Before having my daughter, I had two miscarriages. They were years apart and left me fragile and vulnerable to fear.
Fear that it would happen again and fear I’d lose her after she was born. Later. Someday.
Fear that kept me up at night.
Fear that still keeps me up at night.
While people are finally starting to open up about their experiences with loss, they aren’t talking about this anxiety that comes with parenting.
At five years old, I opened myself up to trusting more people to watch her and care for her when I work. That was hard but I had to let go for my sanity.
For my husband’s sanity.
For all of us.
This year, I even spent my first night away from her, ever. I feel like I have finally started to progress away from that fear.
Until this morning.
There was an article I came across by accident in the American Journal of Public Health that listed 36 years old as the average life expectancy of a person with autism. The first thing I told myself was— well she doesn’t have that kind of autism.
And then I read an article looking for those labels that I hate, the ones I sometimes cling to for both hope and denial: high functioning, low functioning, verbal, non-verbal, mild, moderate, and severe. They were all missing. No numbers. No levels. There was no differentiation and autism meant all autism.
I wanted to declassify our kids from that statistic like the women and children boarding the lifeboats of the Titanic. Like our family doesn’t drown. That can’t happen to us.
It would have made me feel better to know we were safe from such a thing.
But we’re not. We’re all the same.
It’s like we are all on this sinking ship and every time we think we can’t sink any deeper, things like this happen. Reality checks flood us.
While autism itself does not cause death, other accident based factors complicate the situation such as suffocation, asphyxiation, and drowning.
Now I have to worry about this. This crippling fear.
My daughter is afraid of water and while I want to think she won’t ever go wandering to explore unsupervised bodies of water, I can’t be entirely sure. This put swimming lessons back on my to-do list.
And last week I lost it when she put a plastic bag over her head because she thought it was silly.
Sometimes she sleeps with a blanket over her face because she is afraid of the dark and I have to pull it down throughout the night.
Now I have to worry if she truly understands.
Accidents. Children with ASD die from simple accidents. All the time. They are 2.5x more likely to die than their peers. This reminder is a kick to the gut just when I thought things were looking up.
Then I read some more.
The British Journal of Psychiatry found that the leading causes of death in those with ASD were heart disease, suicide, and epilepsy.
I played that game with Dr. Google. The one where I tried to find the answers I’d rather hear. But it didn’t work.
They found that the suicide rate among those with ASD was 9 times higher than the general population. Females with milder forms of the condition are the highest likely to commit suicide.
There it was. My daughter put into a box.
The labels and warnings on all of her medications flashed through my mind.
That one week we tried Ritalin and I had to tell myself not to worry about the warning it carried about leading to an increased risk of suicide now or later in life. Later in life. Her chances are increased because I gave her Ritalin for one week when she was young.
While I don’t know anyone personally, I have known of several local families who have lost their young children, teenagers and young adults to accidents and suicide.
I read about it too often.
One recently shook me. A child eloped from their own home when mom wasn’t looking. All I could think about was how exhausted she must have been; nobody gets how exhausting this is. The awful comments people probably wrote on the news article. How all of the alarms on doors and preventative cautions failed at that moment. The blame she probably puts on herself to this day.
I have spent so much time worrying about myself.
What if something were to happen to me? What if I die? Who will be able to handle my daughter? And her meltdowns? How will her meetings and evaluations go on without me?
While I spent so much time being paranoid about something happening to me, statistics have rocked me back into being vigilant with my child.
But I also need to stop harvesting stress and anxiety.
Sometimes this journey is like driving around in an endless cul de sac. Here we are, back at square one.
Knowing these stats has changed me but I’m not going to dwell.
In the end, we are all the same. All of this from autism to accidents can happen to any family.