Christy Savely's grandson, Noah

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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Jen holding her son

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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Pokemon Go Gets My Son With Autism to Play Outside

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I have never been into Pokemon. I was an adult when Pokemon came out in the 1990’s, and I remember hearing about and seeing kids play it, but it never really interested me.

Twenty years later, Pokemon is an empire with followers who are as loyal and ardent as any “Star Trek” or “Doctor Who” fans.

And though it still doesn’t really interest me, the Pokemon Go phenomena has caught my attention.

Pokemon Go is a new game, available as a free app for download on smart phones, which encourages people to get outside and find the Pokemon creatures. Here’s a better explanation:

In simple terms, Pokémon Go uses your phone’s GPS and clock to detect where and when you are in the game and make Pokémon “appear” around you (on your phone screen) so you can go and catch them. As you move around, different and more types of Pokémon will appear depending on where you are and what time it is. The idea is to encourage you to travel around the real world to catch Pokémon in the game.

This game is what is called augmented reality (AR), using smartphones and tablets to project an image related to the game into the background of whatever you are looking at, via the tablet or phone screen.

My son had a “Jurassic World” AR app which projected dinosaurs into our living room (at least on the tablet screen). He loved seeing T-Rex looming over our couch and triceratops sitting in front of our TV.

Pokemon Go is also a location-based game, meaning the more the players move around, the further ahead in the game they can get. It is like getting ahead by moving around the Monopoly board, except on your neighborhood streets.

It is unlikely I would have done this for my own entertainment, but what about using it to get my son out of the house every day, even just for short walks?

Bingo.

While he had not heard about the app, to my surprise he was well versed in Pokemon. He knew what Pokemon were, how to capture them, and with his prior AR experience, took to the game as a proverbial fish to water.

The boy who fantasized about his whole summer being in front of his computer was voluntarily outside walking around.

I set up the game so it can’t access things I don’t want it to, and I walk with him to make sure he does not trip or injure himself while playing.

We have seen others out and about on the hunt in our otherwise sleepy neighborhood — kids with their tell-tale phones in hand, stopping to look around them, looking at the phones, and then moving on.

We stop, say hi, share our experiences, and then continue the hunt.

He commented regularly how it would be more fun if he were hunting dinosaurs instead of Pokemon, but he also showed clear signs of enjoying himself. His being willing to leave the house was a huge sign, and to me a big deal.

Thanks, little pocket monsters.

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Why I Don’t Believe in the Term ‘Behaviors’ as the Mother of a Son With Autism

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I’m frustrated about a word: behaviors. Many of you may know what I’m talking about and are probably nodding your heads as you read this. You see, if behaviors are mentioned to you by a teacher, therapist, counselor or a parent, it’s probably not for a good reason. You may have heard remarks similar to the ones below:

We’ll work on his behaviors. Here’s our plan …

I don’t understand all these behaviors. What do you let him watch on TV?

His behavior is escalating.

And my favorite of all time: “What’s wrong with him? He’s never acted like this before!” My answer: “Nothing is wrong with him. He has autism and is frustrated/tired/overwhelmed, and so am I because I don’t know how else to explain this to you. But nothing is wrong with him.”

I don’t believe in the term “behaviors.” I don’t really believe in the idea of a behavior plan. I think it’s demeaning and inaccurate. My son is communicating, but people aren’t listening. And the technique of using candy to “teach” him to react in a way that the neurotypical world deems more appropriate creates a Pavlov’s dog scenario. My son is not a dog.

Do I want him to run out of a room crying because he is so upset? No. Do I want him to yell “shut up” to an authority figure? No. But I don’t think these are “behaviors” in the mainstream sense of the word. My son’s actions have meaning. He’s frustrated. This is the only way he knows how to communicate in that moment. For him, it’s fight or flight because he’s overwhelmed, having sensory overload or doesn’t understand an assignment. It’s a combination of things. Even he may not know the reason, but there’s a reason.

Over the years, I’ve been told to scold him. I’ve been told to take away privileges and give him consequences. For what? For becoming overwhelmed, scared and panicked? Because four hours after the event, the consequences mean nothing. And with moderate autism, sensory processing disorder and severe ADHD, the impulse control isn’t there. I won’t punish him, but I’m sorry he felt that way. I’m sorry he was so immensely upset that he acted out physically or lashed out verbally. My heart breaks for him in that moment because as a mom you want to prevent pain, fix it and make people understand.

When he says “I can’t do it” or “I give up,” it’s because the concept is hard for him and he’s panicking. When you add all the sensory stimulation, it’s a recipe for a meltdown. A meltdown is not negative, attention-seeking “behavior.” It’s his physical body and mind imploding and beginning to shut down from total and complete suffocation — he’s trying to escape to survive.

At that moment, he feels like he can’t do it. He doesn’t understand what’s going on or has some problem he can’t express. He doesn’t want to have a meltdown. His behaviors aren’t something to “deal with” or “get under control” — they’re something we should try to understand.

His feelings are important. He is asking for help at these moments. A break. A time out. An escape. An explanation. Reassurance. A way to help him de-escalate. A hug or other physical outlet to free him from the fight-or-flight feelings that are taking over.

I believe my son’s behavior is communication. We all need to start listening better.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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How We Helped My Brother With Autism Cope With Our Grandfather’s Death

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For John, my younger brother with autism, death is his biggest fear. He’s afraid of what will happen when to him after Dad, Mom, Joe (our older brother) and I die. We’ve tried to assure him he will always be taken care of either by a family member or by the state. But his fear of the unknown frightens him to tears.

Throughout John’s life, family members have passed away. Since John hardly knew them, their deaths were sad but not emotionally impacting. But this all changed after Grandpa died in April 2015. This was the first death of a close relative. Through our experience with our grandfather’s death, our family learned how to help John cope with death and grief.

1.
 We were careful of what we said.

Grandpa died as a result of compilations from a fall. From the time of the fall to his death, we watched everything we said about the situation. With John’s intense fear of death, we didn’t want John to hear the details of Grandpa’s fall. He knew Grandpa was in the hospital, but that little information deeply affected him.

We decided to share as much information about Grandpa as possible outside of our home or when John was in school, at a friend’s house or when he was asleep. If information had to be shared when John was around, we would text, go to another room or speak in Spanish (John isn’t fluent in Spanish).

2. We monitored our mourning.

From the day of Grandpa’s death to the day of his funeral, we kept a close eye on our mourning. Mom didn’t want John to be more upset than he already was. We did cry in front of him to show him crying is a normal part of mourning. But we did our best not to lose control of ourselves. The last thing we wanted to do was to make John even more afraid of death.

As difficult as it was for us, it was even more difficult for John. He was trying to make sense of what was happening, as well as dealing with the multiple feelings brought up by Grandpa’s death.

3. We encouraged John to ask questions.

To help John cope with Grandpa’s death, we told him if he had any questions, we would do our best to answer them. By allowing John to ask questions, we felt it would help him understand and better deal with the grief of Grandpa’s passing.

Two days after Grandpa’s death, John felt ready to ask questions. The questions varied from “Why did Grandpa have to die?” to “What will happen to me when everyone dies?” This a hard conversation to have, but it helped him cope with the deep loss he felt.

4. We allowed him time to cope.

Two weeks after the funeral, Grandpa’s headstone was installed at the cemetery. The family went to go see it. I asked John if he wanted to come. All he said was, “When I’m ready.” We left it at that.

Later, on the first anniversary of Grandpa’s death, John went with us to visit him. After looking at the grave, he rushed back to the car and stayed there until we left. The reality of Grandpa being under the ground was too much for him. I give John credit for going to the cemetery and facing his fear.

5. We let him know he’s safe.

John went to the cemetery because he felt safe. He knew if he had an issue there, we would help him work through it. Before John could feel safe, he needed to feel he could trust us. It took many years to build up the trust John has with us. Now he knows he can come to us with a problem, and we will help him.

We have no control of what will happen tomorrow. That’s the cold truth. Currently, we’re taking legal steps to ensure John will be protected, whether it’s a family member or the state.

There’s no easy way to talk about or prepare for post-death arrangements, but we need to prepare for the inevitable.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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