
The next stop was another Child Psychologist, who worked with special needs kids. After three sessions with him, he said he could not put a finger on what was going on with Drew and advised us to go to another therapist that could better address our needs. Not that we knew what those needs were. I was frustrated, confused and downright angry. All I wanted to do was help my son. And I didn’t know which way to go, or how to get there.
Through word of mouth, I learned of a clinic that worked with special needs kids. It had a Psychiatrist, Psychologist and Occupational Therapist, all connected to each other. I immediately got Drew in and through the initial OT evaluation, I learned that Drew had “Sensory Processing Disorder” and “PDD”, which meant his motor skills were developmentally behind for his age, and he had extreme, abnormal sensitivities to textures, sounds, and light. This part didn’t surprise me because Drew was a picky eater, only wore certain fabrics, had to have all the tags cut out of his clothes, and wouldn’t go outside if the sun was too bright. The PDD diagnoses was more of a surprise, because I had always been told by regular Pediatricians that “boys are always behind girls” in fine motor skills like writing, and I shouldn’t worry about it. In fact, one of the first Pediatricians we went to in our new city told me that Drew “was just being a boy” and he would “work it out” just fine. Now I was hearing that he was developmentally delayed to the point of getting a diagnosis? At least, I thought, I’m getting a direction to go in. I tried not to get obsessed with the actual diagnoses and instead focused on the therapy techniques he was learning to help him develop.
After one year of OT, Drew tested within the normal range for sensory processing and fine motor skills for his age group! Great, I thought! So whatever he has is curable if we just work on it. Not quite. I was soon to learn that, like a game of Whack-A-Mole, when one challenge seemed conquered, another one popped up. During this time frame, his auditory “triggers” that would send him into violent meltdowns became more numerous. When he was 3, if he heard the words “ready…set…GO!” he would scream and lash out at whoever was nearby. Eventually, he became desensitized to this phrase, but other phrases took its place. The words “all aboard” and anything that had to do with “happy birthday” were like napalm to him. He would get violently angry if he heard even a few notes of the “Happy Birthday” song, and a picture of a cake with candles would send him running away screaming. We don’t know how those started, but he still has those specific triggers today.
The Psychiatrist in the clinic began a sort of “desensitization therapy” with Drew, exposing him to little bits of his triggers each session. His anxiety only seemed to increase, not only at his triggers, but at everything unknown. He stopped being able to handle going to the zoo because it had a “zoo train”, and where there were trains, there were the words “all aboard”. Birthdays in our house went away, and the invitations to birthday parties went unanswered. The therapy seemed to only make things worse. The breaking point finally came when I was sitting in on a session with Drew and his Psychiatrist, and when Drew refused to obey an order, the doctor grabbed him in a bear hug and held him on the ground. Drew did not like to be hugged, let alone touched, and he cried out for me to save him. This was a very difficult moment for me. On one hand, my child was screaming for help and I needed to get him away from that grip immediately. But on the other hand, this was a trained specialist who surely knew more about meltdowns and defiance than me. If I pulled Drew away, would that unravel all the therapy the Psychiatrist had built up? I was so confused. After 15 seconds of consideration, I pulled him away, saying that if he wanted Drew to obey him, he could give him a time out or some other form of discipline. At that, he told us he could no longer treat Drew and asked us to leave his practice. Crushed, confused and disheartened, we broke ties with the clinic. I was back at square one, and I still didn’t know what was going on with my son. I was however, slowly learning what didn’t help.
Through sheer luck, we were referred by a friend to a Developmental Pediatrician down town. There was only one other in the city and he had a two-year waiting list for new patients that we had been on for almost that long. The Developmental Pediatrician we saw gave Drew the ADOS test, which was a test for autism. And finally as he read the results that Drew tested positive for Aspergers Syndrome, I felt that we had our answer. I just didn’t see enough of the signs when the initial TAG school tester suggested that same diagnoses when he was 4, but after all we had been through, and all the research I had done, I knew this guy was right. And when he began to explain the diagnoses to me in detail, the questions in my head started to answer themselves.
I took this information and applied for Drew to attend a local private school for kids with Aspergers, ADHD and Dyslexia. He had attended public school for the first 7 weeks of the school year, and because of his anxiety and auditory triggers (I mean really, how was he NOT going to hear anything about trains or birthdays in first grade!), his days were hard. If he heard the words “all aboard” or the “abc song” (which was a very inconvenient trigger), he would physically lash out at whoever said it, sending him to the Principal’s office. It didn’t take long for other kids to put two and two together with what set Drew off, and from then on, every day turned into an anxiety filled horror show. Until Drew could get proper documentation that would allow him options, he would spend entire days sitting on the floor in the Principal’s office, staring at the wall. Finally, Drew’s “504 plan”, which was an official school document that gave Drew special privileges to meet his needs, was ready. Now, if the class sang “happy birthday” to another student, Drew could leave the classroom and go to the Special Ed room. At least he wouldn’t stare at the wall all day, I thought to myself. I was told that the next step in “the process” would be establishing something called an IEP, which was essentially a 504 with more permanence. To get an IEP together would take another 6-8 weeks. I pictured my 6 year old son spending hours and hours every day sitting in the special education room with his genius IQ, bored, sad and anxious. I just couldn’t do it, so the next day I pulled him out of school. I didn’t know that I had rights as a special needs parent that would help me get what my son needed to succeed. I just knew that this was not the place for my Drew.
The thought of enrolling Drew in a private school custom made for him was beyond exciting! I imagined him going to school with a big smile on his face, happy to be in a setting that made him feel comfortable. This school had every possible therapy service available onsite as part of the daily curriculum. Occupational Therapists, Speech Therapists, you name it they had it. This was going to work, I thought. And at first, it did. Drew didn’t hate going to school, and some days he actually enjoyed it. But then came the dreaded day when someone in the lunch room said one of Drew’s “trigger” phrases, and overnight the school became a place of anxiety and uncertainty. Because Drew was always on the lookout for auditory trouble, his behavior at school grew worse. After only 5 weeks, Drew hit a child in the lunchroom. I got a call from the principal, who said “It’s school policy that if a child hurts another child physically, they are sent home, no exceptions”. OH NO, I thought. Drew has found a loophole and now has a way out of school. I asked the principal if there was another way to discipline him, because if he learned he could be sent home every time he hit someone, he would do it until he got expelled. But my pleas fell on deaf ears. Policy was policy. Within 2 weeks, Drew had been suspended twice for hitting kids. The breaking point came when I was called on my cell phone literally 10 minutes after I dropped him off for school asking me to come pick him up because he hit a child. I resigned to the fact that the battle was over, and Drew had won. I pulled him out that same day to avoid the inevitable.
I had hit a new low. My son, who by now was reading at an 8th grade level, would not stay in school. I had tried every educational avenue I could think of, and come up empty in every way. It was at this point I decided to homeschool him through a virtual, online school. And, even though it was a daily struggle to get him to complete any work, we managed to get through first grade. I would have break downs and crying fits behind closed doors because I was so exhausted mentally. Although I had one specialist that I trusted, I needed more help. The two support groups for parents of kids with Aspergers were not helpful to me, and I didn’t know anyone with special needs kids. I felt alone, helpless, and at times, hopeless.
At the end of that summer, my husband’s division was outsourced and he decided to take a job in Oregon. Since I was homeschooling, Oregon seemed like as good a place as any. Two months later we were living in Central Oregon, and I was yet again at square one. Thankfully, since I had done so much research online and been through so many situations, I had a good idea of what Drew needed. Thankfully, we found a clinic that did amazing work with special needs kids. They provided a doctor, counselor, behavior specialist, and nurse practitioner that all worked together to help a child succeed. Drew is now 7, and after attending this clinic twice a week for almost a year, he is doing extremely well. I had finally found the right place for us. I was home.
By pure fate, I later fell into the position of Autism Society of Oregon’s Central Oregon Chapter Representative. Although I still homeschooled, I could finally put what I had learned over the past several years to good use helping other families affected by autism through email, internet and phone. Today I am working on bringing support services to my area, so other scared, frustrated parents like I was could have help. And for that, I am truly grateful.
My experience is just that; my experience. Just like every child with autism is different, every parent’s experience with it is different. What worked for me may not work for you. And, you may find great success for your child in an approach that didn’t work for Drew. The most important thing about this journey in my opinion is having support. I have faced isolation, depression, and hopelessness, and I don’t want other parents to go through that ever. If your child is diagnosed as having “Autism Spectrum Disorder”, don’t panic. Children with autism have amazing gifts and abilities, and in today’s society can have a productive, bright future. Take everything one step at a time. Remember that, while there will surely be pitfalls, there will also be others to help you up and support you. And never forget…you are not alone.
Proud Mother of the Amazing Drew