Now what are we going to do?

Late Spring 2004:

I watched Ron as he read over Cameron's developmental assessment, and I held my breath as he brought up particular areas within the test. "This is wrong," he would say at first glance. "No," he'd say to himself, "I guess that's about right." Line by line, as I had earlier in the day, he searched in vain for blatant errors or omissions that would change Cameron's diagnosis. When he was through, he put the report on the table, and went and picked up Cameron. He kissed him, and he looked at me through tears that were starting to form, and asked me, "What's next?"

"I have no idea," was all I could say.

The phone rang in Ron's home office. It was Ron's mother, and she would want to know what happened with Cameron. Ron answered the phone, picked up the results, and walked back into his office. I thought back to the conversation I had scantly an hour previous with my parent's. It had ended the same way that my conversation with Ron had: "I have no idea."

From the office I heard Ron's side of the conversation, "Mom, really, I don't know....no, we haven't decided anything....no, Mom, I just don't know."

Cameron got into his big, leather, rocker-recliner and began to play with his keyboard. There was the inappropriate play the women had spoke of; Cameron was repeatedly hitting the "sample" button over and over again without letting the full song play out. I watched him as he rocked and giggled - rhythmically switching between two or three different partially-played tunes. He was happy. In Cameron's "world" this was his enjoyment. He looked at me and laughed his full-belly laugh, and I forced a smile back. What we had thought was cute as early as this morning, was now an irritating reminder of the days events and what laid ahead.

I pulled out my laptop. I would have to search the internet for answers. We had far too many questions to leave unanswered until the women from the school came back on Tuesday. I Googled "Autism" and the results listed numerous sites in regards to my query. Before I would read anything, though, I reached for the phone and called the doctor's office.

At Cameron's six month check-up, Dr. MacMaster noted missed milestones, and sent us to a team of child development specialists and to Michigan's Early Intervention program. I explained to the receptionist that Cameron had been diagnosed with Autism and we needed to get Cameron in to see the doctor as soon as possible. I was relieved to find that we could see the doctor on the following Monday. Ron came from his office as I was finishing the call, and nodded in agreement as I recited the appointment time back to the receptionist. Looking back, I don't know what we were hoping to accomplish, but Dr. MacMaster was not only kind and gentle, but he was - in our eyes - wise above and beyond that of any other doctor. He would know what to do next, and I felt relieved that we were at least doing something.

Ron sat next to me as I began looking for Autism information on the web. He put his arm around me and kissed me, causing a flood of tears on my part to burst forth again! "Don't worry, he'll be ok," Ron continued, "Look how happy he is. We have to remember that this isn't a death sentence, it's just something we have to deal with."

I was so relieved by Ron's response to the news; I was terrified that he'd remain in denial and prohibit any more "early intervention". "It's just something we have to deal with," is all I needed to hear from my best friend -- my husband. I didn't have to heart to tell him that I was afraid of him getting mad at me for all of this. Ron and I flipped roles that day. Up until that point, Ron denied that Cameron had a serious problem. Yet, in the eye of the diagnosis, Ron became the rock and my support. He appeared more ease and accepting. However, I had been the one who took Cameron to the specialists, scheduled the tests, and looked for answers. Now I had my answer, and I was the one who wanted it all to go away!

The rest of Cameron's first "weekend with Autism" was a blur for me. I know my emotions were raw, my need for information could not be quenched, and my resentment for every "normal" family was honestly very high. Happy "normal" families began to appear everywhere I went, and every happy "normal" family I saw reminded me that our family was not.

I did find some information on my own that weekend. The definition of Autism was quite easy to find: "Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities." - the Autism Society of America, (ASA).

However, what I desperately wanted to find was Cameron's prognosis. More specifically, I wanted to know what his odds were. How many children diagnosed early go on to speak, read, attend normal schools/colleges, hold a job, get married; what percentage move on to appear 'cured'? Web site by web site I clicked and scrolled. I reworded my Google searches and then tried other search engines. The statistics weren't there. I'd have to wait until Monday; Dr. MacMaster would know.