boy with autism climbing a tree

The Story of 'Not Quite' When You're Parenting a Child on the Autism Spectrum

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I’ve been parenting a child with autism for almost 11 years now. For every one of those 11 years, I could have told you there was something different about this child, but it took almost six to find someone to put a finger on just what it was. The thing about parenting a child with autism is it is a never-ending story of not quite.

In the beginning it was, “Well your son has some delays, but I think he’s just not quite behind enough for it to be anything serious…” When he was 4 a doctor told us his lack of engagement and anxiety was probably depression and he should play outside more.

boy with autism climbing a tree

As he grew, it became harder for others to brush off his quirks with other explanations. Even after his diagnosis, however, we still had the problem of not quite. Now he was not quite ready for a regular classroom, but he did not quite qualify for much in the way of extra help through the school.

Through the years, he has mastered most of the self-care skills he needs, just not quite at the age he should have. At the same time, as his mom, I did not quite fit in with the other moms of children with special needs. One family member even outright told us she just didn’t quite see it.

Those who are the most invaluable to us as a family are those who see my son’s could bes instead of his not quites. The therapists who want to improve what he has rather than declare it good enough or better than other kids on the spectrum. The doctors who want us to have referrals for private therapies he can’t qualify for in school and who help us tell the difference between autism characteristics and other challenges. The nurse and social worker who see the places his struggles are affecting our family and offer resources for solving those issues. The teachers and coaches who mentor him patiently and include him even though he processes things in different ways.

All of these people have seen his could be.

Last year after a long evaluation meeting with a new psychiatrist, she noted one of our son’s strengths is his active and engaged parents. Of all of the invaluable information she gave us about our son’s diagnosis, the most important thing she did was remind me no mater how many people see his not quite, the most important person to see his could be, is me.

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Why the R-Word Is Hurtful, Even When You're Not Saying It At or About My Child

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The second you become a parent, a protective instinct kicks in. Your baby is your whole world, and you would do anything to protect her. You’re a mama lion, and you’ll bite the head off anyone who messes with your cub, directly or indirectly.

As a parent of a child on the autism spectrum, I am on constant high alert. I know the ignorance is out there, lurking in the form of a glaring stranger when my child stims to keep herself calm, or an uneducated youth making an insensitive comment.

This is the indirect harm I am referring to. Insensitive comments can be hurtful, even when your child is not within earshot. This happened to me a number of years ago at work when my daughter was young and long before I had my son . My crew was milling about, waiting for the OK to start our work day. A few of the guys were joking around, calling each other names. One asked, “Why do you call him that?” to which the first responded, “Oh, because he’s [so and so’s] retarded brother.”

I didn’t hear the rest of the conversation or the crude noises made afterward because at this point I was so angry I was seeing red. It may not have been directed at myself or my daughter, but to me it didn’t matter. Language like that is a direct insult to my baby and all individuals like her. I took several steadying breaths, turned around and snapped at them to watch their mouths. There was a momentary stunned silence and a chorus of mumbled apologies, but the damage was done. Not only was I fuming, but I was also devastated. Why would they make such harsh, insensitive comments about people like my little girl?

It chewed away at me for a few hours until I went to my boss on the verge of tears and reported it. My boss was understanding. All involved parties were dealt with accordingly, which brought me a sense of satisfaction, but not a sense of closure. It still hurt. Language like that lead people to believe the differently-abled are sub-human and not worth treating with respect.

With the prevalence of autism and other developmental and intellectual disabilities, it surprises me people still use the word “retarded” so freely. And almost every time it’s used, it’s in a negative connotation. It’s used to insinuate someone is beneath you in lines of intelligence and can’t possibly understand because they are too “stupid.”

The media is worse. In shows like “Family Guy” (which I find myself liking less and less), the R-word is depicted in the worst way — one episode uses it to reference an autistic child in a helmet and protective gear, slurring his words and petting Brian the dog too hard, causing Brian to bite him on the hand. It’s meant to be funny, but in reality it is insulting and demeaning. The writers and creators of the show should be ashamed.

When I hear a young person use the word today, I often then hear, “Oh, they’re young, they don’t get it,” or “They’re just uneducated,” in defense of their ignorant actions. Well, I am sorry, but those are just not valid excuses anymore. The resources available and coverage of advocacy organizations on the news  are plentiful, so there is no reason for anyone to not understand the R-word is hurtful, harmful, and should never ever be used. Period.

You see what I mean about protective instinct?

Image via Thinkstock.

Take the pledge! Sign up to support the elimination of the derogatory use of the R-word from everyday speech and promote acceptance and inclusion.

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What Pokemon Go Taught Me as Someone on the Autism Spectrum

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One of the biggest struggles I deal with when it comes to my mentees who have autism and other special needs tends to be focused on video game “obsessions.” This often means staying indoors for long periods of time without getting much exercise, time outside, or chances for socialization with peers. When I give talks at schools and to parents about growing up on the autism spectrum I talk about how some people with autism get focused on a key interest for a long period. When this happens, it could become their only interest. Video games can become that only interest.

Then out of nowhere Pokemon Go came out, and everything changed.

My mentees, who had loved going on their Nintendo DS to play new versions of the Pokemon game were now downloading this app on their phones and going out to play. It was incredible. Xbox and PlayStation 4 had been put aside for sunshine and exercise.

The more they played, the more positive reinforcement they received every time they were able to catch a Pokemon. They told me the “experience points” they received made them feel good about themselves when they were able to level up. Later, I would learn several of them were meeting with their peers to go to their local parks to hang out and catch Pokemon together.

Growing up on the autism spectrum I loved role-playing video games I’d played on my Gameboy or PlayStation 2. If it wasn’t for my other interests in things such as sports and theater, I could have seen myself being stuck on that activity for even longer than I was.

I downloaded Pokemon Go myself to see what the buzz is about, and I have to say it’s made me feel more positive every time I’ve catch a new Pokemon.

Going forward, I hope I can encourage my mentees in high school during these summer months to consider playing Pokemon Go as long as they have other activities to fill out their schedules.

Through moderation, I have seen this help expand my physical activity and and lower my anxiety. For younger kids on the spectrum, I’d encourage parents to start doing local walks in their areas on weekends with other parents in their schools and neighborhoods to see if there is an interest in starting a “Pokemon village.”

So enjoy the viral sensation that is Pokemon Go! Not everyone is going to love this, but it means the world to some individuals out there.

You can read a version of this blog at Kerrymagro.com.

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When My Autistic Grandson Taught Me How to ‘Fly’

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I am told most autistic kids like order. They place objects in neat little lines and carefully group things together according to size, shape or color.

My grandson, Noah — not so much.

Noah likes the complete opposite of orderly. If he sees a neat little line of anything, it must be destroyed. Every cabinet door or kitchen drawer must be opened.

Every refrigerator magnet must be pulled down to the ground, and every box must be emptied. It seems to be his mission. As soon as he walks into the kitchen, he checks the refrigerator for magnets. They should not be there, and if they are, they must come down — all of them. 

Needless to say, his playroom is usually a mess. It’s almost pointless to try and clean it. We have to clean while he’s asleep and then pray he doesn’t notice when he wakes up.

Having said all that, there are things Noah does that I try to learn from every day, like the fact he’s not a rigid person. He’s actually pretty flexible and goes with the flow. He goes where we go without any complaint, and if his dinner is a little late or his nap time is a little off schedule, he’s OK with it. I like that in a person.

He never throws tantrums; he usually gets what he wants by being patient with us and trying to point or sign. And if that doesn’t work, he will settle on something else. I think we should all be more like that.

He really wants to interact with us; he pulls us to his playroom or hands us his puzzle pieces to play, and he knows we will follow his lead. Another prime example of how adults should live — show someone you love what you want, or need, and then lead the way to get it.

But best of all, when Noah is happy, everyone knows it. He runs in this out-of-control kind of way with his arms raised in front of him like they’re expecting his little legs to go faster (even though they already seem to be going way too fast), laughing and screaming the whole time. It’s like he’s just on the edge of out-of-control, but somehow, against any logical explanation, controlled.

And then, sometimes, while he’s running in this half-controlled/half-uncontrolled race around the living room, he will throw his head back and close his eyes. It’s amazing because he usually rounds the corner without bumping into any walls or furniture. He’s just — flying.

Can you see him?

His eyes closed, his head back, his arms out in front to guide him, running at full speed, rounding the corner as if his eyes were wide open — laughing and flying.

I see it every time I close my eyes at night. It’s one of the most beautiful things about Noah.

I mean, sure, he’s messy and loud and basically noise with dirt on it, but what little boy isn’t?

It’s his reckless abandonment.

His complete lack of fear.

The trust he has in himself to get around the next corner, with his eyes closed, like he’s flying, without a care in the world — that’s what’s beautiful about Noah.

And then I think, I suppose if he can do it, I can try, right?

I don’t know what’s coming around the next corner, and I pretty much feel blindfolded myself. I would love to be able to do that — to fly.

I wonder if we all could feel like that at some point in our lives — that feeling of wanting to fly and just being able to trust in ourselves, in God, and know we can round that corner, blindfolded, and still be all right.

Well, I’ve been thinking maybe we could all learn a lesson from the little blue-eyed wonder boy who seems to be flying around my living room.

Trust. Fly. Close your eyes, throw your head back, don’t forget to laugh and then go for it.

Because he looks pretty happy to me.

A version of this post first appeared on G-Maw and Noah.

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When I Couldn’t Shake the ‘Bad Kid’ Label

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Kids are impressionable, and I was especially so. For years I formed my identity around impressions I got from other people. I figured that what the other kids liked and disliked, I would to.

I also figured what people said about me was true. A lot of kids do. Of course, I was willing to take the things the other kids said with a grain of salt. They could call me dumb, but I wouldn’t really believe it. Just like I didn’t really believe the one kid when he said that if your lips bleed too much, they’ll deflate and turn white (even though the concept seemed to terrify my friend). But as for what adults said — that was different.

To children, adults know everything. I always thought so. So when adults and teachers told me I was a bad kid, what was I supposed to believe? When I felt absolutely terrible about accidentally injuring another girl, they pulled me into another room and essentially interrogated me and told me how horrible I was. I was in third grade when that happened.

And I will never, ever forget being pulled into that tiny dark room. I’m not even sure what that room was for. It seemed to be designed for police interrogations. They yelled at me and told me how terrible I was. How I obviously did it on purpose. How my life would go nowhere if I continued like this.

I was 9 years old.

I was alone in a room with screaming adults who seemed to have no interest in calling my parents to come and help me.

My life going nowhere seemed to be a theme. Years later, in seventh grade, I was forced to listen to my teacher berate me for being a terrible kid who didn’t care all because I mislabeled an assignment after working my butt off on makeup work because I was out sick. He reduced me to tears on multiple occasions. He would tell me I would amount to nothing with my attitude.

All I heard was “amount to nothing.” I had no future. I was a bad kid. So many teachers said it. Of course, my parents disagreed. But they’re my parents and they’re biased, you know? Of course they have to say that. But they were in the minority. So they were wrong.

And, to clarify, I’m not saying I was perfect. I definitely wasn’t. I would have meltdowns where I’d hit and scream. I’d say bad words or push other kids down, particularly when I couldn’t find words to express frustration. I would be late with homework assignments when I got overwhelmed. I wasn’t a little angel, but I wasn’t a little devil, either.

Whenever I had a bad incident, I wanted so bad to fix it. I’d work so hard to try and handle my anger better and to find more appropriate ways to express myself. While I embraced the “bad girl” label in junior high school, it was a lie. Ultimately, I wanted to be good.

But it was the little things that made it hard. Even if I hadn’t had a bad incident in months, the teachers would treat me differently. They didn’t have to say it out loud — it was clear they saw me as the bad kid.

During my early years in college, I would’ve chuckled and told you I was a bad kid when I was younger. Then I really started to think about it, and I realized that was wrong. I took a child psychology class where we learned to never tell a child they’re a “bad child.” You may say they’ve done bad things, but they were a good child and they should show it. Where was this attitude when I was a child?

Where were the people telling me I was, and could be, a good girl? My parents were the only ones. I wasn’t a bad kid. I did bad things on occasion, sure.

So there’s a lesson to anyone reading this. Doing bad things doesn’t make you bad. It doesn’t mean you can’t do good things, too. So don’t let anyone tell you otherwise.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

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I Still Carry My 5-Year-Old Son

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I still carry my son.

He wraps his legs and arms around me and buries his head into my shoulder, sometimes raising his eyes just enough to watch what is happening behind us.

Jen holding her son

I am a rather petite woman. My son is nearly half my size. We get a lot of strange looks walking into elevators, stores and restaurants.

Sometimes someone will smile at me and ask, “How old is he?”

“Almost 5,” I’ll answer, as their eyes widen slightly. Then I kiss his head, smell his little boy hair and hold him even tighter.

Sometimes I catch someone rolling their eyes or even remarking I’m spoiling him. Maybe I’ll explain my beautiful boy has autism. Maybe I’ll ignore them. Maybe I’ll cut my eyes at them in a way only a special needs mom can.

My son is a “runner.” My son is impulsive and often has little regard for danger. He gets uncomfortable in new or unexpected situations, and when I’m carrying him, he’s less likely to melt down. He won’t jump, he won’t yell, he won’t stim. He’ll dig in and hold onto me even tighter. He feels safer when I carry him. I carry him for him.

woman holding her son Though if I am honest, I carry him as much for myself as I do for him. I carry him because I still can. I can protect him for just a little while longer from this outside world that isn’t made for him, that isn’t easy for him.

The overwhelming fear of not being able to keep him safe from physical harm, from emotional harm, from judgment and from misunderstanding keeps me up at night. It takes my breath away in the middle of the day. It makes me shake my fists and it brings me to my knees.

If I knew, without doubt, I could keep him physically and emotionally safe forever, I would lift weights until I was 80 so I could keep carrying my 50-year-old son.

I know this behavior physically can’t go on much longer – my body won’t be able to handle it. Pretty soon, we will have to figure something else out.

But for now, I’m going to carry my boy everywhere I can and anytime I can because he needs me to – and because I need to.

I’m just not ready to set him down yet.

 

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