What It’s Like Being an Autism Mom

autism-mom
By Karla Akins 

5:30 AM on a Monday morning. I fumble with the keyless entry to my bedroom door after unloading the dryer. I plop the basket of clean clothes on the bed and remember I left my cell phone in my office. I’m late, as usual. I punch the code into another locked door and chuckle to myself. If someone didn’t know better, they’d think we lived in a top-secret, danger-sensitive facility, and we were high-level agents with elite security clearances.
But, no. It’s nothing that exotic.
It’s autism.
autism-mom-book
I’ve often wondered how many minutes I lose punching in those keyless lock codes. The problem is, if you punch them incorrectly, you have to wait for the lock to clear, and punch the numbers in again. When I’m in a hurry, as I usually am, I almost always punch them in wrong.
There’s no simple running back to the bedroom to grab my forgotten cell phone or cup of coffee. Nothing is that easy around here. Keyless entries make one pause, punch in the code, wait for the beep.
Clear. Tap, tap, tap, tap, tap. Beep. I’m in.
Now, what was it I came in here for?
I know I’m getting older, but I also suffer from battle fatigue. At least according to researchers. Scientists have found that autism moms are as stressed out as soldiers on the battlefield. I could have told them that and saved them a lot of time and money.
Sometimes, I envy my co-workers who go home to regular lives without keyless entry doors. I wonder what it’s like to have a home where rooms are expertly appointed with the latest décor. Our style is more, shall we say, rustic, but there are memories in these walls. Each broken doorknob and crack in the drywall is a reminder that adventure has taken place.
That paint all over the freshly stained bedroom doors and floors in the basement? That’s from when the twins were twelve and decided to be like daddy and help paint. Those holes in between those two bedrooms there? That’s when we had the bright idea of giving them their own bedrooms. They tunneled through the wall to see each other. (No, they were not locked in their rooms.)
Autism’s tentacles stretch like clinging vines into every empty space in our lives. From our physical home to our daily routines and sleepless nights.
If I could wear a t-shirt every day explaining the bags under my eyes, here’s what it would say:
  1. I’m tired. I’m always tired. My kids don’t sleep all night. Never have. Never will. I have to check on them to make sure they’re not eating everything in the refrigerator or painting another room. I sleep with one eye open. Seriously. It’s a thing.
  2. One does not grow out of autism. It is a life-long condition. You cannot make a fish a duck. A fish will always be a fish. A person with autism will always have autism unless someone comes up with a cure.
  3. Autism is a diagnosis. It’s not who my child is. I know I wax dramatic about how it affects us, and while I’m not being hyperbolic, I do hope you’ll see past my sons’ diagnoses and see them as the clever, fascinating, funny people they are.
  4. Autism is different in every person.
  5. Autism is isolating for many families. It’s not easy to find a babysitter. My husband and I rarely get out on a date by ourselves. If we do, it’s maybe once a year on our anniversary, and even then, it’s not on the actual day due to trying to make arrangements for the twins.
  6. When you can’t accept every invitation, friends drift away and families avoid staying in touch. By the time the teen years arrive, there is no network of support. It’s a lonely road for far too many.
  7. While some autism symptoms may be reduced by special diets, it is not a cure. The diets don’t work for all people with autism.
  8. Don’t underestimate the power of a battle-fatigued Mama. Ours is a fierce love. We love our children with autism as much as you love your typical child. We will fight to the end of ourselves to get what they need, when they need it.
  9. Don’t pity us. Don’t admire us. But please do help us. We need friends, a cup of coffee with an ally, a chat on the phone, or a visit on the front porch.
  10. We are stronger than we ever imagined we could be. We like that about ourselves, but even strong warriors get tired and discouraged and need someone to help them keep going.
Thanks for checking in. I hope you’ll forgive me for being late.
It’s those pesky keyless entry doors.

autismmomauthorKarla Akins is the award-winning author of A Pair of Miracles: A Story of Autism, Faith, and Determined Parenting and a Special Education teacher. She resides in northern Indiana with her husband, Eddie, twins, Isaiah, and Isaac, who have autism, and her mother-in-love who has dementia. When she’s not teaching and writing, she likes cuddling her two dogs and two cats, or riding her motorcycle and looking for treasure.  

You can find Karla at www.KarlaAkins.com, and she is also on Facebook (KarlaKAkins) and Twitter(@KarlaAkins).