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.

Stunned and Alone

There I sat, at my mother's table, alone, confused, abandoned, and mad. The women from the school district had left, but their words remained like ghosts that repeated over and over, "We have come to the conclusion, along with the Psychiatrist and Developmental Specialist, that Cameron has Autism."

I was not prepared at all to hear such news. Cameron did not talk, but Ron's niece didn't speak until she was five, and now she's an honor student. Cameron didn't crawl until 14 months or walk until 27 months, but he did have pronated feet that he had to overcome. Cameron didn't hold his own bottle, feed himself finger foods, or show any interest in regular foods, but his older half-brother was not just a picky eater, he was downright fearful of anything that did not come out of a fast-food bag. Sure, Cameron had some issues, but we could rationalize them away. Were we not all "quirky" in our own little ways?

I thought back to some articles I had read in the obstetrics' office about children with Autism, but they didn't sound at all like my Cameron. My Cameron was social. He loved to tickle, hug, laugh, be read to, and look lovingly at those he was close to. Yes, he did focus intently on flicking his fingers close up to his eyes while he rocked on the floor, he was obsessed with ceiling fans, and he did have screaming fits when exposed to certain sounds. However, to label him as "Severe" and "Autistic" was preposterous and hurtful!

Over two years I had trusted and befriended these women: Cheryl (childhood specialist), Pam (physical therapist), and Jamie (speech therapist). I welcomed them into my home twice a week and Cameron adored them as they played together on the floor. How could they so blatantly and coldly drop this bomb on Cameron and I, and then just walk out the door? Cheryl did say, during their report, "This doesn't change Cameron. Cameron is still Cameron." Who the hell was she kidding? This changed everything.

I picked up the paperwork the women had left for me to review. The first was a copy of Cameron's Denver Developmental Screening Test (DDST). The test was administered by the school, and included our (Ron's and mine, and my parents) input as well. It covered of all aspects of development: social/emotional behavior, motor skills and coordination, cognitive abilities, and language and speech. At age two years and eight months, Cameron's highest score was just over one year for social/emotional behavior and his lowest scores were under six months for both language/speech and cognitive abilities. Cameron's motor skills and coordination fell within the two ranges. I looked for errors; they had to have miscalculated something or perhaps omitted some key information. I read the report over and over, but I could not find anything misleading or erroneous.

I picked up the second form the women had left. It was an application to the Michigan Department of Mental Health for a family support subsidy in the amount of $222.11. Cheryl had already filled in the diagnosis information and signed it. All I had to do was attach a copy of our tax return, sign, and return in the attached envelope. That was it. There was nothing else. There were no pamphlets defining Autism, no booklets filled with happy parents of cured children, no lists special Autism schools, no course of action, no prognosis, and last, but not least, no hope.

I knew what Ron was going to say. He did not believe Cameron needed any intervention in the first place; he maintained that his son was stuck in a system based on the school's economy -- more kids in the program equaled more funding for the school. He was already mad at me for "opening up this can of worms" as he called it. I considered not telling Ron about the results. But, damn it, he was my best friend - the "love of my life", and this is our son, if I could not talk to him and get support then I would simply implode! I put my head down on the table and started crying.

After a few minutes, I sat back up, and read the report again, this time looking for points to convince Ron of that which he was so vehemently avoiding. Ron insisted Cameron was just doing things "in his own time", even if "in his own time" meant missing milestones completely. I likened Cameron to a child putting his life together like a puzzle; Cameron was building his own puzzle, but he was putting some pieces in the wrong spots and throwing some pieces out completely. A sad picture of Cameron's future formed in my mind. I choked back my dreams of him proudly handing me a crayon masterpiece saying, "It's a picture of you and daddy to put on the refrigerator," and replaced it with a withdrawn, mute, and emotionless child being teased and tormented on a playground.

Ron was clearly in denial in regards to Cameron's missed benchmarks, and he was going to flip a gasket when I give him this news. He was already mad at me for commenting once, when I took off work for Cameron's therapy, that Cameron was my number one priority. Ron resented that statement, and he would haunt me with it for the rest of our marriage. Ron loved Cameron and loves him more as each day goes by, please don't misunderstand my words; Ron envisioned a marriage that was just us two - children, including his own son from a previous relationship - would be loved, but marginal to our relationship.

I looked over at Cameron. He was rocking in his favorite chair in my parent's living room, a blanket covered his head. I could tell that within the confines of his personal tent he was flicking his fingers; "stimming" is the term the women used for this, and it refers to self-stimulation. I called out to him, "Cameron!"

The rocking and stimming continued.

"Cameron!" again I called out, hoping beyond hope that this was all a bad dream and he would remove that damn blanket from over his head and reply, "yes, mama?"

Nothing. No reply. No cessation of stimming. I went to him and picked him up as I sat back down into the rocker with him cradled in my arms. I removed the blanket from his head and stroked his cheek. He smiled, completely oblivious to my saddened face stained with tears. He giggled and pulled at my hair.

It was true. It was all true, and there was no denying it: Cameron had special needs. Why him?! Why me?! I had just lost my sister-in-law, Yvonne, one year earlier to cancer, and I was still grieving that loss. Now, I had "lost" my son and could feel my marriage slipping away too. The reality flooded over me and I broke down into a cry that I had been holding back since Cameron's doctor sent him in for testing at six months of age.

I felt abandoned and so very alone. I wanted desperately to call Yvonne; she would know exactly what to say and what to do. But, that was no longer an option. Instead, I cried. I cried for the child I had just "lost". I cried for the young man that would never be. I cried for the arguments that were going to come when I took Cameron home. I cried for the time, not so long ago, when everything was perfect and Ron and I were so happy.

He'll go on to do great and wonderful things.

My pregnancy was planned; I monitored my cycle for two months beforehand, and developed calendars that showed my ovulation window, time to test for pregnancy, and -- if positive -- a due date. My husband, Ron, and I took advantage of my ovulation window and then waited for the day I had marked on my calendar to take the test. As the circled day drew near, I purposely erased the date and extended it three more days. Nevertheless, the test came back "negative". It was our first try -- no problem -- we could try again next month. I readjusted my calendar.

Two nights later I had a dream. I was standing in a field by a lake in our neighborhood. I was facing the north and large billowy clouds began to roll in my direction. Suddenly, yet softly, a beam of light split through the clouds and illuminated my body. I gazed upon my arms and hands; they were glowing in an out pour of iridescent showers of golden crystals and sparkling diamonds that permeated my skin. Yet, in the midst of this splendor, I became confused and began to panic, "Am I dying?!" I shouted out in my sleep.

A voice, soft and loving, spoke to me words that I will never forget: "Your son is with you, and he is anxious for life. He'll go on to do great and wonderful things."

I was puzzled and thought to myself, "How can this be? I'm not pregnant."

The voice continued, "He has much to do, and many obstacles to overcome. Know that he chose this path, and he's counting on your love and support."

I woke immediately, and without thought I darted into the bathroom to take a second pregnancy test. I focused on my watch that sat on the bathroom sink. It was 5:12 a.m., January 2, 2001. After a few moments had passed, I closed my eyes and said a little prayer, "Please, God, let it be positive." Slowly, I opened my eyes and looked at the stick. "Positive / Positive".

My heart skipped a beat, and tears welled up in my eyes. I went back to the bedroom, and gently shook Ron's shoulder.

"Honey," I whispered, "Honey, wake up."

I clicked on the small light next to the bed as Ron woke and asked if I was ok.

"I'm pregnant," I told him. Ron looked at me in disbelief and then a smile grew upon his face.

"What...How...Are you sure?!"

"Look, I just took the test again," and I showed him the test stick.

Ron hugged me tightly and pulled me next to him in the bed. We laughed a little, he held me tight, he congratulated me, he congratulated his role in the process, and then he kissed me on my forehead. "I love you, you will make a wonderful mother."

I was still smiling as I went over the dream and the events that unfolded. I wondered to myself, "What great and wonderful things? Brilliant businessman? Philanthropist? President?", and I drifted back to sleep.