Today is our one year anniversary.
We were at his 3-year-old well check up.
It was already on my list of things to ask the doctor about.
On April 7, 2017, we went in for a regular well visit for my youngest son. We had finally completed all the post-operative follow ups from the brain surgery. For sure, the worst was behind us. That’s what I kept telling myself. Also, I am usually considered someone a little anxious, perhaps a little hypochondriac-ish. I didn’t believe wholeheartedly that my diagnosis was on point, but I needed validation. I wasn’t crazy. This was harder than regular parenting. His behaviors surely indicated the need to look further into the “why.” It wasn’t supposed to be this hard, and I needed someone, a professional, to validate me. I needed someone to justify to me why staying home with my child day in and day out was becoming something of a terror. Why couldn’t I make sense of his needs, his obsessions, his anger? What was going to make it change? Yet, the validation of autism only made it better briefly. Great! I wasn’t crazy. But, if I wasn’t by then, the next few months and years were surely going to test my limits. They were guaranteed to push me to my borders of sanity and ability to control my own anxiety.
As I left that visit, my head was spinning in more ways than one. Physically it was, from the chasing him through hallways, attempting the impossible task of staying one step ahead of his climbing, flipping light switches on and off during my discussion with the doctor, and yanking her laptop off her rolling desk. I was doing my best to prevent him from getting into everything he shouldn’t, every cabinet, drawer, and door that was unlocked at the doctor’s office. We finally got back to the car. He grasped at two broken pieces of chalk that the doctor had let him keep in his tightly closed little fists, since “pick your battles” was one of our main discussion points. How was I going to decide which battles were worth picking? The battles were fierce and wildly changing on a minute to minute basis.
How was I going to deal with this, nonstop, possibly forever? The toddler years come and go for most parents, but will mine? Maybe autism won’t let him mature beyond 5 or 6 years old mentally. Of course, my head went there immediately. I wasn’t able to think clearly. Could you blame me? When he was finally buckled in, I sat down to breathe and try to collect my thoughts.
Thus began the journey, the change, the world upside down. I suddenly saw all the things we weren’t going to get to do together or have, and I couldn’t see anything that we still would. It began a whirlwind of sleepless nights, either because he was screaming and repeatedly kicking his walls and bedroom door, or because he was quiet, and I was up all night on the internet searching everything I could find autsim related. I read hundreds of research articles. I joined every Facebook support group I could find. I contacted every mother of an autistic child I could think of. I needed more information. There had to be a way we could “make this better.” I was grasping for straws. I was desperate. I was not going to give up on figuring out how to make my child seem the “least autistic” possible. That sounds terrible, but it is honest. It’s where my head was at. I paid hundreds of dollars to take ABA and behavior modification and language building courses, continuing educations for speech therapists and ABA therapists. I was going to get control of the situation. I reduced my job hours and our income significantly to pursue everything possible for him. If only I could get back control.
If I could control everything, every, single, thing, then… this could all be better.
The truth is, there was very little I had control over.
I couldn’t shorten waitlists.
I couldn’t make the diagnosis go away.
I couldn’t make him enjoy being around peers, or enjoy saying hello to people.
I couldn’t make him behave like other kids.
I don’t even know why I felt that I had to, but I felt it so strongly.
I had to learn to give it up.
That was where I came from. Thank God, it is not where I am today. I can look back at where I was, and see how far we have all come. Autism initiated a transformation in each family member living in our home. It was a painful, but necessary, process. Some wonderful therapists have guided each of us through this progression of accepting who we are, but also helped us to perform at our reasonable best.
I know that ahead of us lies a very long road of unknowns, but whose life doesn’t?
To anyone newly going through this, I have some advice. Cry, as often as you need to. Get counseling for yourself. Talk to someone about your anxieties, worries, fears, anger, and grief. Get to know what worked and didn’t for others going through it. Dress yourself up nicely from time to time. Feel good about your physical appearance, even though you might feel worn and exhausted. Accept that your life is still great. Perhaps, the most important thing would be to enjoy your child. See them as the beautiful human that they are. See the good in them. See the gains they have made. See that their unique characteristics are to be valued. Then, when you’ve got your feet back on the ground, be the person for someone else that you wish you had when your child first got the diagnosis. Someone else, going through this, feels alone right now. I promise you, just letting someone know that you have been there and are able to relate, can make all the difference in the world in how somebody else’s journey begins.