To My Son's Autism Therapists

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Hi Therapists,

I feel like I know you all pretty well now. You’ve been in my home with my son for almost a year. Four, five, six days a week you’re here. You’ve seen me in my pajamas, watched me do laundry and cook dinner. I spend more time with you than I do with my friends or family. We chat, I sit and listen to the sessions, I ask questions.

But mostly, I watch. I watch you and my son, try to soak up what you’re doing, gauge what works and what doesn’t. This is your job, but this is extremely personal to me.

I know you went through a lot of training for this job. Some of you have advanced degrees and letters after your names. You speak in acronyms, take data and analyze my son’s behaviors. You are competent and knowledgeable and educated. You are able to develop lesson plans, implement them in effective ways and move my son from skill to skill. You are great at your job.

But I wonder if you know what it’s like to be me. I wonder if you have given any thought to what it’s like to parent these children you work with every day.

I’ll tell you that as a parent, it’s tough to get your head around that fact you have a child you can’t help. We special needs parents are forced to rely on others to provide the tools our kids need to reach their potential. Here. I am handing you over my heart and my soul, my absolute everything. I don’t even understand exactly what it is you do, but please make it your best. Please help my child. It’s debilitating, really. You can help my son and I can’t. I wonder if you understand the importance, the weight of this.

I wonder if you know how much of a toll this takes. Did they mention the tremendous strain parents are under during all that training? We’re fragile. We’re scared. We’re struggling. We’re hopeful. We’re grateful. We’re tired.

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Do you know how much we have to fight for our kids? The biggest surprise to me in this special needs parenting world was how much I have to advocate for my son to people who should be on his team. Schools, therapists, doctors, insurance – you name it, it was probably a battle. Do you think I don’t know that you roll your eyes when I call? I do. Trust me. I would rather be the fun mom, the awesome mom, the mom everybody likes. But my son can’t afford that mom, so I am the mom who gets him what he needs. It takes an awful lot out of me, and some days, I don’t greet you at the door with a lot of energy. What you might think is crabby is really just empty.

Your training should have included how much this therapy costs. I’m sure it didn’t, but I’d like you to understand the sacrifices we’re making to pay for all of this. You are worth it, I have seen it with my own two eyes, but it means we cut and save. Instead of a vacation, we pay for medical bills and insurance premiums. I work from bedtime to 2 a.m. so I can stay involved with what you do when you’re here, in my home. So I can be a part of my son’s progress.

I wonder if you know that placing this responsibility in someone else’s hands is terrifying. You are tasked with seeing my child’s potential, reaching through thorns and brambles, through cuts and scratches and bringing all that potential to the surface. You are tasked with nothing less than changing my son’s life. This might be the most important thing you ever do.

I want you – no, I need you to understand this. I need you to understand that every morning I wake up and hope for a breakthrough, and that every night I go to bed worrying about my son’s future. This is a lot of weight to carry. I have handed you a small portion of that weight. I need to know your shoulders are strong enough to carry it.

Sincerely,
Becca

This post was originally featured on Sincerely, Becca

The Mighty is asking its readers the following: Describe a time you saw your (or a loved one’s) 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. Check out our “Share Your Story” page for more about our submission guidelines.

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10 Ways I Parent Differently Because My Child Has Autism

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A few days ago, I was talking with a couple of colleagues at school.  One of them teaches a class with a little girl who has autism, and she was thrilled because the girl actually came up to her and tattled on another child.  She was just so happy to see her engaging in conversation and speaking up for herself.  This led us into a conversation about how we approach children with autism differently from neurotypical children.  By the way, when I use the word neurotypical, this simply means people who are not on the autism spectrum.

This led my colleague to ask a question I think many are wondering but are afraid to ask: “What’s it like to raise a child who has autism?” I thought I might try to answer her question here. Please know I can only speak for my own autism parenting experience, because each family has its own unique set of circumstances. There’s a saying in the autism community that if you’ve met one autistic person, you’ve met one autistic person. I know many children on the spectrum can display much more severe behaviors than what we deal with on a daily basis.

So, with that disclaimer, I give you…

10 Ways I Parent Differently Because My Child Has Autism

1. I let my kid jump on the bed.

… Or at least I did before we bought him a trampoline. I learned when Ben was very young that he needs to move — all the time. In this same vein, I never take away his physical outlets as a consequence. Ben has sensory needs that need to be met. If left unchecked (as in, if he sits too long without a motion break), he can become overstimulated or anxious, which can lead to intense emotions.

Jumping helps. So does crashing into a mat. So does swinging. And yes, we have an indoor swing in the playroom for this very purpose. Many neurotypical children enjoy swinging, jumping and crashing. For Ben, it’s as necessary as eating, breathing and sleeping.

2. I pack him the same lunch every day.

Yes, I want my child to have variety in his diet as much as the next parent, and we do encourage him to try new foods as much as possible. However, there are only a limited number of foods Ben will eat. Part of this is because he’s bothered by foods with texture. Part of this is because he likes routine and consistency. This is why he requests the same cereal every morning when he gets his breakfast at school. God bless the cafeteria ladies who save his favorite flavor of juice for him when they’re running low. This is also why I pack him essentially the same lunch every day. We’re working on the food thing as best we can, but it’s not easy, so yes, we pick our battles.

3. I discipline differently than some other parents.

Early on, I learned the difference between a tantrum and a meltdown. A tantrum happens when a child decides to throw a fit to get his way. You can spot a tantrum because a child is watching for your reaction and is in control of the tantrum. The child can stop a tantrum at any time. A meltdown occurs when a child becomes overwhelmed by sensory input or emotionally dysregulated. A meltdown is much more emotionally intense than a tantrum, and once a child reaches a full-fledged meltdown, they’re no longer in control.

The meltdown is just as scary or more for the child than it is for those watching it happen. So, yes, my husband and I have rules and consequences for my son, and we try to be very clear about our expectations. Our son’s behavior is almost never a result of defiance but rather presents itself as an emotional outburst (often tears) as a result of frustration sensory overload or an unexpected change in routine. Therefore, while we give consequences, we are very gentle with him and try to give him tools to handle his big emotions. When his emotions ramp up, then I have to make myself very calm.  Which leads me to…

4. I spend most of my money on squishy balls and Play-Doh.

Many kids like these things too, but for my kid, they are a really big deal. One of the strategies we’ve taught Ben for dealing with his emotions is to squeeze a squishy ball. He has a huge collection of them for this very purpose, and heaven forbid one pops, rips or breaks. We have social stories ready for this very purpose (“Sometimes our toys break…”).

Play-Doh is another necessary tool. It builds his hand strength, which helps him with fine motor tasks like writing. One of his favorite things to do is open a brand new container of Play-Doh and inhale its unique smell. Recently we learned to make Play-Doh using Kool-Aid, and he’s been in heaven experimenting with different scent combinations.

5. My life feels like one big movie script.

Many children on the spectrum who are verbal like Ben engage in something called echoalia. This means that they parrot back phrases that they hear others say. Sometimes they may repeat a word or phrase right after the speaker says it, but in Ben’s case, it’s often stored away in his memory for later. Often called scripting, Ben can memorize lines from his favorite books and movies and uses them during conversations and playtime. I know his teachers think he has a vivid imagination (which he does), but they probably don’t realize just how often he’s channeling one of his scripts.

For example, when he says, “We regret to inform you that chapter three was a dream,” I know he’s quoting “Bad Kitty Gets a Bath,” or when he pretends to hack up a hairball in class (sorry Mrs. B), he’s acting out a scene from a chapter in “Bad Kitty School Days.” Often he will use lines from these scripts in conversations, which he did tonight when he called Daddy back upstairs after bedtime and asked, “What about goodnight kisses?” in a perfect Agnes voice from the movie “Despicable Me.”

6. We live our life by rituals and routines.

Every parent knows the importance of having consistency and routine in their child’s life, but for Ben, this predictability is his rock in what can be a chaotic and confusing world. I’m reminded of this any time I deviate even slightly from our rituals. Bedtime is a great example. I’ve never taught him to do this, but I swear my kid can tell time. If I try to start the routine a few minutes before the regular time, he’ll point to the clock and protest, “It’s too early!” After brushing his teeth, books and a story of what’s happening tomorrow (our social story that prepares him for the events of the next day) and prayers, I say the same phrase: “Mommy will be on Mommy’s bed.  Ben will be on Ben’s bed. Have a good night sleep and I’ll see you in the morning.” There’s almost something sacred about our ritual. He needs it to feel centered and secure.

7. I celebrate the little things and find joy in ordinary moments.

Most parents take for granted that their child will walk, talk, wave “bye bye,” say “I love you,” ride a bike… For some parents, each of these milestones is a long time coming, if ever. So I try to never, ever take for granted the progress Ben makes. Like the first time he had a real conversation with another person. Or the time he started a game of hide-and-seek with some kids at the playground. Or the moment when he snuggled up to me in the chair and leaned over to kiss me on the cheek. These moments take my breath away.

8. I let my kid have an iPad.

Yes, I said it. My kid has had an iPad since he could barely walk. I know some view this as indulgent, but I’ve seen Ben benefit from the programs it offers. We limit the amount of time he uses it, and lately he hasn’t even asked for it at home in the evenings because he’s busy with art projects or checking on his trains. However, I do rely on it when we have to wait for extended periods of time at the doctor’s office or if we take a long car ride to a therapy session. And, on the days when he has to stay a long time in the after-school program, it gives him something to share with the other kids.  The coolness factor certainly doesn’t hurt.

9. I honor my child’s requests whenever possible.

When Ben communicates to me that something is too much for him, I listen because I’ve seen what can happen when I fail to heed his warning. Like the time I kept him in a dark theater when he was petrified of the huge dragon puppet and then wouldn’t go into another dark place for months. So if Ben doesn’t want to go on a ride at Disney, I listen and honor that request. This doesn’t mean he always gets his way. If his safety is at risk or if there are existing plans that cannot be altered, he does have to learn to deal. But if I’m able to give him choices, I always do. And if his request is a reasonable one that I can honor, I always will because I want him to know he can always communicate his needs to me and they’ll be heard and respected.

10. I compare my kid to my kid.

Another thing I stopped doing very early is worrying about what my friend’s kid on Facebook is able to do that my kid can’t. I’ve learned it’s much more productive to measure Ben’s progress against himself. And while this doesn’t mean I don’t have goals and expectations for him, I’m not going to stress if he’s not making the most soccer goals or if he doesn’t make captain of the debate team. If he gets those things, it’s definitely a bonus, but I’m cheering for the progress he’s making because he always gets there in his own time.

young child on bicycle outdoors

A longer version of this post originally appeared on Changed For Good Autism.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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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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