“And we know that all things work together for good to them that love God, to them who are called according to His purpose.” – Romans 8:28
The day that Luke was diagnosed is forever burned into my memory.
I’ve heard many stories from parents who were completely taken off guard when the doctor spoke the words “autism spectrum” but that was not me. The writing had been on the wall for me for months, and I had been waiting for the medical world to catch up. I can’t even tell you how many medical professionals told me that Luke couldn’t possibly have autism because he did this or that, but finally, the diagnosis came.I listened quietly – even stoically – as the doctor explained the treatment options and prognosis. I carried on a calm, intellectual discussion about the next steps. There were no tears, and even a mild sense of vindication and relief. It was proof I hadn’t been paranoid or crazy. I remember words like “I’m sorry,” “lifelong disability” and “no cure.” I made a follow-up appointment before silently ushering Luke out to our minivan and strapping him into his car seat, but as I slid behind the steering wheel, I was unexpectedly surprised and overcome by emotion. Hadn’t I fought for this diagnosis? Didn’t I already know in my own heart? I guess I was hoping to be proven wrong.
I sat in the parking lot of the doctor’s office and cried until I had thoroughly exhausted myself. I wish I could reach back in time to the woman crying into her steering wheel. I wish I could tell her, “It will be alright. There are so many things that the doctors didn’t mention.”
Many things I thought I knew about autism, I learned from watching “Rain Man.” There is one scene when Charlie takes Raymond to the doctor, and the doctor makes the statement that Raymond is “high functioning,” saying that “most people with autism never talk.” This scene terrified me in my early days as a spectrum parent; however, my exposure to children with ASD would suggest that this is completely wrong. In my experience, the majority of spectrum children do learn to speak, and many of the “high functioning” spectrum kids are difficult to distinguish from anyone else.
The doctors didn’t mention how much hope there is for Luke, and that there is a lot I can do to help him make progress. They didn’t mention how every word Luke spoke would be precious and profound. They didn’t mention what a blessing he would be to everyone fortunate enough to see his sweet, gentle spirit. They didn’t mention how unbelievably proud I would be each time he reaches a milestone or masters a new skill, or how much I would grow to admire the amazing person that he is. The doctors didn’t mention that eventually the smiles would outweigh the tears, that the triumphs would ease the sense of loss, and that faith and hope would cause me to wake up every morning eager to know what I will learn today that the doctors didn’t mention.