My Experience Parenting a Child on the Autism Spectrum

By Loryn Stone

I’m going to take a break from geeking out over my hobbies and vices and take some time to talk about something severely more important to me; my son.  So, a quick tidbit about my overall parenting style before we begin- I’m the sort of person who has thoroughly rejected Parenting Culture, which means I don’t participate in Mommy Meet-Ups, Group Family Trips to Anywhere, Mommy Aerobics, or anything where I have to look at strangers with the things that came out of their bodies. To clarify, I love children. I love hanging out with children. I love my friends and their children. But I don’t surround myself in situations with people simply because we all have children. Does that make sense?

Awesome- moving on.

This evasion is a good part of the reason why my internet writing revolves around easily digestible things, such as fan theories, trash food, pop culture observations, and beer. I mean, yeah, they kick ass, but also, I like to experience a good amount of escapism in my writing. I’d wager it’s the same for many of you who probably like to be transported in your reading. But every once in a while, we get to a point where we have to reel it in. And if you follow me on social media, you’ll see that I, for the most part, keep topics light, pleasant, funny, and engaging, free of overly political content, sexualized content, or spamming content.

Or at least I try. Sometimes, I get excited. I can’t help it.

But life isn’t always like that. Life is full, and layered, and challenging. That’s why for today, I want to talk about parenting. It’ll likely be one of the few times I do. But I feel like I have an experience to share and if it can provide any perspective, help, or support to other parents out there, then that’s worth breaking through the cartoon-goon shell I’ve designed as my personality for just one day.

You see, back in 2015, my son was diagnosed on the autism spectrum.

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My son Avery is my first out of two, born on 12/12/12 which is just about the coolest birthday a person could have. He was a sweet and mellow baby, a good eater and relatively good sleeper. Cuddly and loving, he was ahead on all of his physical milestones such as smiling, rolling over, sitting up, crawling, walking. His gross motor skills were excellent. Which of course, as a first-time parent, made me feel like I had some kind of awesome warrior-baby. Hell, I still do. I’m not taking it back.

But then it came time for those sneaky toddler milestones. The fine motor skills such as pointing, holding up two fingers at a time, and that big deal one called “talking”.

That’s when the concerns started rearing their ugly heads.

 

Early Signs and Red Flags

Parenting books lead you to believe that autism spectrum diagnoses exist on a series of very obvious red flags. Well, early on for me, they didn’t. To this day, I’m not sure whether it’s because the obvious ones didn’t exist, or because I was denial.

(Keep that word “denial” in your pocket, because we’re going to come back to it)

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Avery wasn’t a picky eater. He made amazing eye contact. He’s always been incredibly affectionate, and he’s always had a wonderful sense of humor. He never shied away from any clothing materials, was never affected by any sort of “sensory” things (swinging, spinning, wet paint, cold foam or bubbles, dirt or mud, etc.) He didn’t walk on his toes, spin or fidget, watch dirt or sand dropping spilling through his fingers, or flap his hands.

But the words just weren’t coming. In fact, the few words he uttered seemed to be disappearing. Looking back, I guess that was the first red flag. Then, somewhere around 16-18 months, a few strange behaviors started to emerge in Avery, ones that in spite of my best effort, I wasn’t able to coerce him out of.

First, he started banging his head. Wood floor, tile floor, it didn’t matter. And it never seemed to hurt him. When the behavior first started, I was terrified, constantly screaming and crying and begging my baby to stop hurting himself. But after a while, I think I started giving up, or even accepting that I couldn’t control it. I have one distinct memory of having my sister over for a visit and Avery started slamming his head on the floor. My sister yelled out frantically for me to make him stop. But I stood in one place, unaffected. I didn’t do anything. I didn’t try to make him stop. I wanted him to realize it hurt- I wanted him to learn his own lesson.

One day, sometime before he turned two, Avery hit his head on the concrete patio and finally, with a bruise on his forehead, realized it hurt. That put an end to the behavior. Unfortunately, around the same time as the head banging started, severe biting did as well. And it came seemingly out of nowhere. Because of his lack of verbal communication, Avery would become incredibly frustrated when he didn’t like what was happening. I still have a scar on my thigh from when I was standing, talking to a friend, and Avery ran up to me and sunk his teeth through my flesh. One time, during a haircut, he bit the hairdresser. He broke through her skin and she was livid.

Why did that happen? Obviously, because he was scared. Many kids are afraid of haircuts for no reason, but where Avery differed from his peers is that there was nothing I could do or say or show him to help him understand that he wasn’t in danger. And I didn’t have any good methods for making that behavior stop, other than pinching his cheeks or pulling his ear when he was biting, trying to shock him to make him just open his jaws. Fortunately, shortly after he turned two, the biting stopped as well.

What came next was his lack of playing with toys, climbing, and overall social engagement. There are many children who don’t start speaking until they’re closing in on three. That’s not unusual, every child is different. But the lack of words in and of themselves isn’t the red flag. You can clearly see children who don’t speak, but are very engaged in play. They curiously examine toys. They imitate their parents talking on the phone. They point at things and babble with inflection that sounds like conversation. They show interest in other children and observe what other people around them are doing.

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I meet concerned mothers at the park, over and over again, who all think there’s something wrong with their kids because they don’t talk. Then I tell them, “Look, I’m no doctor, but your kid just ran up to me, a complete stranger, did a little dance for me, and tried to get me to play on the slide with them. She’s fine.”

But as for my own baby- these traits and behaviors were just different. I remember one day specifically when my husband and I took our son, who was probably a little over 18 months, to the park. Other babies were running, climbing, playing with each other…and my son was sitting in a pile of dirt. Just sitting there with a bucket, smearing it around, unable to use a shovel, unable to engage. Watching Avery made my husband cry. That’s kind of when I knew it was time to be strong and face this beast, really determine if something was wrong and what we needed to do.

 

The Diagnosis Still Took Forever

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At 18 months, Avery’s doctor (Dr. Kim) referred him to speech therapy with some useless quack who set up shop in her home office. I took him to one evaluation, but the therapist was very frustrated by Avery’s stubborn inability to follow directions and never returned my calls to initiate sessions.

Annoyed, I waved it off and didn’t bother to tell his doctor. But during Avery’s two-year checkup (when I divulged that Avery had somewhere between 0-5 words in his vocabulary), his doctor freaked out at me and said we’re doing something about this now.

Dr. Kim referred us to another small speech and occupational therapy office called Wellness Works in North Hollywood. They used insurance to cover the sessions, where we were eligible for 32 half hour speech sessions and 6 occupational therapy sessions. Avery did not take well to the speech or OT sessions. The facility, without any medical permission, declared him suffering from a Sensory Disorder and treated him as such. Which, in a nutshell, meant they sat him in an awesome baby gym with tumbling mats and trampolines and other fun things…and wouldn’t let him use any of them. Instead, they sat him on a swing and tried to get him to do puzzles.

It was like taking a kid to Chuck E. Cheese and making him do his homework. Needless to say, I wasn’t happy. And I wasn’t disappointed when my insurance was no longer accepted there a month and a half later.

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I reported the results to Dr. Kim, and he suggested one last place- The Regional Center. There are 21 offices throughout California, with services provided by the Department of Developmental Services. Early intervention services are available to children from age 1.5-3 (if I’m not mistaken), and it included 16 hours of free preschool per week, and in-home one-hour speech therapy session. Right before the child turns three, he/she is evaluated for autism by one of the clinic’s child psychologists. If the child is on the spectrum, services then segue to the public school system. If the child is developmentally average, services cease and your kid will eventually open their trap and start spilling words.

It is a tremendous service, one I hope is available in other states. I fully recommend that if you think your child may be on the spectrum, or are concerned for his/her language development that you ask their doctor about what equivalent services are in your area. Because there is help out there for families, and knowing that has been hugely helpful and comforting. It’s helped me feel less lost on this journey.

The long and short of Diagnosis Day: Avery had been attending preschool at a local Montessori school, a method of learning that never personally appealed to me, but hey, it was free. He was cared for there and for the most part stimulated, but my opinion of Montessori remains unchanged. Truth be told, it was glorified day care. But I had a newborn at home. My mom was dying. The school was the least of my concerns.

Avery turned three and we went back to the Regional Center for his evaluation. I couldn’t even get him in the office for it. He literally wouldn’t go inside the room. He screamed and pulled the door open, running down the hall. My husband had to take him to the waiting room. Avery was inconsolable. He was belligerently angry.

Less than a week later, I got a phone call from the tired, overworked, unimpressed psychologist who evaluated him. ASD, Autism Spectrum Disorder. She declared my son autistic. The red stamp was on the paper. There was no turning back.

I wanted to scream at her. I wanted to cry. I wanted to tell her that she didn’t understand, that she didn’t know Avery, that he was fine and perfect and there was nothing wrong with him. But doing that would affect any early intervention services. It would affect future schooling. It would affect all the help and opportunity that was coming his way. All because I was a smug psychopath who decided, based on nothing, that I know more than a trained professional?

I kept my mouth shut. I figured he’s young. Education and learning never hurt anyone. He’ll think he’s playing. He’ll be around people who love him.

Silence was the best decision I ever made.

 

Education and Life at Home

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I used to say angry, dramatic things like “All the speech therapy and excessive doctor visits ruined Avery’s babyhood for me.” Looking back, I realize they’re a little untraditional, but it all builds on the layers that shape our lives together. At least his health is perfect and he wasn’t at the doctor all the time for something serious or life threatening, thank the moon and stars. And all of the early stuff leading up to his diagnosis helped get him where he is happiest- at school, learning.

Avery loves school. He’s been in special education preschool since he was three and he’s the star of the show. His vocabulary has exploded. He’s been fully potty trained since he was three and a half. Now, two months shy of his 5th birthday, he’s finally asking those empathetic questions, things like “Where are you going, what are you doing, what are you eating, can I have, are you hurt, etc.” He has at least a first grade reading level, knows more shapes than I do, can name all the days of the week, months of the year, colors, and can spell each and every one of them. He’s the star of the show at school, singing songs with enthusiasm, laughing at jokes, telling his teachers about his favorite things to do, which right now, is mostly cooking in the classroom’s toy kitchen. Luckily, he is starting to play with kids, taking turns back and forth in the kitchen, instead of parallel play, which is when kids play near each other.

But seriously, those YouTube kitchen toy reviews are insane. Give a kid a toy microwave and he’ll play quietly for hours.

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But we have our challenges. For example, Avery often has a tough time answering abstract questions. Sometimes when his peers or other kids ask him a question, I either have to repeat it for him like an interpreter, or he will just ignore it. It’s led to some kids asking me “Why won’t he answer me? Why doesn’t Avery want to play with me?” It breaks my heart. It makes me sad for Avery. It makes me sad for the kids, who think Avery doesn’t like them. It ultimately come down to him playing differently than some other kids.

Fortunately, outside play is typically more successful than inside, imaginary play. Avery’s love of the Zelda game Breath of the Wild has been enormously helpful in engaging his imaginary play. He goes outside and cooks, hunts monsters with his sister, and collects rocks as weapons. Which is as terrifying as it sounds, as with any four-year-old collecting rocks. We’ve also recently moved to an incredibly suburban area at the end of a cul-de-sac where the kids on the street ride bikes and scooters outside together. This togetherness has been very helpful for Avery too, who loves watching the other neighborhood kids play.

Plus, he has a little crush on the very sweet eight-year-old girl down the street.

Some people like to share “I’d never know there was anything going on with him if you didn’t tell me”. Others say “Yeah, I thought there was something, but I couldn’t put my finger on it”. Sometimes Avery blends right in. Other times, like at the park, he can’t play on the playground equipment because he’s too fixated on reading all the park signs (and needing to touch them), and visiting the bathrooms. In one, and out the other, in a seemingly endless loop. There are stores we go in that we have to navigate in a specific order, per Avery’s deciding, otherwise I’ll be in for screaming and a nasty tantrum. It also makes family trips like to the zoo or aquarium unpredictable because you never know when he’s going to pop.

Now, here’s the funny thing about it. Lots of four-year-old kids display sucky behaviors. But what’s interesting with high-functioning autism is that to this day I’m never sure where “shitty 4-year-old” ends and “autism spectrum” begins. And truthfully, it puts me in a panic sometimes. I’ve never considered myself anxious. I don’t have anxiety and depression. But sometimes, the unpredictability of Avery’s behavior is enough to send me down a spiral.

Similarly, once we master one behavioral issue, another one pops up and it’s a whole new set of problems all over again. For example, my son has this habit of brushing his hand over his little sister’s face. He won’t stop. He can’t stop. And no matter what we do or say, it doesn’t help. The same thing with touching the TV. He runs his fingers over the TV in this strange and specific way, and has been since he was 2. He won’t stop.

I get jealous of my friends who can take a knee and explain things to their kid. That doesn’t happen in my world. Avery doesn’t care what I tell him. Taking a knee and explaining doesn’t help or do or teach him anything. He needs to find a different way to learn everything. This makes moral lessons scary, because he doesn’t listen to the words “Stop” “No” “Don’t” and “Enough”. But I get angry when people “try to connect with him” or “change their behavior to work with him”. I know I shouldn’t- I should be grateful that people are so caring and willing to adapt to him. But I’m in denial. I want him to be treated like everyone else. But more and more, I’m seeing that just won’t work.

So, ultimately, what is life like today? Well, simply put, it’s amazing. While we do have challenges with Avery, they’re very minimal compared to families whose children are on the opposite end of the autism spectrum. Avery is shy, sweet, and isn’t violent. I love that he’s now talkative but not precocious. I wouldn’t know what to do with a precocious kid- doesn’t suit my family structure. Avery loves learning. He loves basketball. He loves laughing. He loves his family. He loves animals. In most ways, he’s really very similar to most kids his age.

It’s the first time I’ve said that since he was a year and a half.

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As of this writing, we are preparing for Avery to start Kindergarten in fall of 2018. The next big conversation, coming May 2018, will be the “What kind of class will he be in?” talk. Ultimately, the decision is up to me and my husband. Options include a general education class, gen-ed with resource room, a specialized class, and so on.

His teachers assure me that in terms of academic knowledge, Avery is right on schedule. But they’re still, as of now, pushing for a specialized class for kids on the spectrum. While personally, I’m pushing for General Education Kindergarten with resource room time. Again, I don’t want to be a smug know it all and think that his teachers don’t have his best interests in mind, but sometimes I have fears kicking in that he’d going to be stuck in a lower functioning class forever simply because the system wants to make an example of him. That might be my paranoia. That might be real. I’ll probably never really find out.

There are times where I want to get Avery reevaluated. Where I want to rip the diagnosis out of his record, erase the past, and lock the autism away. I want to shrug at strangers, pretend that Avery’s quirks are just that, and brush it off with “Hey, sometimes kids are weird, you know?!”

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Parenting is just an endless tumbling cycle of self-doubt, no matter what level your kid is on. All we can do is put on our best pair of mommy or daddy pants and fight the good fight, knowing how to utilize the tools and resources surrounding us. We can’t crumble. We can’t fall apart. And when you’re a parent, and you know that you love that child more than anyone and anything in the entire universe, fight the battle knowing love is your super power.

Buck up, kids. We’re going to be okay. Just do, as said in The Truman Show, accept the reality of the world with which you’re presented.

It’s as simple as that.

I love you, Avery Stone. You inspire everything I do, and everything I write.

Thank you for being mine.

 

Loryn is happy to answer any question you have about parenting or ASD on Twitter.

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