Stacie Sherman

Parents of a child with autism live in a constant state of worry. For those with multiple children on the spectrum, the rate of worry is multiplied and magnified.

It is so difficult to shut the worry off. God knows I try, for the sake of my ever-patient husband. Zoloft helps. So does vodka and/or wine when I get an adult break; yoga and other exercise when I have the time. I am fully aware drugs and alcohol are not the best anxiety remedy, but they do the job for this autism mama. I am nothing if not honest and occasionally inebriated.

I no longer hide my anxiety. I tried for many years to portray myself as Super-Mom-slash-Master-Juggler, able to do it all myself and handle it like a pro. But that B.S. helped nobody, including myself. It only made it worse. Pretending to be someone you are not is stressful.

Ask my husband how bad it is, and he will tell you I rarely sit still for more than a few minutes. I am constantly checking on my daughter, tending to her, remembering something I could have/should have done.

And even on the weekends where we get a break, it is still tough to allow myself to be in a state of inactivity. Sleep is a whole other story: once again, thank God for drugs.

But here is the question I ask myself over and over again, the one that keeps me up at night the most: which kid should I worry about more?

It would seem the answer is my daughter, right? She is 22, non-verbal, severely autistic. She has a high tolerance for pain and a low understanding of danger/safety. She needs hands-on, round-the-clock care. If I die tomorrow, what happens to her?

I don’t have the answer. I am working on it. I am 51 years old and relatively healthy, but you never know. Acknowledging my inevitable mortality was the first step. Planning for her life after my life is no easy task.

We are on a waiting list for residential care. I want that care to be in place before I die. And any one of us could die today or tomorrow. It is scary but so true: I lost my mom when she was 42. I am all too aware of my ticking clock.

At the same time, putting my daughter’s care into the hands and trust of another is not something I am extremely eager to do in the short term. Nobody cares for my daughter like I do, that is a fact. Nobody ever will. She is a piece of my rapidly beating heart, walking and running and jumping around outside my body.

This past weekend, we spent a few hours at our neighbor’s house for Easter. Our neighbors are a wonderfully warm couple, and my daughter was in a great mood and felt incredibly comfortable there. I always play everything by ear. We plan to stay for a half hour, but stay longer if my daughter is happy. We ended up staying for several hours.

My time at a neighbor’s house is spent similarly to time at my house: I don’t sit much. I spent my time walking between rooms carrying a glass of wine. Checking in on my daughter to make sure she was happy and not naked in the bathroom, while I tried to hold a conversation for longer than one minute.

My neighbor’s brother was there and we got to chatting. His adult son was there and is on the spectrum as well. Higher functioning than my daughter – he talks incessantly and reads and understands way more – but still a challenge for his tired parents. It was ironic, me stressed by my daughter never talking and the father stressing over his son never shutting up. Who has more stress? There is no answer to that. We all have our stresses.  Autism is a spectrum of conditions. Some talk a little, some chatter endlessly. Some read and remember, others never say a word. No two are alike.

My daughter, she speaks to me with a look, a touch, a sound, but no words. I know every sound she makes, what she is trying to say before I even urge her to communicate with me via an app on her iPad. I know what she is doing in every room of the house from the sounds I hear. Caring for Brielle is an innate piece of me. We have a bond unlike any other.

Yes, she has a father. Even though we have been divorced for many years, I will not disparage him. He is a good father, as good a father can be when he lives a state away from his daughter. That is fact, nothing he doesn’t know or hasn’t heard from me. He loves his daughter, and she loves him. But their bond cannot be compared to ours.

The bond between my ex-husband and our son is another story. They are super close, like best friends. When my son graduated community college last year, he decided to go live with his dad. It hurt, but I understood, and I do know he is in good care.

That does not mean I don’t worry about my son. In some ways I worry about him more than I do my daughter. My son is 23 and amazing in every way. He is handsome, smart, hard-working, responsible and loving. He also has Asperger’s, a neurodevelopmental condition that some loop under the umbrella term of autism spectrum disorders. His condition is not glaringly apparent. To some, it is invisible. To others who know him better, the condition shows itself in the way my son has intense interests, including music. Or in the way he sometimes directly avoids eye contact or is a little socially awkward or overanxious.

My son used to struggle with his Asperger’s. He now embraces it, for the most part, as do I. He is an incredible musician. He learns music by listening to it. He can name any heavy metal song, its singer and other band members, tell you where they were born or what year a song came out.

He works at a large home-improvement store, where the managers recognize the value of his hard work and loyalty. He makes a decent living and has managed to save some money for when he is ready to live on his own. He drives, dates, and hangs out with friends. He regularly calls me and tells me he loves me. I did good.

I have no doubt he will be able to live on his own and take care of himself. But does that mean I don’t have to worry about him after I’m gone? Hell no. I do not want him to ever struggle financially. I have not worked my ass off at a career all these years for my kids to struggle when I am gone. But how do we ensure our children are taken care of throughout their lives? Do I have to work until I am 70? Do I leave him more money than his sister? How much is a good amount? Do I put it in a trust or a bank account? Does he need an executor? Is he at risk of being robbed or taken advantage of?

These are the things that keep me from sitting still, that rob me of sleep, that put bags under my eyes and give me random panic attacks. Am I doing enough?

No matter what anyone tells us, many autism parents struggle with the feeling they are never doing enough.

This is a problem without a solution.