Autism is Hell

I want to be one of those moms who smiles and says that having a child with special needs has been a blessing. Maybe someday I will. But right now I’m here to say it is absolute hell to be an orphaned single mother of a son with autism.

Literally my entire life I have struggled with health issues. I can’t remember a time when I wasn’t struggling with pain either in my bones, my stomach, or my lungs. But I’m half-Irish and even if we are on our death bed, we will still get up and do the dishes. Pain does not stop us from being tougher than we should.

Well, until it does.

I was in a near-fatal car accident in January 2017. When I say near-fatal, I mean I was hit head-on by someone who was irresponsible enough to run a red light going well over the speed limit because whatever they were doing (other than watching the road) was more important than the three lives they nearly ended. Now I’ve been through a lot of trauma (my mother’s suicide, physical abuse, divorce, and losing my entire family in one night) but it was the accident that broke something in my brain. It was hearing my autistic son screaming in the backseat, “I’m dead! I’m dead!” and knowing that my absolute worst nightmare came true. I buckled him into his booster, I drove with both hands on the steering wheel, and I watched the light just to be sure it was green as I proceeded through the intersection. I did everything I was supposed to and still, I couldn’t protect my only child whose mind was already fragile.

There are times in our lives when we go through things that are more than we emotionally and mentally can handle. In my case, this trauma triggered a disease that causes me to have extreme allergic reactions that have rendered EPI-pens completely useless. Can I prove the accident caused it? No, but I can tell you that prior to this traumatic event I never experienced swelling of the face, tongue, throat, and neck. Now even something as simple as a mosquito bite can kill me if I don’t either have Predisone on hand or go to the ER immediately.

So while I’m having these episodes, commuting, working a full-time job and raising a child with special needs alone, my son has thrown years of expensive ABA therapy out the window.

Last week he was suspended for a day from school. Why? Because he tried to pants the principal. No, it’s not funny because he followed that up with a statement saying that he’d like to shoot her with a tranquilizer gun. When she got upset his response was, “Why? It would only put you to sleep. It’s not like I’m going to kill you.” My son is not a violent child. Prior to this episode he’d literally never put his hands on a teacher in the public school system. But he was irritated about something, gave into his rage, and let the situation become out-of-control with five minutes left in a school day. Five minutes. He just had to get through five minutes.

I got the call from the principal while driving back from a work commitment with a colleague who got to listen to the whole humiliating experience play out over my blue-tooth. The principal made it clear (because she was obviously upset about nearly being “pantsed”) that she’d send him home the next day (during in-school suspension – our compromise) if he pulled more of this behavior. So in a five minute conversation I was humiliated, frustrated, scared, worried, nervous, and panicked. How can I hold down a job with a child who refuses to use the coping skills that have been drilled into his brains through at least a thousand hours of therapy?

Losing my job is what scares me the most. It’s the reason that autism makes my life hell. It would be one thing if I were married and had some security, but I don’t. I have no one. I have no one to talk through decisions with. I have no one to give me a break when I’m just sick of trying to reason with Mr. Crazypants (who does hit me but just me). I have no one to drive me to the ER when my life is hanging in the balance.

There’s no one to lie to me and say this is all going to get better someday.

It’s possible to be too alone. It’s possible to be so alone it makes you physically ill and contemplate killing yourself just get out of the hell that is autism.

I make jokes. I write books. I eat cake. I cry. I try to exercise. Sometimes I lean on friends. But mostly I just go it alone because I was taught not to bother anyone with my needs.

If God were to grant me one wish, it’s that I could make a living as a writer and no longer have to live in fear of trying to balance keeping a job with keeping my autistic child in school or summer camp. Then I could sit with him in class when he needs the extra help rather than having the situation escalate to suspension. I wish I didn’t have to remind him that if I lose my job, he loses the things he finds comfort in (Build-A-Bear being a prime example.) and we lose our health insurance.

I want to be one of those moms that smiles and says having a child with special needs is a blessing. But I’m not. I’m the mom with the red eyes and tight lips that cries in the garage or in the car on the way home. I am the mom that’s surviving, but not really living. (Seriously, I just want two hours off to see a movie.)

I have no dreams left. They’ve been crushed and sucked out of me. But I do have the tiniest hope that one day my son (who is literally a genius) will hear my words and all the skills I’ve spent years trying to teach him will finally click. He has a choice in how he handles his emotions. I know. I’ve watched him talk himself down when he feels like it. Making good choices is like lifting a weight to build muscle–the more he makes the choice to control his impulses, the easier it will get. It’s just convincing him to do it that’s the problem. (He is a wee bit stubborn.)

My only expectation for him is that he grows up to be a good, decent, kind member of society. Is that really asking so much?

If that happens, then all of my pain, sacrifices, and tears will have meant something. Maybe then I’ll be able to look back and say I learned something.

For now all I can say is that I have found the strength to sit for two hours in his classroom (with a cold and flu) while holding back the urge to vomit and enduring a fever, just to teach him that acting out will not get him what he wants.

But I would gladly trade all of that strength for peace of mind and a little less alone.

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