The Confessions of an Autism Parent’s Guilty Conscience

Every single parent has one thing in common: feeling terrified of being responsible for making every single decision for another human until they are old enough to make their own. This decision making starts long before the baby is even born…to breast feed or bottle feed? Co-sleep or let them cry it out? Daycare or stay at home parent? The list goes on and on. Each and every time a decision is made, the parents quietly hope that it won’t completely screw up their child. Most of the time, the kid turns out just fine, regardless of which parenting style was used to raise them. Once parents know their kid is perfectly healthy and “normal,” they are reassured that every decision they’ve made up until this point has been the right one.

But what about when your child is NOT perfectly normal?

When Raelyn was diagnosed with autism, the first emotion I felt was guilt. Did I do something wrong while I was pregnant? Was administering chemotherapy as an oncology nurse somehow damaging my body, and caused me to carry a baby who has autism? Was I under too much stress while pregnant? If I hadn’t insisted on being induced, would that have changed things? Is it possible that breastfeeding would have promoted more brain development, and saved us from ever hearing the doctor tell us that our child is autistic?

These are just a handful of the endless questions I ask myself on a daily basis. I have stayed up all night long, crying as I think of anything I could have done to prevent my daughter from having autism. Every time I see her struggle with a new skill or completely lose control during a meltdown, I blame myself. I allow myself to believe that if I could just squeeze in an extra hour of therapeutic play each day, she would be doing better. On days that I spend the entire day doing therapy activities with her, I still end up feeling guilty because I haven’t had time to clean or cook dinner.

Autism parents don’t have the luxury of being reassured that they have done everything right.

We question every single decision we have ever made since first finding out we were pregnant. I have spent countless hours searching the internet for some sort of comfort in finding that nothing I have done caused my daughter’s autism. Only that comfort never comes. There is still so much they don’t know about autism, and there isn’t a definitive cause. So it is always in the back of my mind that I somehow caused this.

The rational part of me tells me that nothing I did could have caused Raelyn to be autistic. But the mother in me insists on blaming myself. As a mom, I feel that it is my job to protect my child. I am supposed to make this life easier for her. Being autistic isn’t easy at all, and it is heartbreaking to watch her struggle day to day. I do everything in my power to ensure she gets the best therapy, has the most therapeutic toys and books, and attends the best school. But it kills me that I can’t do more.

Being an autism parent is the hardest thing I have ever had to endure.

There are days that I admittedly feel sorry for myself. Sometimes I feel bitter that Raelyn has to struggle so much more than her peers. I confess that I lose my patience on occasion, and just start crying as I yell, “Just tell me what you want!” There are days when I feel like I just can’t do it anymore. I have to get out of the house and spend some time by myself. And then I am overwhelmed with guilt.

I am determined to do everything in my power to get my daughter all the help she needs. So if I fail to get a therapy approved by insurance or I don’t have time to make her a nonverbal communication board like her therapist suggested, that dreaded guilt comes flooding back. I feel guilty for being relieved that I can relax while she is at school. When I am too tired to take her to the park to play, I am consumed with guilt. If I forget to buy eggs and let her eat ravioli for breakfast, can you guess how I feel? You got it. Guilty.

Guilt is an emotion that every parent is familiar with.

But special needs parents are more familiar with this concept than any human should have to be. We endure so much judgement, criticism, unsolicited advice, and bogus theories on why our kids are the way they are. Our lives are much more difficult than most, so why is it that we are our worst critics? Why can’t we cut ourselves slack? Because if we do, our kids may suffer as a result. That’s why. Studies have shown that autism parents have anxiety equivalent to combat soldiers. Why do you think that it? Because we are our kids’ soldiers. We go to battle for them every single day, because no one else will. Our wounds may not be those that can be seen, but trust me…we are so broken, beaten down, and bruised, it is difficult to keep going some days. But we always do.

We always get back up, put our shoes on our feet and a smile on our face, and get ready to fight another day.

The battles we fight are not for ourselves. They are for our extra special children. I honestly think that sometimes I fight so hard for my daughter because of the guilt I always manage to feel. Although it is irrational, it is unavoidable. So I will continue to fight like hell for her. Maybe one day, after years of therapy, she will have made so much progress, I will be able to look back and finally feel reassured that all those decisions I’ve made throughout the years were the right ones.

Until then, I will continue to question every parenting choice I make and learn to accept that feeling guilty for my kid’s struggles is just part of being a parent.

To learn the early signs of autism, click here to read my post “My Child is Autistic…Is Yours?”