6 Things Nobody Tells You About Parenting an Autistic Kid
Nothing really prepares you for parenting. Despite all the advice and reading you do, it’s still like an extreme form of culture shock. Just when I was sort of getting my footing and learning the lay of the land, my son was diagnosed with autism. I quickly had to learn the customs of a new tribe. Even though I don’t remember applying for a passport and buying the ticket for this trip with autism, I sure do love the heck out of my tour guide. Allow me to share with you some of the things I’ve learned along the way.
1. I am not strong. I am not a saint. I am not a better parent than you. As much as you may mean well when you heap praise on us, it’s not necessary. You would do this, too, if it was your kid. It’s like those incredible stories where a mother lifts a car off her child who’s trapped under it. You just find the strength to do it. This is our life and things have to be done. The temp agency won’t take my calls anymore looking for substitute moms anyway.
2. I get lonely. I only have one child, so this is the only kind of parenting I know. When faced with other parents discussing their kid’s whirlwind of activities, I’m often silent and find myself nodding like a bobblehead toy. I see many parents make social connections via what “things” their kids are doing. When you’re taking your child to various therapies four days a week, you’re just not making those connections. You might get lucky and have a nice chat in a waiting room with another parent, but that’s often as far as it will go. Trying to schedule a get together between two families with kids on the spectrum often takes more planning than most military operations.
3. I don’t need you to fix it. Sometimes the planets align correctly and we manage to get out. We meet you, and for various reasons, I might mention my child has autism. I’m usually saying it to explain a behavior you might not understand. What I’m not saying is, “Please tell me every crackpot medical study you’ve ever read about on Facebook.” Yes, I know about the Jenny McCarthy books and the TV show Parenthood. They’re part of the autism swag bag you get when your kid is diagnosed. I know these comments are probably coming from one of those “their heart’s in the right place” moments, but we’re good. Think about it. If you’re a parent, don’t you find unsolicited advice kind of annoying? Not to mention, you’re giving me neurotypical solutions to autistic challenges. I appreciate your effort, but if you really want to be a pal, just listen. The only thing I might need at that moment is to blow off steam.
4. I am not the autism information kiosk. When you meet us, you might be really eager to discuss “all things autism” and it might be the last thing I feel like talking about. I know. I want you to be interested and open to learning about autism, but sometimes I’m just more interested in discussing what happened on This is Us this week. (Why does that show leave me in tears every week? Honestly, I don’t know if I have the emotional strength to make it through the end of the season.) There are times I’ve hit my autism discussion quota for the day. If you notice my eyes are glazing over, switch the conversation. I’ll probably perk up.
5. My marriage has been through the wringer and back. Despite being lucky enough to be married to a wonderful partner, this is not the path we planned. We are chronically sleep deprived. When our day starts anytime between “Dark Thirty” and “Well, at least he made it ‘til 5 am,” warm fuzzy feelings of romance start fading when we both start falling asleep on the couch in front of Netflix by 8:30 pm. Sleep is the new sexy. Likewise, watching our son scream for hours during an anxiety-filled meltdown can shred the last nerves we have left. So, when I walk into our bathroom and find his hair in the sink after he shaves, well, it can sometimes be the thing that causes me to snap. We spend much of our free family time tag-teaming each other out so we don’t completely lose it. Breaks are important. We often don’t get to spend them together. I’m sure there are plenty of moments my husband thinks I’m taking far too long driving home from the grocery store. I know there has been many a night where I have one eye on the clock and one on the driveway waiting for him to come home from work, too. Sometimes taking the “scenic route” keeps you sane. It takes everything I have to remember the guy on the other side of the bed isn’t just a co-babysitter 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.
6. I am lucky. No, seriously. I am. I am grateful it’s 2017. So much new information has been discovered about autism. We live in the age of the internet and I can connect with another autism mom in Australia and talk about our shared experiences. I am grateful to have things like iPads that not only help my son communicate, but also give us a chance to share a moment while watching one of his favorite YouTube clips. I tip my cap to the families that went before us. They really helped pave the way for the benefits my son has now. I hope I can do the same for the ones coming after us.
Eileen Shaklee, aka Mama Fry, lives in Wall Township and blogs at autismwithasideoffries.blogspot.com.