When I Thought My Son With Autism Was Stuck in a Bouncy House

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It had been a long, long winter in Boston — three major snowstorms in the space of three weeks. Fortunately, my family and I were lucky enough to escape to Florida for six days during a February vacation.

As we wandered under the palm trees along the Miami harbor, we delighted in the strong sun beaming on our arms and faces. We turned a corner and came upon an outdoor arts festival — complete with an enormous kids’ area with bouncy houses, bungee trampoline and a zip line. Kid heaven!

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Navigating a tightly packed venue like this one often poses a challenge for my son. He has autism; the loud noises and physical closeness of a crowd can overwhelm his senses. When we came across an inflatable obstacle course right in the most crowded area of the park, I wanted to run the other way. However, this was the attraction that seemed to be appealing to my son, so I gave him the “go ahead” signal.

From the moment he wiggled into the first tunnel, I felt nervous. At each turn, there were walls to climb, barriers to slide under and hurdles to pass over. What if he gets stuck? What if some bigger kids come in and try to push past him? What if he gets turned around and can’t find his way out? As much as my son’s social and physical skills have improved over the last several years, I felt uncertain about his ability to hold it together if he got stuck, pushed or lost.

As I stood on the outside looking in, I forced myself to breathe. I was able to catch glimpses of my son as he made his way through each twist and turn. He had a huge grin on his face as he successfully made it past each rubbery hurdle

He was about 20 feet from the exit when he came across a little blond girl, who appeared to be about 3 years old, standing in front of a wall. The little girl was blocking his path, and my son looked uncertain about how to proceed. “Say ‘excuse me’,” I coached.

“Excuse me,” he parroted, then slung his exceptionally long leg over the wall and hoisted himself to the other side without breaking a sweat. Instead of continuing towards the exit, he stood immobilized. That’s when it hit me. I was misreading his uncertainty.

I have a habit of viewing every new encounter through the lens of my son’s disability. I’m aware of the social, physical and sensory challenges inherent in every new situation, and I try to troubleshoot as best I can so my son can be successful. I’m on the lookout for situations where he’ll need an extra boost, a helping hand or some subtle support.

That’s not what was happening here. My tall, lanky 7-year-old was standing on one side of an inflatable wall peering down at a teeny little girl who couldn’t reach the top even if she stood on tiptoes and extended her arms as far as they would stretch. On second glance, I noticed tears beginning to form in her little blue eyes.

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“Uh oh,” I said to my son. “This little girl needs your help. She can’t get over the wall. Stick out your hand.” He leaned into the wall and stuck out his hand then looked to me for further instructions. “Tell her, ‘Grab my hand!’”

“Grab my hand!” he repeated in a cool, confident voice. The little blond girl reached up and grabbed for dear life.

“Now pull!” I instructed. He gave one big tug and up she came. She landed firmly on her feet, gave us a wave and bounced off towards the exit.

My son has autism. He’s often the kid who needs some extra help. He’s often the kid who needs instructions broken down for him or modifications to his environment.

While the autism is always a part of him, sometimes he’s just a kid. Sometimes he’s just a big, tall kid reaching out his hand to help a little kid over a wall.

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To the Mom at the Pool Holding Her Son's Hand

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I saw you.

I saw you hold your son’s hand. He looked about 11 or 12. That was my first tip-off. Most boys that age won’t willingly hold their mom’s hand in public.

I saw you checking out the hotel pool, scanning it for potential triggers. Searching for the best place to set up camp for your family — closest to the exit, plus closest to the pool.

I saw you prompt your son into the water, or as close as he could manage at first. His hands over his ears, he managed to sit on the side with his feet in. I saw his eyes squinting tight, but after a while, he relaxed. His hands never really came down off his head, but relaxing, he flapped them from time to time.

I watched you, your husband and your daughter all get in the pool and stand around and in front of him, forming a sensory shield. All smiling. But I noticed you, Mom, still scanning the scene, ever watchful.

I gave you a big smile. I know my tribe. I wanted to swim over and fist bump you or give you a high-five. Of course, I had my own son to keep eyes on. Plus, I never figured out a good opening line when I spot another autism spectrum disorder (ASD) family. “Flap here often?” isn’t so smooth. I could only hope you saw my smile that was just that, a smile. Not condescending or with pity. I just wanted to acknowledge you.

I saw you the next morning at breakfast. You “opened the joint” like we do. I smiled and wished you all a good morning. I overheard your son ask quite anxiously, “What time is it?” to which your husband replied quite wearily, “It’s vacation. It doesn’t matter what time it is.” I heard you sigh. You knew how it mattered but you also knew how your husband felt. Doing that dance of trying to keep the peace.

I hope you had a good vacation. Maybe it’s not the type of vacation others would enjoy, but for your family, it was great. I wish I could’ve told you how nice it was to see one of our own. That just seeing you and your family made me feel less outnumbered by the “typical” families around me. I wish we ran into each other more. Maybe we would’ve thrown our heads back and laughed at a joke only we could understand. Maybe somehow you’ll see this blog and realize you weren’t the only one at that resort with autism in your life. I hope you and I find more of our own wherever we go. To keep us company. To help and support. To sound off and give advice.

Maybe even just to share a side of fries.

A version of this post originally appeared on Autism With a Side of Fries.

The Mighty is asking the following: Share a travel moment related to disability and/or disease that made you laugh, cry, roll your eyes or was otherwise unforgettable? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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38 Signs You Might Be an Autism Parent

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Raising a child on the spectrum comes with its own set of rules, its own set of challenges and its own reasons to celebrate. So the Mighty asked its readers on Facebook to fill in the blank: You might be an autism parent if ___. Their answers made us laugh, cry and nod our heads in agreement. Take a look at a few of our favorites below, and add your own to the comment section at the bottom.

You might be an autism parent if…

 

1. “You just tucked your child into her closet instead of a bed because that’s where she’s most comfortable sleeping.” Kate Systma

2. “Every conversation seems to always include some video game character reference. Always.” What Will This Day Bring?

3. “Caffeine is a necessity.”Elaine Southern

A quote from Elaine Southern that says, "Caffeine is a necessity."

4. “The majority of your adult conversations are with your kid’s therapists!”Stumbling Across the Spectrum

5. “You know the name of every engine from the island of Sodor, and you can tell them apart from across the room.”Michelle Alkon

6. “You bring every kind of snack imaginable with you to any outing because your child is nonverbal, so you don’t know what he’s going to want to eat.”Hilah Swidler Marca

7. “[Insert movie name] is on repeat for the 637,345th time that day…”Jamie Rankin

A quote from Jamie Rankin that says, "[Insert movie name] is on repeat for the 637,345th time that day..."

8. “Your house looks like a classroom with all the visual schedules and learning posters everywhere.”Jen Lynch

9. “Your kid tells you ‘happy birthday’ on Mother’s Day. Close enough.”Leidy Jesse Garcia

10. “You call the entire family to celebrate your child eating a new food, like it was a national holiday… because let’s face the truth: it kind of is!”Tabitha Hodges

11. “Every new word seems like a tiny miracle.”Whittany Keating

Quote from Whittany Keating that says, "Every new word seems like a tiny miracle."

12. “Your son can’t rest until he knows what kind of car your new friend drives and has seen and touched the key. And he will remember three years from now what kind of car it is.”Jennifer Hollis Behlmann

13. “You have enough copies of parental rights from IEP meetings to wallpaper your house.”Marisa Ulrich

14. “You wear your autism mom shirt so when you go in public and have to bring him in the bathroom with you, you don’t have to explain it 20 times…”Anita Soto Russell

15. “You live on high alert constantly.” Penelope Hamilton

Quote from Penelope Hamilton that says, "You live on high alert constantly."

16. “You wipe out a shelf of macaroni and cheese because the kiddo will only eat the shapes kind (not the regular) and you’re afraid they’ll stop making that kind.”Mary A. Wilson

17. “You’ve emailed Nabisco when they stopped making one of the five things your child eats and offered them an arm, a leg or an organ to please for the love of God start making said snack again.”The AWEnesty of Autism

18. “You feel like a war survivor after a trip to the grocery store.”Bre Sapp

Quote from Bre Sapp that says, "You feel like a war survivor after a trip to the grocery store."

19. “Your daughter’s toothbrush is always in the same spot and facing the same direction on the bathroom sink.”Alisha Roach

20. “You must take the same exact route to school every day because if you turn on a different street, it will get ugly.”Kathy Macias Araiza

21. “Small accomplishments are huge accomplishments, like your teenager learning how to walk home from school all by himself!”Lauren Jordan

Quote from Lauren Jordan that says, "Small accomplishments are huge accomplishments."

22. “You have a hanging therapy swing and trampoline in your living room.”Melissa Cote

23. “You have a sign with a picture of clothes taped to the patio door to help your nonverbal son remember to wear clothes outside while playing…”Dawn Dierking

A sign that says "Wear Shorts Outside" and as a picture of a pair of black shorts with a yellow stripe and pairs of black, red and blue underwear

24. “Waking up at 6 a.m. is considered sleeping in.” –Priti Patel

25. “You buy your almost 11-year-old daughter a teen magazine and a bra and a baby doll stroller and ‘Backyardigans’ DVD in the same outing.”April Charisse

26. “You have to eat at [insert restaurant name] every Tuesday and make sure there is a [insert restaurant name] where you vacation.” — Jodi VarKonda Weldon

27. “All ‘usual and customary’ child rearing rules and guidelines are subject to suspension and revision on an hourly basis, as needed to adapt to the ever-changing functional ability of your child.”Cyndi Graves

A quote from Cyndi Graves that says, "All 'usual and customary' child rearing rules and guidelines and subject to suspension and revision on an hourly basis, as needed to adapt to the ever-changing functional ability of your child."

28. “You go to the library Monday, grocery store Tuesday, YMCA Wednesday, recycling Thursday and eat pizza Friday. Every week.” Tyann Sheldon Rouw

29. “The big huge gate that cost $2,300 was not to keep people out but your child in!”Anna Donald

30. “You have a broken iPad, three broken iPhones, one broken TV…”Rebecca Guyot

31. “You turn every activity into therapy.”Sarah Dickson

32. “You give your principal pep talks on interacting with your kid.”Jacqueline Patterson

A quote from Jacqueline Patterson that says, "You give your principal pep talks on interacting with your kid."

33. “You celebrated when the teacher reported that your son said ‘damn,’ and it was in context, too.”Karla Needham Bryan

34. “You stay awake every night worrying about the future and who will watch over your child when you’re gone.”Raelene Beruschi

35. “You have emergency stashes of Oreos cookies that must be in groups of four because having four Oreos in his hand is only way your getting your kid to school these days, and you don’t really care what anyone thinks about it.”Tracy Waugh Antoine

36. “You secretly celebrated when your child told a lie.” — Luna Mireles

Quote from Luna Mireles that says, "You secretly celebrated when your child told a lie."

37. “You can read a look in the eye, a posture, a tilt of the head, a facial expression or a vocalization and know exactly what frame of mind your child is in. Those brief, infrequent moments when you actually connect eye-to-eye, soul-to-soul are never forgotten but remembered for a lifetime.”Shelly Boeve

38. “You know how much your child loves you without them being able to tell you. You celebrate what others wouldn’t have noticed. Their sibling is the most accepting, non-judgmental person you know. Life is completely different to what you expected, challenging and often difficult, yet still amazing.”Gemma Bryan

A quote from Gemma Bryan that says, "You know how much your child loves you without them being able to tell you. You celebrate what others wouldn't have noticed. Their sibling is the most accepting, non-judgmental person you know. Life is completely different to what you expected, challenging and often difficult, yet still amazing."

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What the 'Looky-Loo Stink Facers' In the Grocery Store Are Missing About My Son

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There we were, walking trough our local grocery store, picking up our usual household necessities. Well, I was walking — my boy was riding in the cart. The trip was going fairly smoothly, and a then a lady asked, “Is he deaf?”

I wonder what clued her in that my boy was “different.” Could it have been that he’s 7 years old, weighs 90 pounds, and is still riding in the grocery cart? Or maybe it’s that he was squealing at a level that made the wine bottles shake? Perhaps it was all that finger-flicking and hand flapping that gave it away. (Just between you and I, I think she may be the next big mystery solver! Scoot over Sherlock, this lady’s gunning for your job!).

My response was, “No, he’s autistic.” She just smiled, nodded her head, and walked away. A few years ago, a comment like that one, would have either offended me or sent me to the car in tears because it meant that people could obviously tell that something was “wrong” with my boy.

Now, a question like that doesn’t really bother me. I just look at it as natural curiosity. I’ll take a genuine curious question any day over a judgmental, ignorant comment, or worse, the “stink-face stare.” You know, the look people give without having to say a word? The “That kid needs a spanking,” or  “Kids nowadays, no discipline I tell Ya” look.

Those are the worst. Well, there was none of that, until checkout time. Now normally, this is when we’re almost home free.

Not today.

When my boy is good, he gets to pick out one thing. Today, that one thing was fruit flavored Tic-Tacs. “Deal!” I said. They’re cheap, low-cal, and best of all, don’t make any friggin noise. Everyone’s a winner!

And then — He dropped one. One. As in the singular. One friggin’ Tic-Tac (Insert dramatic screeching car crash sound here. Throw in a bomb exploding while you’re at it.).

He immediately started freaking out.

I looked as quickly as I could to try and find that Tic-Tac, and no luck. And to all the “perfect” little mommies that are reading this wondering “Gasp! Was she going to actually let him eat that tic-tac?” To avoid a code red meltdown? Damn right I would.

Autism parents are always in survival mode. And in the case of a very quickly progressing meltdown, we will do just about anything we can to avoid it escalating to a full on code red. Even if that means letting him eat a dirty Tic-Tac. Or at least this Autism mom would.

Any of you that disagree with this, can feel free to call me at 1-800-You-Do-You, and If that number doesn’t work, try 1-800-Ima-Do-Me!

The lone Tic-Tac was never found. My boy went into a full on meltdown.

He screamed and flailed his arms about from the time we paid to the time we walked through the front of the store, out through the doors, into the car and the rest of the way home.

mother and her son

All while, yes, the “looky-loo stink eyes” were being given. Sigh.

By the time we got home, he had managed to calm himself down. I was an exhausted wreck that now had an eye-twitch (Just kidding).

You know, I wish I could tell any “newbies” (newly diagnosed parents of ASD children) that it gets easier, but the truth is, it doesn’t. As time progresses, you just learn to deal with things better. You’ll learn to bounce back quicker from the rough spots. You’ll learn that everyday will bring it’s own new challenges. You’ll learn what works best for you, what works best for your child, and that all you can do is the best you can do.

And most importantly, you’ll learn that none of us have it all figured out. To put it simply, Autism is O.T.J.T (on-the-job-training)!

You’ll learn that most people really are genuinely curious and just don’t know what or how to ask about your child. And as for the others, the “looky-loo, stink-facers?” You know what, they saw one moment, one struggle, one meltdown, one glimpse into a life they know nothing about.

They don’t see the amount of work, effort and love that get’s poured into your kid.

They didn’t see the first time he finally looked at you when you said his name.

They didn’t see what a big deal it was the first time he held a spoon correctly even though he’s 7 years old.

They didn’t see the first time he initiated “play” with a friend.

They didn’t see the first time he said, “I love you” using his iPad.

But you know what? They don’t deserve to! Those special moments are magical. They may have seen a brief moment of the madness, but they do not deserve to see the magic.

The magic, well that’s reserved for you, and at the end of the day, the magic is worth the madness.

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The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Great Divide Within the Autism Community

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My daughter was diagnosed in August, right before she turned 2 years old. I did everything on the pamphlet that the neurologist gave me when he said, “Your daughter has autism spectrum disorder.”

I told my family she was already receiving Early Intervention, but we were now going to be getting much more, including intensive in-home therapies every day. I was praised and commended for being her advocate and getting her diagnosed early.

The pamphlet mentioned finding a support group; I looked and found none. I turned to the internet to find moms and dads like me. I knew I wasn’t the only one needing to talk it out and talk with people who get it, people who are living it, just like my family.

What I didn’t know was that there’s a great divide in the autism community. I didn’t realize that not only would I advocate for my daughter, but Id also have to explain how and why I advocate for her the way I do.

I see this great divide every day. I try to steer clear of it because I have a job to do. I am a mom, caretaker, wife, advocate, and a person living with autism. No, I don’t have autism… but my daughter does. I change her, not knowing how long she will be in diapers. I keep her safe by bolting furniture and keeping all doors and windows locked. My kitchen chairs have been on top of my kitchen table for almost a year. I take her to every appointment, and there are many. I sit down on the floor every day during her therapies so I can take it all in and learn it so I can teach her when her therapists aren’t here. Her needs come before mine and I gladly make it that way. I have a job to do!

I am an autism mom. Autism came in to our house when Zoey was 14 months old, and it didn’t just change Zoey’s life, it changed all of us. I’ve become her voice, caretaker, teacher and advocate. I’m living it with her, her sister is living it with her and her daddy is living it with her. It affects us all. We’re her support system.

So it baffles me when I see heated discussions in the autism community:

“You can’t call yourself an autism mom.”

“You don’t get it because your child is high-functioning”

“You don’t get it because your child isn’t severe”

“Don’t call me an Aspie.”

“I refer to myself as an Aspie.”

“No labels.”

“Accept it, he or she is autistic.”

I’ve watched the fighting and I’ve seen people get mean and nasty. It’s sad.

A child with autism has a different journey and path than that of an adult with autism. Each person with autism is on his or her own unique and beautiful path. Who is anybody to judge how a person advocates for their young child, or how someone chooses to advocate for oneself?

Don’t we all want the same thing in the end?

Awareness. Acceptance. Love.

We need to accept that “if you’ve met one person with autism, you’ve met one person with autism.”

We need to accept each path and journey will be different, and the great divide isn’t helping. Everyone has their own story and how they choose to tell it. If we as a community can not accept one another, how can we ask the same from others?

Follow this journey on the Facebook page Life With Zoey.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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12 Parenting 'No No's' I Allow Because My Son Has Autism

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My son has severe nonverbal autism. Because of that, my parenting style is probably totally different than if I had a neurotypical kid.

It got me thinking about all the things I allow my son to do that most parents usually tell their kids not to do. Some of these I encourage my son to do because it’s a typical thing kids do. Some of these I let my son do because I pick and choose my battles. And some I let him do because of the limitations from his disability.

So here they are, in no particular order.

1. Eating with his hands. 

This is a combination of picking and choosing my battles and adjusting my expectations due to Kyle’s fine motor issues and major eating issues. When your kid doesn’t eat very well to begin with, as long as he’s getting it down I don’t care if he uses his hands. This might change in the future, but for now this is a battle not worth fighting.

2. Running in the hallway. 

I always see parents or teachers tell their kids to stop running in the hallway and I think, “Why?” But seriously, the school where Kyle gets his music therapy on Saturdays has a big wide, long hallway to his classroom that’s perfect for a fast run. So while all the other parents are telling their kids to wait, I’m dragging Kyle by the hand saying, “Let’s run, let’s run!”

I’d just love to see him run somewhere with a sense of purpose instead of his usual meandering around. Plus I like to run. I run marathons (very slowly) and would love to somehow get Kyle involved in the running community.

3. Splashing in the tub or pool.

It’s a right of passage for kids to splash around in the tub. So what if water gets all over the floor? That’s what towels are for. And the pool?! That’s what pools were meant for…  Splashing! Why are all the nuerotypical parents discouraging splashing? What am I missing? Did I miss the memo? I’m the one dad in the pool who’s splashing water in my son’s face. I must look like a big jerk.

4. Eating breakfast for dinner. Or popcorn for breakfast. Or spoonfuls of jelly for lunch. 

Again, my kid has major eating issues and he lost weight a year back, so when he’s hungry he gets what he wants and that’s it. Other ASD parents know what I’m talking about. There’s another autism blog called Grape Jelly On Pizza. She knows what I’m talking about. I’ll give my kid a multivitamin to make up for the lack of nutrition.

5. Getting dirty on the playground.

Every time I take Kyle to the playground I overhear at least one parent say, “You’re getting your pants all dirty!” What?! This is what playgrounds are for.

6. Watching TV during meals.

It’s not allowed for every meal, but again, you’ve got to pick and choose your battles. If having a show on will get him to eat more, then I’m putting a show on.

7. Drinking coffee. 

What can I say? My kid loves coffee. Is it good for him? Probably not. Is it going to irreparably harm him? Probably not. So when Daddy is drinking a cup in Kyle’s vicinity, Kyle’s most likely getting half. And if I can use coffee as a reinforcer to get him to eat other things, then that’s much better. I love coffee.

8. Not eating at the table.

We try to get Mr. Kyle to at least eat dinner at the table, but breakfast is a walking around and grazing meal.

9. Jumping in puddles.

Back at the playground I hear parents yelling, “Don’t jump in that puddle!” Meanwhile, I’m on the other end of the playground trying to teach my kid how to jump in a puddle.  Jumping in puddles is a right of passage, a part of growing up.

10. Talking too much or too loudly. 

My kid is completely nonverbal, so if and when he decides to start talking he can talk whenever, wherever, and as loud and as long as he wants to.

11. Sitting in the cart at the store.

We’ve been pushing him to walk more lately, and he’s been doing pretty well, probably partially due to his service dog and partially due to his school going on community trips every two weeks. But if we need to get in and out of Target quickly, or if Kyle is having a bad afternoon, I have no problem stuffing my 8-year-old into the cart and giving him a bag of popcorn and a book to keep him happy. Recently, we were in Costco and we were leaving a popcorn trail behind us throughout the store.

12. Jumping on his bed.

I can remember just a few years back when Kyle didn’t know how to jump and they would work at it in his physical therapy sessions. Now, he’s a jumping machine. And we encourage it. He’s got a trampoline in the backyard, a mini trampoline in his play room and he also uses his bed like a trampoline. If he grows another few inches he’ll be hitting the ceiling when he jumps on the bed. But we will allow it until the bed breaks or he hits his head on the ceiling… whichever comes first.

Those are my 12. I’d love to hear yours.

A version of this post originally appeared on Autism Daddy

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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