Seeking Empathy: A Letter From The Mother Of A Child With Autism

I’m not the one with autism, and yet it affects every decision I make, every activity I select, even every purchase I make. So please understand that as a parent to an autistic child, I am never truly at rest or alone in my thoughts.

Please understand I am a crappy friend, seriously. I get so much tunnel vision with all the autism stuff in my life that I have to remind myself to ask about yours. You may think (and judge): Jeez, that lady is a right old wench, but I swear I am the most loyal mutha-trucker you’ll ever meet. If you accept me and my son, you’ll be hard-pressed to shake us. Just understand that sometimes I get caught up in a loop of worry over my child. It’s not that I don’t think about you and what is going on your life, I just get so busy putting out all the little fires around us.

Please understand that I have other stuff going on in my life that I am also stressed out about, like money — autism is expensive, really, really, effing expensive. While I can totally sympathize with parents about the cost of recreational sports and activities, I’m over here trying to figure out how we will pay for speech therapy for the rest of the year because our insurance company seems to think my son’s communication issues will be solved after only 30 visits. This also comes coupled with crushing guilt and confusion while trying to decide what therapies are best balanced with what we can actually afford.

Please understand that I am used to having to create or do things for my son because so often the world is not made for his needs and challenges. If you ask to help, I’m probably going to say “no” quite a few times before I say “yes” to you. It’s not that I don’t trust you. I am just so used to having to do it, and it’s really hard to believe that anyone else could handle it. Plus, I’m going to have to explain why we do things the way we do. Depending on the situation, I might be too drained to handle not only breaking down the steps, but also the questioning of why it’s like that in the first place. Babysitters who are willing to and capable of watching a child with autism are as rare as unicorns but it can be so hard for me to hand over the reigns to another person.

Please understand my marriage has taken a beating. Despite being lucky enough to be married to a wonderful partner, this is not the path we had planned. We are chronically sleep deprived. When your day starts anytime between “dark thirty” and “Well, at least he made it until 5 a.m.,” warm fuzzy feelings of romance start fading when I start falling asleep on the couch by 8:30 p.m. Sleep is the new sexy. Watching our son scream for hours during an anxiety-filled meltdown can shred the last nerves we have, so simply leaving the toilet seat up can cause me to snap at him. Our son also has a great ability to divide and conquer when it comes to the two of us. It takes everything I have to remember that guy on the other side of the bed isn’t just a co-babysitter that I happen to live with. He’s my husband. Our focus is constantly on our kid and his future. We as a couple just have to run on autopilot sometimes.

Please understand every outing with my son is planned like a military operation. There are no spontaneous trips or having a go-with-the-flow kind of day. Things are scheduled until bedtime. Sometimes that can be good because my son’s anxiety is greatly diminished when the day is well organized. It can also be a giant drag. “Oh let’s go grab lunch! No, wait, there is nothing on that menu that my son will eat.” “You want us to come by to your impromptu BBQ? Sorry, wish we could, but we already told our son we would be swimming at that time, so that’s written in stone.” (See above mention of how I am a crappy friend. I’m sure stuff like this doesn’t help my case.)

Please understand the simple act of signing into social media can go from mindless scrolling to suddenly finding myself in tears over something as simple as a friend posting a picture of their neurotypical kid doing some activity my child may never do. Even something as simple as a picture with Santa Claus didn’t happen until my kiddo was 10. The line was too long, the store too crowded, and the idea of sitting on some strange man’s lap just too weird for my toddler boy. I now see kids that are his age going to middle school dances and I am not sure if we will be able to tackle that. We might, but I’ve learned to guard my heart. I still hope like hell, though.

Please understand I don’t want your pity. I just want your empathy. I may look like some scatterbrained helicopter parent on steroids, but I’m a good time if you are patient with me. Just please understand that autism is always along for the ride, whether my son is with me or not.