How I’ve Learned to Move Past the Fear That Comes With Raising a Child With Autism


One thing I’ve noticed most about the special needs community is how overwhelmed we parents are by fear and anxiety. We worry about every aspect of every day, not because we want to, but because there’s so much going on in our lives that qualifies worrying.

We, of course, talk about the bigger things. We worry about will happen to our special needs children when we are gone. We worry about services and our children’s schooling. We’re terrified of the next regression that could be around the corner.

But I’ve also found myself engulfed by fear during my everyday life. I don’t speed, and I always use my turn signal because God forbid we get pulled over with my autistic son in the car. He would scream and be overcome with anxiety. The officer would most likely be clueless, and the situation would escalate to myself and my child being taken out of the vehicle and questioned or worse.

I fear every time we go into a store or to a new place that something will upset him. A child crying or the store testing its alarms that will push him over the edge and cause a panic attack or meltdown from which he cannot recover. Yes, that happened; he was traumatized for months and always associated Walmart with that terrible sound.

Every time we lose a service or get waitlisted for a therapy, I fear regression. I fear skills we’ve worked so hard to master could be lost. I fear without therapy he will be delayed in some areas much longer than he would if we were getting the right services. I fear every move for this reason.

I fear ever being in a car accident with him in the car. His brother once ran their power wheels into a tree while he was in it. He would not go anywhere near the power wheels for months after that. Once we ignorantly went through a carwash with him in the car. It took a week and a lot of therapy, a lot of tears and screaming to get him back into the car. Can you imagine if we were in a car accident? I fear he would never get back in a car without severe anxiety.

Every time I get into the car without my children, I worry I could be in an accident and die, and my children would all have it so hard, and my son with autism would fall apart and regress far into his own world. Every time my husband gets deployed or has to go overseas for work, I fear something could happen and my children would be without a father and a provider, and we would lose the health benefits that mean so much to my son.

Every time I hear a siren and my son is not with me, I panic and my heart jumps into my throat. Is it him? Did he get out of the school and get hit by a car? Should I even send him to school if I can’t be with him constantly to make sure he’s safe?

I constantly worry about the medicine, the foods, the chemicals to which I expose my children, especially him. I cried before we gave our youngest daughter her one-year vaccines, because even though our son’s autism had nothing to do with vaccines, there’s a culture of fear surrounding our special needs children.

I don’t know about you, but there are days when I want to stay in a bubble with my family. Days when I just feel paralyzed by the fear and anxiety. But if I let that fear overtake me, I cannot live and, even worse, my children cannot live and experience the world around them. Unless we move forward from the fear we will miss out on all of the amazing moments and experiences we have every day with our children.

Even though I worried about being able to adjust to having a third child with so much on our plates, we moved forward, and I am so thankful we did because she’s an absolute joy. All of our children have brought us so much happiness and I refuse to get so bogged down by fear that I don’t get to experience that happiness.

This post originally appeared on From the Bowels of Motherhood.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

To the Stranger at the Carnival Who Understood My Son

In the summer of 2014, some friends invited us to visit a local carnival held on the grounds of one of our local schools. We were slightly hesitant as my son, Alex, who has autism, was a bit of a loose cannon at times. Would there be anything for him to do? Would there be [...]

10 Ways Being an Autism Parent Has Been Different Than Being a 'Typical' Parent (So Far...)

Lila is our one and only and, from what I can tell so far, here are just a few of the differences between us and parents of children who don’t have autism: 1. The Routine For the love of sweet baby Jesus, don’t change the routine. It’s a lot like the movie “Groundhog Day” at [...]

5 Lessons I Remember When Living With Autism Gets Hard

Three and a half years ago my life changed — at the time the change seemed bad, frustrating and confusing. I sat crying in a meltdown thinking to myself, “Why me?” I wanted to know why I was having such a rough time. My friends, family, therapists and teachers kept telling me it would get easier [...]

When a Stranger in the Coffee Shop Noticed My Son’s Disability

This morning, as my 5-year-old son trotted off happily with his two loving grandparents, I backed away quietly in the coffee shop, feeling anxious. My son is nonverbal and has autism and epilepsy. While I love and trust my parents enormously, leaving him with people other than my husband generates a significant amount of anxiety. [...]