Finding wisdom

For 5 years, I could not understand my son. He was such a unique person from the very beginning, a child who struck everyone as special - not just us parents and his grandparents. He was special like all babies are special but he was a little extra special in ways no one could quite put their finger on. He stared at you with eyes that seemed to go right through you. He certainly penetrated our hearts.

The signs were there but were subtle enough that pediatricians and, later, psychologists didn't pick up on them. We took things that he did for granted, not realizing that these idiosyncrasies were hints of what made him so special. He woudn't breastfeed. He'd pull away and fight me even as a newborn when I tried to bring him to me. I thought I didn't know what I was doing. He would let us hold him but he mostly preferred to sit in his bouncy seat. He often slept there as well.

He cried for hours at night and was finally (after many doctor appointments and a change in pediatrians) diagnosed with reflux. He was covered in eczema and itched all over.* He would freak out when he saw flashing lights - it distressed him immensely.

As he got older, new things would crop up: he hated getting his teeth brushed. The pediatrician told us that we should hold him down to brush his teeth. After a week, he said, he'll stop fighting you. He didn't.

He made the tantrums of other children seem mild and amusing. Certain sounds terrified him. I never vacuumed the house when he was home. We stopped using timers/alarms because he'd react so badly to them that it seemed cruel to continue using them.

He'd hit and kick doctors when they tried to examine him. I'd tell them he was scared and they thought I was coddling him. They suggested I was making him "this way." Early on, we sought professional help. The psychologists just said he was a smart kid with some anxiety.

He knew his ABCs at 18 months, was counting to 100 before he was 2 years old. He could read by 3 and knew the names and locations of all 50 states. He recognized within a few seconds of a song whether it was by Mozart, Vivaldi, Beethoven by the time he was 2. He was special.

It took years. Years of wondering what we were doing wrong. Years of trying to explain our child to people confused by him and questioning us. Eventually, our extended family began to suggest we have him evaluated again. We did. We went to someone who was a well respected psychiatrist at a nearby university who had treated children with many, many conditions, including autism and, specifically, Aspergers.

The psychiatrist was confident that our son had Aspergers, that he had high functioning autism. He said he would bet his house on it, that he was classic - he fit almost all of the criteria. Our life changed yet again. From not knowing anything at all to having a diagnosis we then shifted to the next stage of needing to learn as much as we could about Asperger's.

Meanwhile, his behavior was becoming more difficult. He resisted school as if each day was the first day of school and many times I had to pry his arms or legs off of me so I could leave. Parents often dread the first day of school for their kids, and I dreaded every school day. We faced the painful separation each time because he needed it and we needed it but it never was easy.

Dealing with a diagnosis such as autism is multifaceted and multilayered. Everyone in the family has their own grief to process and that grief changes from moment to moment. At first, we were immensely relieved because we finally had answers. Next, and it continues to this day, we had to accept that this is incurable and we may only be lucky to modify some of his behaviors so that he'll be able to function as an independent and happy individual. His future is so uncertain and has so many scary possibilities that I can barely focus on it. In order to survive, I have to focus on now, focus on the issues that I can work on now and hope all this work will lead to a good future for my son.

My son is dear to me. He'd have to be. When he's having a difficult time, he says mean things to me. He has bitten, slapped, hit, and kicked me yet I love him and tirelessly work to help him adjust to the neurotypical world. He is still the baby I held in the hospital and sang softly to. He's still the baby whose hair shown golden in the sun as I watched. He is so brilliant yet is so confused about this weird world he fell in to and all I want is to help translate it for him and for him to know that his mom and dad will move mountains to help him. At times, we may be frustrated with him and with our life but we refuse to give up. When times are at the hardest, we make ourselves pause and dig down very deeply into our souls and grasp that divine wisdom and strength in our hearts, filling us with the hope that is essential for his future.

*According to parent anecdotes (and perhaps in the research), children with autism have been said to frequently have allergies (such as manifested in eczema) and digestive issues.