I’m An Autism Mom, Not a Warrior
Confessions from a parent who struggles
My first child was born in 2008, and I was living very far away from my family at the time. While I was still pregnant, I started a blog to share all of my *expectant* news with everyone back home. I posted ultrasound photos, weekly pics of my naked, growing belly, and of course baby shower “thank you” messages and the like.
Once the hero of the story arrived, the blog took a different tone. Inspired by my son’s larger-than-life personality, I often wrote in the first person, as if the baby was speaking. It was silly. An adult writing in a baby’s voice is just darn cute (you know it’s true).
As the years went on, I posted less and less on that blog. My family and close friends constantly bugged me to post more frequently, and I put them off with “I’m too busy” excuses.
However, that was less-than-half true. The reason I stopped writing that blog is that, once I recognized my young son’s delayed language and potential autism, it filled me with pain to write a blog as if he was speaking — which I was increasingly afraid he would never do.
I never told anyone that’s why my posting dwindled, and I was deeply embarrassed that I felt that way. Plus, with the fully disclosed details of our lives included thus far…why wasn’t I writing about his autism diagnosis?
My lesser self decided to avoid the topic entirely. The blog abruptly ended.
Avoidance never satisfies a need or a calling. It always comes back full circle to confront you. So here I am, writing about him again, but this time writing about his autism. Life doesn’t let you off the hook, it really doesn’t.
What follows are more confessions from my life as an “Autism Mom,” a title that I try to wear like a badge of honor, but struggle to live up to.
Mediocre Parenting
Often people refer to me as a “warrior mom” since my kid has autism. On the one hand — thank you for the acknowledgment. But on the other hand — not really. Most days I’m just counting down until bedtime. Sometimes we have ice cream for dinner. Sometimes I “forget” to brush his teeth, because I don’t want another wrestling match.
And I’m never, ever gonna buy that laminator that his behavior therapist keeps telling me to buy. Sorry, lady. We’re just trying to be a family here, and this token economy has shut down.
When I’m Great
I am, however, a GREAT mom when I’m well-rested, fully nourished, focused on my kids, totally engaged in what we are doing, have nothing else on my mind, and am prepared with activities and strategies for any difficult behaviors that might suddenly emerge, or reemerge.
Most days I’m none of those things. I have a full-time job, about a dozen personal projects that I can’t seem to finish, a four-year-old sister crying on my leg, about ten pounds I’ve been trying to lose for the past fifteen years, I don’t read enough, I never exercise, I drink too much coffee, and I can’t even remember to drink two glasses of water a day, let alone eight.
Plus, to keep me locked into this mediocrity, I get defensive when people give me advice, and secretly harbor a stubborn “I’ll do it my way” attitude.
That’s me. It’s not very warrior-like.
Forgiveness
I think having children is the best way to learn how to forgive your parents for all their many shortcomings. Parents are actually just people, doing the best they can. And sometimes they’re just phoning it in. They’re flawed, human people, raising really childish children. I hope my kids will one day have this perspective toward their mother.
Difficult Behaviors
One of my son’s ongoing “difficult behaviors” was flushing his glasses down the toilet. As a renter in an NYC apartment building, the heroic superintendent in my building has removed my toilet seven different times to retrieve his glasses over the years.
And before you ask — no, I did NOT then throw them away. If you can flush the glasses, you can wear the crap-filled glasses. Those specs don’t grow on trees.
These are the same glasses that survived being tossed into the rhinoceros enclosure at the OKC zoo (a zookeeper retrieved them) and were tossed out of our fifth-floor window (actually, that IS what eventually killed them).
I’m not here to offer advice, but this I will offer: It’s important to maintain a sense of humor. At all costs. Life depends upon it.
Christmas Confession
Each year around the holidays people often ask, “What does your son want for Christmas?” I know they mean well, but somehow, “I have no idea what he wants, or whether or not he understands that Christmas is coming,” seems, ya know, Grinchy. So, to preserve the Christmas Spirit, I lie and name some toy-of-the-moment. Maybe it’s true, I rationalize.
The Christmas when he was age ten was the first year that I could tell he really “got” Christmas. He didn’t get the commercial “asking for gifts” part of it, but he REALLY looked forward to decorating the tree and making the trip to the “Big Oklahoma,” where my parents live. So — I’ll take that. I was, and am, very proud of him over it.
Grinch
That same Christmas, he pulled the Christmas tree over, on purpose, and stood laughing about it as the ornaments rolled about on the floor. It was the second time he had done it, and I was furious. While I angrily scolded him, I picked up that same tree and, for dramatic emphasis . . . and forgetting my point . . . I threw the tree down on the floor. . . . breaking most of the remaining ornaments.
If you need someone to play the Grinch in your pageant next year, obviously I’ve had practice.
Burnout
There is such a thing as “caregiver burnout” and it is a very real, very important thing. If I get burnt out at my job, I can try to find a new one. But if I get burnt out taking care of my child, it’s a very scary place to be in. I say this because — it’s real. It’s 24/7. And there’s no end in sight.
Most of the people with autism that others might “know” are relatively (sorry, I hate labels) “high functioning,” meaning that by the time they are adults they are able to live and work relatively independently. Hold a job. Have a conversation. But autism is a very wide *spectrum* of behaviors and severity. And many of the behaviors associated with autism can sometimes be very difficult for parents.
There were a few years I was severely burnt out. Yes, my son is super sweet, and yes, I’m grateful. But he went through a very rough patch of extremely defiant behavior. I’ve run across four lanes of fast-moving NYC traffic to pull him out of the street. He has suddenly hit a homeless man, kicked a baby, grabbed an elderly woman, and pulled glasses off the faces of many innocent bystanders. He would grab anyone’s water bottle and drink it, pour it out, or pour it all over its owner. Consequences and understanding danger have to be learned by route and enforced rigidly. The bigger he gets, the more important these behaviors are to manage. And the harder it is for me to catch up with him.
Thankfully I have a terrific ABA therapist, and over a year ago I finally completed the process to acquire Self Directed Services through Medicaid. So now I can hire staff, and acquire respite services. These two milestones have saved my life. That sounds dramatic, but hey, I’m a dramatic gal.
We are a culture that celebrates “thinking positive” and “practicing gratitude.” And I believe in all that, I really do. But I also believe in transparency. Acceptance is about accepting it as it is — not covering it up or pretending that my daily affirmations make it easy. It’s not easy. But it is worth it. He is worth it — every single bit.
Outlook Excavation
One of the things that was a real “ah ha” moment for me a few years ago was the realization that when one repetitive behavior diminishes, another will usually take its place. I had previously had the mindset that he was going to get over repetitive behaviors. Once I made the realization that they were here to stay, and maybe helpful to him in some way, it changed everything.
A behavior that went on for about seven months was dropping objects behind furniture: keys, dishes, mail, checkbooks, cash, toys, laundry, glasses of juice, eyeglasses, paper, the tv remote, my cell phone…. Basically, anything you’d put down, he’d run and grab and drop behind the couch, or the dresser, or the bureau.
I know it sounds harmless, but in truth, it was extremely disruptive. I was pregnant with my daughter at the time, which made the constant crawling around searching for missing objects particularly difficult.
What finally got us past this behavior was “joining.” I started emphatically praising him every time he would throw something behind the furniture. I’d also randomly pick up an object in my home, and toss it behind the furniture with a flair as if it was the most fun, wonderful, blissful activity of my life.
Then every evening we’d “excavate.” I’d pull the furniture out from the wall and have him climb over and put all of the objects into a large box, then we’d put everything away. For about a week he LOVED it, which almost made me stop because I thought it was making it worse. But then the behavior started to dwindle, and eventually one day I looked up and realized he was no longer doing it at all.
This strategy was suggested by one of the wonderful teachers at his school who clearly has a love for kids on the spectrum. This teacher was SO delighted with this behavior. He thought it was hilarious and clever, and reveled in how much executive function and focus it required.
What I needed most at that time was to stop thinking so much about the disobedience, and focus instead on the behavior as an expression of a need. In this instance, a need for both attention and for PLAY, which my son struggles to do.
In the end, he and I had a lot of fun excavating every night. And I have to admit, my wildly ecstatic performances of dropping a hairbrush behind the couch quite satisfied my acting bug.
In this and most aspects of being Rory’s mom, and in all of my relationships for that matter, I’ve found that the changes that yield the most positive results are not changes in him, but changes in me. Changes in my perspective.
Which, I admit, makes me feel a bit like a warrior mom after all.
