Writing about the days surrounding our son’s autism diagnosis are always harder than I think they will be. Maybe it is because I begin knowing how the story progresses, and writing about the beginning reminds me how very scared we were. It reminds me that we were fortunate in many many ways, and that so any others are not. But mostly it reminds me that every day another parent is sitting in a room trying to find help and is being told that their child might be autistic.
The positive side of me wants to highlight the positive, but honesty wins, so I’ll share the down and the dirty of those days alongside the blessings we didn’t even realize were part of our experience.
Let me stress at the front that this is our experience as parents, and our observations of our son. Every child on the Autism spectrum is so very unique that while there will be similarities, everyone will undergo their own version of diagnosis events.
We didn’t know. We didn’t even have the slightest clue. We were well and truly blind-sided.
The whole process began when we decided to seek help for a significant speech delay. At the age of 2 1/2 years old our son didn’t speak. Not to say that he couldn’t but that he didn’t. He still babbled like your average 9 month old baby, and pronounced a handful of words here and there. For a while we chalked it up to him being a boy, and just uninterested in the verbal world. However we decided to see what the professionals had to say about it. Uninsured and unemployed at the time, we sought help thru the Orange County Regional Center. I called, I filled out some paperwork, and they sent a very nice woman to my home to interview me and observe my son. She explained that she was going to refer us for an evaluation with a local therapy center, and that as a matter of usual practice, it would be a complete evaluation of speech, Fine and gross motor skills, and social skills. She handed me a few pamphlets at the end and reminded my of the resources available should I find myself in need.
At the bottom of the stack was a small booklet titled, AUTISM Parent Handbook, Answers to common questions. I never even opened it, thinking that there was no need. Boy, was I wrong.
Within a few days, we were sitting is a small room with our son and a therapist who was trying to get him to play with her. He was in nuclear meltdown because he wanted the cars that she had in the corner and were not part of the directed play. I think it was less than 3 minutes into our evaluation that the supervisor pulled me aside and said, we recommend that you see your pediatrician and discuss an Autism diagnosis. I nodded, said, OK, Sure, I’ll do that, and went instantly numb. I can’t tell you what else they did. I can tell you that I didn’t cry, and I didn’t look at my husband even once in that office. We got in the car in silence, settles our son in his car seat and drove home without saying a word.
It was hours later, after picking up our oldest from school, taking care of homework, chores, dinner, baths, and bedtime stories. I sat at my computer and searched the work “Autism” and cried. I cried and I cried. I morned the loss of a life I had dreamed for my child. I was overwhelmed by the volume of work it looked like we were going to need to do. I cried thru articles about adult daycares, respite care, and divorce rates of parents with autistic children. My husband and I didn’t talk still. I cried, he held me, we didn’t talk. He mourned in silence and I simply cried. It took a few days and a few dogged phone calls and vague text message responses before I told my sister and my mom and my mother-in-law. Because if I said it, it was real, and I couldn’t undo it. But mostly, I knew then that I didn’t have the answer to the question we all ask ourselves in those first days and months and even years later. Why? How? Questions that even years later I have no answers for.
The journey with this wonderful boy of ours promised to be long and involved. There were numerous test through the therapy center, the school district, and our pediatrician. There were and still are enrichment activities for home, and 10+ hours of therapy each week at some times. There have been long days and even longer nights. I put my tiny boy on a bus just days after his 3rd birthday for a full-day preschool program with 8 hours of ABA therapy each week. I joined a support group. I cried, I danced with joy, and I learned so much about my son and myself.
We know beyond anything else that this child was created to be just as he is, and that “fixing” the problem is really not the goal. Rather we have worked to give him the skills, and tools he needs to grow up happy and healthy.
What is your diagnosis story? How did you find yourself on an Autism journey?