“When are you going to get over this?” My husband calmly asked, as I laid in our bed yet again crying.
I can’t remember what event involving our son preceded it; Another evaluation, an elopement, an awkward moment at a family gathering or school, maybe it was another long meltdown.
Whichever it was, I was now lying in bed quietly crying and venting to him about all of it. Pure heartbreak and fear.
After his question, I knew he immediately regretted asking it, not only because it sounded so harsh, but also because I unleashed on him.
All I could think was, “how dare he.” The answer was never.
It felt like would never get over my three year old son being autistic.
Like a child I scolded him. How could those words exit his mouth as I wallowed?
He of course apologized and felt awful, but looking back I don’t blame him at all. In those moments there was nothing he could have said ‘right’. And the truth was that I needed him to ask the question.
I had become consumed by it all, for nearly two years. I was always on edge, or completely shut down, panicking over everything or pretending everything was fine.
There were, of course, many happy moments during this time as well. We were always trying; but sometimes it would hit me hard that we were not ever going to be typical.
I would crash hard and he was left behind to pick up the pieces. He had to carry the weight of helping his depressed wife, while we both attempted to care for a baby and our neuro divergent three year old.
He had been patiently waiting for me to reach acceptance.
In that moment of me crying on the bed, I think his revelation was that I was nowhere near.
We didn’t even have an official diagnosis yet, but I knew deep down and yet somehow also held onto the hope that I was wrong.
It did not help that no one seemed to give us a clear answer and it was easy to forget the worry of life long disability, while sitting on waitlists and living day to day in our own home.
At home the differences weren’t there. Yes, we did not sleep and things were really hard, but you don’t realize how big the differences are until you’re out in the world – or sitting across from a professional as they lay them all out before you.
I hated leaving our bubble. Even more so, I despised facing the truth.
The most important truth was I needed someone to wake me up. I needed to face reality and my husband helped me do that.
Neither my son’s life nor my life was not going to be as I had imagined. I was dreading and worrying so much that in the end I was letting it swallow me.
I was in a dark place back then and I am forever grateful for my husband’s support and patience.
Several years later I am in a completely different place.
Back then, when we were out I was in full mama bear mode.
Not only watching my son’s every move so that he didn’t run into traffic and jump off something too high, but also watching out for how others treated him. Now I have so many tools to help us.
It’s still not perfect and the bear comes out often but we’ve found our stride.
The thought of our lives becoming appointments, forms and fighting for my son’s place in it all was too much for me. Now I know to take them one at a time and to manage it at my pace.
In the beginning, I feared autism for the same reason people fear so many things. I did not know what it was or what it meant. Today I know so much more.
I have learned from my child, other parents and autistic adults. It’s my job to learn from my son and help him navigate life.
Knowing that my son would never truly fit in this world, broke my soul. I did, and still do, worry about how people will treat him.
Although now, I know to hold my head high and speak up for him. If someone does not make space for my son, they don’t deserve to be around him.
On a morbid level, I was consumed by how long I will be around. Who will help him when I’m not. This will always be in the back of my mind.
All I can do is prepare.
To make sure as many people in his life understand him and love him as possible. Trust that if I’m gone they can step in.
In no way can I speak for all parents of children like my son, but please never silence them. Don’t forget them while their world turns upside down. They may be stuck, or chasing an elusive answer. Be patient with them. Be there for them.
I found myself in a really dark space, in the beginning of our autism journey. I still wrestle with the guilt of that, but I don’t want to hide it.
Sharing experiences, like the hurdle I overcame, is what creates the awareness we all need. I had my husband to reach in and pull me out of that dark place. Not everyone has that.
I hope if anyone is in a dark space I hope they know they are not alone. They are not the only ones to ever feel that way.
I don’t know if I would recommend saying, “when are you going to get over this?” But a helping hand can help pull someone from the isolation and darkness.
Acceptance can come. It does not make everything easier, but it can help you see the beauty.