The Parts No One Talks About
There are parts of autism that the world simply doesn’t talk about.
The ugly parts. The scary parts. And the sad parts.
No one talks about physical aggressions or self injuring. Or fecal smearing. Or even what happens to nonverbal, severe kids when they grow up.
And I don’t just mean age 20. I mean age 60, long after their parents are dead.
Do they go into nursing homes? Who cares for them?
Instead, we hear about the beautiful parts of autism. And the dramatic ones. The newsworthy ones.
You hear about a nonverbal boy getting asked to prom by a cheerleader.
And an autistic girl becoming a lawyer.
You hear about inclusion. And I suppose exclusion too.
You hear about autistic kids being abused on buses and in schools.
You hear about the big things. The things that sell papers as they say.
Those things aren’t my life. Not even close.
We are just your typical family.
Mom, dad, three boys, two dogs.
We work. We play. We try to sleep.
We don’t have any big things.
Our life is pretty mundane. Pretty simple.
We also, thankfully, don’t have much of the sad or scary parts of autism either. We don’t have fecal smearing. We don’t have eloping. Or seizures.
We do have some aggressions. Mostly kicking. And we are doing everything in our power to curb that right now. Before puberty sets in. And our boy gets even bigger.
But we do have other struggles. Ones that feel huge to us.
To our little family. They aren’t newsworthy. They won’t make the front page.
But good golly they feel huge to us.
Our family is divided. We have to split up to do everything. Because Cooper can’t leave the house. Or sit. Or walk safely in the community.
We get out, to a baseball game or a zoo, and he immediately runs, darts, drops to the ground and rolls.
It’s quite dramatic really. And we are trained. We are ready. We know what to do. And once it gets unsafe, like it always does, one of us heads home with him.
Typically after just five minutes.
Or, one of us just stays home with Cooper from the beginning.
It’s taking it’s toll.
I worry that I am missing my six year old grow up. And Jamie misses the life we could have. If we could travel. And camp. And not always say no to every invite.
And late at night, when it’s just Jamie and I, we talk about everything we are missing out on. And the life we thought we would have when we pictured the future.
Friends, events, community, being together as a family, etc. We talk about how we can’t do this forever. How it’s killing us.
And after little bit of silence, we will both always agree, we have to figure out a way to make this work.
Because he is staying with us forever.
There is no question. We both agree on that.
But I will tell you, that while it’s not newsworthy, the weight and stress put on our little family is unbelievable.
And after so many years, we are really feeling it lately.
No one talks about this stuff. But I know we aren’t alone. We can’t be.
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