In the Beginning

Lately I have been asked the same question repeatedly: "How did you know something was wrong with your son?"

Perhaps it is because this blog has made me more willing to discuss candidly our family situation with perfect strangers. Of course, these are usually strangers who are beginning their own journey through the autism maze, and I always feel the need to help them avoid some of the obstacles we encountered. Other times it is asked by friends or acquaintances who wonder how we have survived thus far. Whichever case it may be, I always find this to be a very difficult question to answer.

It is painful to answer because that mother instinct in me knew within the first week of Ian's life that something wasn't right. I could not ascertain exactly what was wrong, nor could I describe it to his pediatrician. It was a terrible feeling in the pit of my stomach that never seemed to go away - more than just new parent jitters. My baby was uncomfortable for some unknown reason, and I couldn't make him better.

The answer is also complex. There were so many signs early on, but we did not realize they were indicators of a problem. Ian had chronic ear infections starting at 10 weeks of age until he was almost 3 years old. We assumed his speech was hard to understand because he could not hear. Surprisingly, that was not the case. His hearing was fine. After he turned 2 and he became withdrawn, we assumed it was because we moved to a new state and he was quietly adjusting to his new surroundings. Yet, I knew such a dramatic personality change was not caused by our move, and it threw up a red flag. His eating habits changed almost over night. He began limiting what he was willing to eat to mostly dairy products, Goldfish, and graham crackers. His tolerance for loud noises, bright lights, and crowds diminished quickly. By the time he was 2 1/2, I could no longer take him to the grocery store, as he would have a complete meltdown within 10 minutes of entering the store. All of these changes told me my instinct was right.

As Ian's temperament became increasingly perplexing, I relied on a terrific neighbor to guide me as I sought answers. A life-long resident of the community with 3 young sons of her own, Cindy helped me find resources and answers. I saw how her boys interacted with each other and with other kids. Ian was not on the same plane as they were. Sometimes, he wasn't even on the same planet! Friends, family, and doctors told me not to compare Ian to other kids his own age, because "every child is different". Well, duh!

"Every kid is not this different," I would retort. Most people did not understand. But Cindy did. She acknowledge my anguish like only another mother could, and validated it by helping me find resources to head us in the right direction. Cindy and my parents were willing to agree with me that there was something wrong that needed to be addressed. No sugar coating, no lies to make me feel better. It was a relief to know I wasn't insane.

Slowly I began to see behaviors that to me were clearly autism. Ian would spin for minutes at a time and not get dizzy. He would crash into appliances, walls, hard objects, or people repeatedly and seem unscathed. He would zone out and be impossible to pull back to reality. He began to interact with us only on his terms, and we did not understand his terms. Punishment for unacceptable behaviors did not change his motivation. He seemed oblivious to danger. I was terrified to leave him alone for even a second.

We took Ian for a private speech evaluation because the school district we were in said he did not qualify for speech therapy by their guidelines. Ian could not sit still for the testing. He was argumentative and just plain odd. Without getting specific, the therapist told us that Ian was a complex child. She recommended we see a neurologist. She also gave us the diagnoses we needed for him to receive speech therapy through the school system. After that, things began to roll quickly.

Almost immediately, the school's speech therapist recognized Ian had other issues. The occupational therapist was brought in to evaluate him further. She determined he had sensory integration dysfunction. She gave me tons of information to read about it. From those documents I became convinced that Ian had other diagnoses waiting to be discovered.

Just before Ian's 4th birthday, one of my dearest friends of over 20 years came for a visit. The last time we saw each other was just before I got pregnant with Ian. Now I had two kids for her to meet and a lot of catching up to do. Karin was, at the time, an elementary school teacher. We had talked before her arrival about my concerns. She and Ian hit it off immediately. They spent a great deal of time together over the next few days, and Ian thought she was really cool.

The night before Karin left, she wrote "Asperger's Syndrome" on a piece of paper and told me to research it. She had seen it many times before in her classroom and was fairly confident that Ian had it too.

When I read the DSM-III-R definition of Asperger Syndrome, I did not see my child. My blinders suddenly went up. Reality had slapped me in the face and I ran for cover in denial. It took a couple of weeks for it to sink in, but finally I admitted that Karin had hit the mark. I made an appointment with a pediatric neurologist, and we waited 5 months for the date to arrive when we would finally have an answer.

From the time I saw documentable changes in Ian until we had a piece of paper with a doctor's signature next to a diagnosis was just over 2 years. Although at the time it was frustrating to wait so long, not knowing for certain what it was that made my child different from others, I am grateful now for that time. If we had learned immediately that our son had autism, we might have decided against having another child. Our lives are richer because we are four. Ainsley has been good for all of us, but especially for Ian.

The other day at the pool, Ian and Ainsley got into their floaties (hers is a turtle, his is a crab), and they swam across the pool holding hands. Every parent watched them and noticed how special the bond is between them. They are best friends.

In the beginning, I was terrified, frustrated, sad, bewildered. Now I am relieved. Our life is different. It is often very difficult. But today my son blessed me with a smile as he told me that he is happy and proud of who he is. We must be on the right track.