The thing is, there’s something about my son that I know, but we don’t actually know, but we want to know, yet I’m scared that we will be told, “no,” about. It’s a word that makes me tear up even as I am about to type it here. It’s this thing that I’m grappling with knowing but not actually knowing, and I’ll be sharing my deep emotional struggles with that all week.
I know that autism is not the end of the world. It’s a different way for the brain to process the world in which we live. I do believe that whole-heartedly. That being said, this is also a deeply emotional journey.
I am terrified that he will not receive the diagnosis.
I see the signs, and it seems I am adding more to the list with each passing week. He needs the proper therapy and supports in place for success at home and in school. I know that without the diagnosis, it is likely he will not receive all that he needs to succeed. He often presents as neurotypical. I find myself terrified that his case will be dismissed as just a child with obsessive compulsive tendencies and parenting that needs to be stricter to control his aggression, outbursts and defiance. There’s so much more to it than meets the eye.
I expect to have a strong reaction if he does receive the diagnosis.
During C’s health journey I have, without realizing it, taken on the outlook of, “This is temporary.” Someday he will be able to sustain himself orally and we can have the g-tube removed. Someday he will take what he has learned in OT and utilize it to cope with his sensory needs. Then there’s autism, which seems so permanent. I know that there are many people with autism who live fulfilled, productive lives. But the bottom line is that an autistic mind works differently. It always will. I think the permanence is what is weighing heavily on my heart.
I desperately want to be on the other side of diagnosis.
I currently feel like I am in emotional purgatory. My heart feels that my son has autism. My brain is trying to process what that means. What will his life be like? Will he be bullied for being different? Will therapy help him with the behaviors that make daily life so difficult? Will we be able to obtain adequate support so that he can be successful in school? God, why does life need to be harder for my baby? I’m trying not to get ahead of myself. I’m trying to be sensible, rational and take-charge about it all. What I really am is a stressed, exhausted, emotional disaster.
I am doing my best to, “let go and let God.” But dagnabit, that is easier said than done.