I was just like you. I gawked and judged anyone who mentioned medicating his or her child. “They did not try hard enough,” I would say to myself. I judged. Now I regret every rude thought that entered my mind. To those who still silently judge, this is for you.
Those who love us know how hard I tried and continue to try. I wholeheartedly believe that nutrition and a clean diet can be game changers. I wholeheartedly believe that biomedical treatments for kids with autism do work. I wholeheartedly believe that ABA therapy changes and enhances the lives of those on the spectrum. But I also know that a year ago I was hiding. We had stopped all our activities and outings. I would leave him with the babysitter longer and longer each day because taking him to a store was not an option. Years ago, we had already surrendered most of our freedom of being able to go to birthday parties, restaurants, and any place typical children may be.
Parks were our outlet for many years; they allowed him to roam freely and play without disturbing others. But by this time we had stopped going to any park that had ANY person there. We only went in the wee hours of the morning when we could be alone. Empty parking lots became our “outings” because my kids could run and play freely- and when his outbursts became unmanageable, he could safely and quickly go to our car to “scream it out” and no one would judge us.
I was scared. I was desperate. Every time he had an aggressive episode I would lose more hope, more confidence in my ability to manage him on my own. His physical strength was growing but mine remained the same. It was only a matter of time before his strength would surpass mine. Many episodes I watched helplessly as he tore our home apart and beat himself in the head mercilessly.
My world began closing in. I began to shield my friends from the horror that we lived every day. Even those closest to us did not know how bad it got. No one lived it the way I did. How could they not know? Because I hid it. Silence and smiles covered up the tears and physical marks from outbursts- the pain in my soul hid behind my fake smile.
I would like to tell you that the aggression was the worst part, but I would be lying. It was the screaming. Car rides (2+ hours round trip) were unbearable. We have all sat through a horrendous car ride with a baby or toddler crying- multiply that noise level and frustration. This was every single day, every time. Every morning on my way to work. The screaming was relentless. It pierced through my ears and made my brain shake. Having any type of conversation with my other children was impossible. My middle child began wearing headphones in an attempt to block the noise. The baby had to suffer through the torturous screams as keeping headphones on a toddler is… well… if you have a toddler you know.
The constant, hours and hours of screaming that finally made me say yes. Yes, we need help. Yes, we need to medicate him. I finally surrendered to the fact that I could not allow this to continue any longer.
Somewhere out there, there is another family in crisis. Hiding the ugly autism and putting on the brave faces needed to survive this world. I know this because I lived it.
So if you hear a momma talking casually about the medication her child is on, just know that the choice she had to make tore her up inside. Know that she questions herself every day when she looks at her child. Know that she agonized for weeks, months, or years over this decision. Know that she has tried it all and will continue to try. Know that it took everything in her to admit that she had lost control. And while she doesn’t need your approval, she most certainly doesn’t need your judgment.