Leading up to the Autism Diagnosis
Last school year my son started faking being sick to try to get out of going to PreK and having uncontrollable meltdowns when he did go. Then he began telling us about the kids at school being mean to him. He also started coming home with marks on him that he was not able explain. When I could not get answers from my son or his teacher, I went to the principal who called a meeting with himself, the teacher, the teacher’s assistant, and my son’s speech pathologist.
My husband and I were there to find out what in the heck was happening to our son during the day. Because they recommended it, they knew we were waiting on further evaluations to be scheduled for him. So they were there to tell us we should go ahead and prepare ourselves that the diagnosis from the upcoming evaluations was likely going to be autism.
AUTISM. Autism. Autism. Autism. . . a word we had avoided. A word that on occasion we had justified against considering in whispered tones. A word we were not prepared to hear.
Although our son struggles with sensory and speech issues, he goes through periods of extreme progress. Between that and his pediatrician not being too concerned my husband and I held on to the idea that he just needed more time. There we were though in front of four professionals being told otherwise. I have read for some parents that a diagnosis told them what they already knew or brought a sense of relief to have answers to all of their questions. Even though this was not an official diagnosis, that was not the case for me. Not even a little. I was overcome with grief and worry.
I have never projected my own hopes and dreams onto my kids. Now though I wondered if he would even get the chance to at least be an average Joe. I thought about the struggles he may have ahead, and that created a hurt so deep within me that it felt like it would break me into tiny pieces from the inside out. Sometimes thinking about it would creep up out of nowhere, like at work.
I would struggle against breaking down into strong, silent sobs at my desk. To try to hold myself together I built a temporary angry exterior that my husband unfairly got the brunt of.
The process for the evaluations was long with a lot of waiting in between each step. Wait for a call. Schedule a meeting. Wait for a call. Do paperwork. Wait for a call. Schedule observation. Wait for a call.
Nobody could have said or done the right thing to help.
My husband and I had months to prepare ourselves for what we might be told about the findings of the evaluations. I withdrew and mostly did not tell any of our friends and family about what was going on. I was trying to sort out my own feelings. While I did that, I absolutely did not want to hear what anyone but my husband thought. No matter what anyone would have said or done, it would have been wrong. I know that is not fair, but it is true.
Sometimes I could be rational and sometimes I would end up emotional. I could not tell ahead of time which way it would go. So I could literally take something someone said different depending on the second I heard it.
What? You think my son DOES HAVE autism? Why would you think that, and if you did, why would you not have said something before?
What? You think my son DOES NOT HAVE autism? You are not around enough to see our everyday struggles.
What? You are there for us? Is that ALL you have to say?
When “autism” came out of the psychologist’s mouth at our evaluation review appointment, we took a deep breath. This time hearing that one little word was less upsetting. Everyone there was able to provide encouragement and a plan. With help they think our son will be able to go onto typical classrooms and learn to cope with the things that cause him stress.
Looking back I think I went through, and maybe still am going through, the stages of grief. I am mostly at acceptance.
I pray as hard as I can everyday for guidance and strength to be able to provide my son with what he needs to be successful today and in life. More than anything though I do not want autism to define him. He is so much more. He is an inventor, a builder, a boy with a kind heart. My son may have autism, but autism is not who he is.