My son, Isaac, lifted the items out of our cart one by one and placed them carefully on the conveyor belt: a bunch of bananas, two dozen eggs and an egg dyeing kit.

When the cashier announced the amount we owed, Isaac took the credit card from my hand, skillfully swiped it through the payment terminal and handed it to me without looking my way. His eyes were transfixed on the receipt that rose and curled from the register on aisle three.

“You have a nice day,” the cashier said, as I folded the receipt and tucked it into my wallet. Isaac didn’t move from the end of the aisle. He was happy watching customers come and go. I lifted our bag of groceries into the cart and touched his arm.

“Wait,” I said. “Wait. I need to go to customer service. You need to wait for me.”

Waiting is not easy for Isaac, and I always wonder what’s going to happen. He’s a wildcard. Will he sprint towards the automatic doors by the credit union, laughing when he sees people entering the store? Or will he stand nearby for a few short minutes and express his displeasure by screaming? Will he stare endlessly at people who are buying groceries? 

I hoped Isaac’s patience would be longer than the line.

As luck would have it, there were a gazillion people in line: a woman wanting to mail a package, a man with a mail order, a woman who needed to buy stamps…

Photo of Hy-Vee store
Every Tuesday I drive Isaac to our local Hy-Vee grocery store whether or not anything’s on my shopping list. He also goes with my husband, Chris, every Saturday for our weekly grocery haul – and he’s there any day in between when we need an item or two.

I’d guess Isaac visits the store five times a week – that’s a grand total of 260 visits for the year. I might be wrong. If so, I’m probably underestimating how often he’s there. If the grocery store were an airport, we’d be frequent flyers – the gold elite status members entitled to all the perks.

The employees at Hy-Vee are nice enough, although I don’t always think they live up to their slogan:  “A helpful smile in every aisle.” My 10-year-old son, Henry, joked the slogan should be changed to “A helpful smile in the bakery once in a while.” Nobody gives us the evil eye, and I’ve never heard a manager or an employee say anything rude, even years ago when Isaac spent considerable time playing with the automatic doors. We’ve always felt welcome in the store, which is one of the reasons we return so often. If Isaac could put a bed in aisle four and convince management to turn off most of the lights by 9:30 p.m., he’d likely move in.

Fortunately, Isaac was content to wait while I stood in line. He stayed about 15 yards from me, his eyes glued to the checkout lanes. I wondered how long he’d stay there without taking off and abandoning our cart. I figured if he ran off, I’d chased after him and we’d go home.

After a few minutes of waiting, an older man wearing a blue plaid shirt walked towards the front of the line. I wasn’t going to let him get in front of me, no matter what he needed. What if my son ran off before I was helped? Didn’t he know it was a gamble for me to be in line in the first place? Didn’t he know by looking at my gray hair and the bags under my eyes that my son has autism? 

Suddenly I found myself at the front of the line explaining what I needed to the woman behind the customer service counter.

“His mind is always thinking, isn’t it? It’s going a million miles an hour,” she said.

I looked at the older gentleman who’d been trying to cut in line. Was that an offhanded comment directed towards him? Was his mind going a million miles an hour, trying to find ways to cut in line? Had she seen him do this before?

Then it hit me. She was talking about Isaac. Of course she had seen us often in the store and knew we were together.

I nodded and pulled out a pile of receipts.

“We just love when he comes in here,” she said. Her words were genuine and so was her smile. 

I couldn’t believe it.

We just love when he comes in here. 

“That’s so nice of you to say,” I stammered, struck silent for a bit. “We’re here a lot. He loves coming in here.”

She nodded. “Is it the bright colors he likes?”

“Oh, it’s the whole experience – the people coming and going, the automatic doors, the loudspeaker, the conveyor belts, the elevator by the bathrooms, the sound when an item is scanned at the registers. It would be his dream to work here, I think,” I said.

She nodded and continued scanning my receipts.

“He has autism,” I added. His diagnosis is something I don’t disclose in public unless someone really needs to know. Because she was so friendly and interested, I wanted to tell her.

She didn’t say anything. She looked at me compassionately, as though she’d known her entire life that a little boy named Isaac had been diagnosed with autism 11 years earlier.

“He’s even looked me in the eye before,” she said proudly. Her statement made me wonder if she, too, knew and loved someone with autism.

She counted the money and placed it in my hand. As I opened my purse, she said, “Thank you. You two have a good day.”

Then she paused and really looked at me. She saw me. She saw Isaac. This is what I saw in her kind eyes and heard in the tone of her voice:

I’ve seen you in this store a million times.

I’ve seen your son walk with you, hand in hand.

I’ve seen him give you a kiss on your cheek. 

I bet you’re tired.

I bet you’re frustrated at times.

I bet some days you feel like the luckiest mama in the world.

I’ve seen your son’s love for the automatic doors. 

I’ve seen your son’s love for the elevator by the bathrooms.

I’ve seen the love you have for your son.

I’ve seen the love your son has for you.

Your son is incredible. 

We just love when he comes in here.

Isaac was still standing in the same location, gazing out into the sea of people and carts and conveyor belts.

“It’s time to go, Isaac,” I said. “Push the cart out.”

As usual, we exited through the wine and spirits department. Even though there’s a checkout there, we’ve never used it. It’s Isaac’s favorite store entrance, though, so we enter and exit there every time. I reminded Isaac to slow down as he put away the cart and bounded through the automatic doors.

The moment I stepped outside, my eyes filled with tears. It caught me off guard. Isaac had taken the van keys and was leading me towards our vehicle. He always remembers exactly where I parked the van. And as we were walking in the parking lot, I wiped away tears.

For a few minutes we sat in the van and listened to his favorite country music station, 98.5 FM. I replayed the scene over and over in my mind.

Isaac’s been to Hy-Vee a few thousand times in his short life. Although employees have been friendly enough, nobody had spoken up until today. We just love when he comes in here.

I heard:

You matter.

Your son matters.

We appreciate differences.

We just love when he comes in here. 

On the drive home I fought back tears, bit my lip and dabbed my eyes with a tissue. Like usual, I drove the long way home – past the library and coffee shop and McDonald’s and up the hill to the car wash  — because the routine makes Isaac happy.

I was happy, too, because a stranger — who didn’t have to say anything — was considerate enough to share her encouraging words with me.

It only took one kind heart and eight words.

We just love when he comes in here. 

This post originally appeared on Turn Up the V.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.


I love being a special needs mom.

I’ve always been seen as an outsider to society’s idea of “normal,” being a Gothic mom, so accepting and understand people who are different is always something I’ve done.

I was told by friends, preschool members and community members that my son, Michael, has “anxiety issues” and isn’t “fitting in” and “having a hard time.” At first, his father, Andrew, and I felt like we had failed Michael and our other beautiful little boy, Luke. But the next step was, how can we help him?

For a long time, it felt like everyone was talking super fast to us about all the benefits of autism and what help you can get from an autism diagnosis.

But you have to wait 12 months for to make an appointment to get one. Then you need to spend $400 to see a pediatrician to get reports to add to the diagnosis before you can get any help or funding for your son.

So it became the biggest and longest waiting game of my life. I started to feel like I had aged so fast. Waiting for help felt like a lifetime and it got to a point that I decided that I couldn’t wait for the help anymore. I need to help myself and make the change in my life on my own.

The first thing I did was accept that there was nothing wrong with Michael. Michael was not the issue; it was my friends and his preschool that questioned my parenting and made me feel like I was a bad mother. I’m not a bad mother. I know my son better then anyone in the whole world.

My love for him is still the same. It was not until people made me question myself as a mother that things became stressful.

Once I accepted that I am a great mother and Michael is perfect the way he is, I just needed support and understanding. The healing could begin and I didn’t feel like I had failed him anymore. I felt like I could do anything.

Because the one thing people often told me about autism and my son started with a lot of versions of “he can’t.”

“He can’t make friends.” “He doesn’t have social skills.” “He may never talk.”

So I started to learn and teach myself how to better understand autism and my son. I learned he speaks 1,000 words through body language. I learned everything he did was a sign of anxiety and issues he had.

Once I learned that it was really easy to help my son, I quickly learned he loves routine. So I made the house routine.

I learned that I talk too much and ask too many hard questions. So I started to cut down my words.

I learned that he has very big sensory needs and needs big movement like rocking, jumping and running to make him feel safe. And that giving Michael space is more important then anything else. When Michael needs alone time, I need to give it to him because everything in the day has just overwhelmed him.

One thing I love about Michael that I have learned is when he lines up his cars from one room to another. That’s his way of telling me I’m not aloud in his space, until he moves a car and lets me in.

Michael start talking in two months’ time, and he started making friends and playing with the other kids. He started to make eye contact when he wants to talk to you. He now says hello to new people and tells you when he need a sensory break: “Mom, I need to jump for 1 minute to make me feel better.”

My son and I have come a long way. Our relationship is stronger and very loving. Michael is now 5 years old and had his first birthday party with his friends. Over 15 kids came and there was no meltdown; Michael just had fun.

We are not 100 percent ready for primary school next, but we will take it one day at a time, and this year, we accept that Michael’s younger brother, Luke, has autism as well. His experiences with it are very different, so I plan to working toward building a strong, loving relationship with Luke the same way I did with Michael: with a lot of patience and loving support.

All the thing I was told my kids “can’t do,” I’m going to make sure they can do them and more. I not going to hold my kids back from doing anything in life.

I love Michael and Luke. They are both the most beautiful souls you will ever meet and I don’t care that they don’t fit into “normal” expectations like other kids.

I see my kids for who they are.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

Autism. In the days following my son Mike’s diagnosis, I remember a cashier innocently asking, “How are you?” as she pushed my groceries over the scanner. “How are you?” – the question felt like a knife. I just looked at her, pondering her words, pondering my emotions. It was too painful to provide her a canned response. Too painful to form a positive thought or consider ever having a positive emotion. “How am I?” – “How am I?” My son, my 23-month-old baby, my child has autism – how could I ever be simply fine?

Mike’s 2nd birthday party was scheduled to take place a couple of weeks after his diagnosis. I was paralyzed, simply going through the motions to meet my family’s basic needs. I belonged to my local Moms Club, and the other mothers came to my aid. They took over Mike’s party – hired the bounce house, cooked the food, helped with setup. I pulled it together enough to robotically attend, fighting back my tears and burying my emotions. To this day, I’m incapable of looking at the pictures from that party.

In the months following, I quickly formulated and implemented a plan. It was a recovery plan. I intended on pulling my son away from the diagnosis defining his life. I wouldn’t allow the dark thoughts to creep into my mind. I wouldn’t allow this diagnosis to define his future, not at 2 years old. I focused on the small progress he was making and threw myself into research. Autism became my life – therapy appointments, diets, vitamins, whatever was popular.

A year later, I found myself sitting and watching a movie that would change my life. No, it wasn’t the subject or message of the film that struck me – it was one line.

One simple question…

That question jolted my core and forced me to look at how I was living my life. I was living for the future – waiting for the therapy to work and my perfect child to arrive. I’d put everything on hold; I was going through the motions. I was wasting the childhood I did have with my children.

From that day forward, I’ve repeated that line countless times both in my head and to other autism parents. It’s given me the ability to shift my focus from what could be or could have been, to what is. It helped me decide what kind of life I wanted for myself and what kind of childhood I wanted for my children. It forced me to host great birthday parties and sometimes drag Mike into the world. I was able with modifications to fulfill the dreams I had for my kids before they were born. In essence, I chose to enjoy life. I chose to focus on each day without obsessing about an unknown future.

For, if this is truly as good as it gets, I choose to make the best out of what I have been given.

After all…

This post originally appeared on Autism Hippie.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. 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.

It’s never just a sandwich.

As an adult on the spectrum and a mother of children with autism, I am often asked about meltdowns and how they feel. I can tell you how it feels to have a meltdown from my perspective and how to help your child.

When you have a meltdown, it’s as if the world is ending. Everything is too much and you feel like an overwhelming darkness has engulfed your very being. Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.

When your child suddenly explodes because their sandwich has been cut at the wrong angle or another child has won a game, or even because they have been jostled in line, it’s the catalyst. It’s the last straw on the camel’s back. It’s not the sandwich, necessarily; it’s a build-up of things that may have happened during the day or even previous days. That sandwich was the last thing they could control and once that erred, their world crumpled. The last bit of control over their universe disappeared.

Smashing, ripping and throwing might be involved in an angry meltdown, as well as self-injurious behaviors to display outwardly the pain they’re experiencing internally.

How do I know this? Because it can take me missing throwing something into the bin or my PIN failing to go into my online banking properly and I will puddle, literally explode/implode and sob like my heart will break. It will be because of a build-up of things, and frustration will be the reason.

There’s also the depressive meltdown, the one that makes you feel like you’re nothing, worthless, and like the world would be a better place without you.

There’s no rationalizing with someone in either of these meltdowns. If you tell us it’s OK, it’s not. You are trivializing our distress and it will make us worse. “Stop” or “Get a grip” are also triggers, because we would if we could; no one wants to feel this way.

If your child is self-injuring, guide the hands down to a firm surface to hit.

If they are biting, grab a chewy or clean washcloth for them to fasten onto; they may need to feel the pressure of the bite to ground them, so wind a cloth around their hand so they can bite their hand without breaking the skin. If they head-butt, get crash mats and a safety helmet. A weighted blanket works well to help regulate, as does a weighted body warmer. Offer these if you see a meltdown is on its way.

Rumbling is a sure sign, or pacing up and down or verbalising aggressively , so redirect to a safe, quiet area, if possible.

If you are out and a meltdown occurs, the child may run. This is because we literally need to get away to somewhere quiet and sense of danger will fly out the window. If you need to restrain your child and get them somewhere safe ,do so. Print off a few cards detailing your relationship to your child and the fact they have autism and are having difficulties coping, as the sight of an adult carrying or holding down a screaming, struggling child can be mistaken as abduction.

If your child has violent reactions before school or after, it’s more likely anxiety and frustration at not being able to communicate what’s happening. Sensory overload is also a massive trigger. The school should be making accommodations for your child, like sensory breaks and allowing the use of ear defenders, tinted lenses and a chewy if needed. Check that your child is not being bullied, as they may not even realize that you don’t know that they are and may feel resentful toward you for taking them.

It’s never just a sandwich.

Lastly, only restrain your child if they are a danger to themselves or others, as a touch can feel like an electric shock and may cause them to strike out with a fight-or-flight mechanism.

Too often I see posts on Facebook and articles by parents moaning how terrible it is to cope with a meltdown and how hard it is for them; they have no idea how hard a meltdown is.

It’s about your child and how bad they are feeling. Please don’t punish or berate your child for how they have reacted, as its not willful or even conscious. Maybe they even blanked out completely, as in a full-blown meltdown. This can happen, too, leaving us bewildered at the devastation around us.

A cool drink and dark room, as well as clear, short sentences, will all help.

Remember, there’s more to it then a sandwich.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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.

Yesterday My Boy got a haircut. Haircuts are a thing. Many parents both on and off the spectrum struggle with them.

Our struggle isn’t just getting through; it’s the possible negative scenario if he can’t get through.

Out of fairness and kindness, I do my best to prepare anyone cutting his hair that, should things go wrong, there is no need to be afraid. I’m 2 inches from his shoulder. My hand is within touching range. I’m right here.

I’m here for him, but I’m also here for you. Because My Boy has needs that you, a stranger, will be unlikely to help with. That isn’t because you are ignorant or selfish or uneducated. It isn’t because you are cruel or judgmental or indifferent. It is because my child is not your child.

You do not know his favorite foods or his favorite colors or his warning signs or his hopes or his dreams or the Christmas list he is preparing to recite to the Easter Bunny or how, in our home, that all makes perfect sense.

So to expect you to understand his sensory needs or his meltdowns or the years of behavioral adjustments that I, as his mother, have had to study and learn and re-learn, doesn’t make sense to me. I don’t expect you to see him and respond to him as I do.

So I took him to you, a stranger, to cut his hair yesterday. I thought you were a charming, sweet young woman. A beautiful African-American with long, delicate fingers, you made every effort to calm my son and make him comfortable while you cut his hair.

You moved slowly and carefully around him, reassuring me that his jerky movements and tics were perfectly fine. You checked on him repeatedly. Made certain that hair didn’t get in his eyes. Arched your tiny arms over his head so that you wouldn’t interrupt his field of vision so that YouTube Kids on my phone could continue to keep him in the chair.

And you asked questions. Concerned, friendly, uncertain questions. Questions that I haven’t answered in a long time. Questions like “What’s a meltdown? I don’t know what that means.” You didn’t know.

And I had to look at you. A sweet woman, a mother and hairstylist who sees countless people coming and going in her day, and realize that I have become so enmeshed in autism that I had forgotten people still don’t know.

When I write or speak about autism, I do so from my own level of understanding. When I answer questions, I use terminology that is the autism equivalent to Christianese: words that only those in the ‘’circle’’ understand.

Words like meltdown and OT and PT and SLP and IEP and spectrum and severe and verbal and non-verbal and sensory processing.

And autism. Yes. “Autism.” Really.

To millions, ‘’autism’’ is a son or a daughter or a brother or sister or cousin or friend’s child. It is a documentary. It is a blue light bulb. Or a puzzle piece. Or a blog post.

But to millions and millions and millions more, it is an unknown. Maybe frightening. Maybe a curiosity. Maybe nothing but a word. And if I can remember this, if I can remember that if you don’t live autism or experience autism or work with autism or write about autism, then I will remember that you are the person I desperately need to reach during this time of awareness.

You are the person that I need to remember doesn’t daily (or hourly) differentiate between meltdowns and tantrums.

You are the person that I need to remember maybe can’t understand that our lives are different from yours in so many ways and yet so very, very similar because you simply have never had the opportunity to be made aware.

Most of my opportunities to meet someone like you will be in the aisle of Wal-Mart where my screaming child is flailing and I am asking you to stand back while doing my best to safeguard him while handing you an awareness card while sweating and hot-flashing and wishing I had made a shorter grocery list.

And maybe you will be receptive or maybe you will be confused. Maybe you will understand and maybe you won’t.

But sometimes I have opportunities like this: Beautiful, quiet moments with a beautiful, quiet soul. Where you can touch and see and listen to My Boy. Where you can ask and be answered. And feel safe to ask and be answered.

You see, I am aware of autism. 24 hours a day, 7 days a week, 52 weeks per year. I am always aware. Because my child has autism.

So spending that 15 minutes to help make you aware in a safe and kind manner will buzz through my memories off and on until they begin to dissolve and finally to fade into other moments of awareness. I know because I know there will be hundreds and hundreds more.

But that 15 minutes with us gave you an opportunity that, if I had been closed off to it, may have altered or ruined your understanding of autism forever. Or, worse yet, may have simply never happened at all.

Should advocacy for autism stretch beyond simple awareness? Of course. I absolutely believe so.

Should I understand that simple awareness is the first step and is still absolutely necessary? I absolutely believe so.

And that is why I am sharing here what I shared with you. So that more people like you will have a moment, however brief, to be made aware of something that is affecting 1 in 68 children. To be made aware of something that some consider a gift and some consider a curse, but that all affected consider a matter of importance.

Aware that 1 in 68 children means we should all be “aware.”

You don’t have to be aware at my level. It’s okay that you don’t know what OT/PT/SLP/IEP/504/SPD/OMG mean.

But if you can ask and see and know the basics, then you are aware. And I am grateful for that. Because our lives will be more beautiful and more comfortable because of it.

And maybe because of this 15 minutes one day, if you do see us at Wal-Mart, you won’t need the awareness card. Because you’ll already be aware.


A meltdown is similar to a tantrum, but at a much more intense level. You know how with a tantrum if you give in and give the child what they want they stop tantrum-ing? Because they were really throwing a fit for something they wanted? It was a manipulation?

When My Boy is having a meltdown, he can’t stop. You could give him what he wanted and he would be unable to calm himself.

He can hurt himself. He can hurt me. He can be completely unaware of anything around him.

It can be because he wanted something. That can trigger it. Or it can be triggered by a sound or a smell or a flashing light. Because sensory assaults can physically hurt him. Or it can be because he can’t communicate his needs.

He’s 5 and a half and he’s sitting here talking about Minecraft. But he could be thirsty and unable to process he is thirsty and begin screaming because his throat is parched and doesn’t know how to ask for a drink. And it hurts. And all he knows is that he has a need and I’m not meeting it. But he doesn’t know how to tell me he has a need. Because with autism, being able to speak doesn’t always mean being able to communicate. And not being able to communicate can really, really hurt a child.

And he could have a meltdown if I can’t anticipate his signals. If I am listening for words instead of looking for communication.

It’s confusing. There’s a lot to know. There’s a lot I don’t know. There’s a lot I am just now learning.

So it’s okay that you didn’t know. That you weren’t aware.”

This post originally appeared on “Letters From a Spectrum Mom.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

I saw the signs at 14 months old, and I tricked my brain into thinking “No, I’m being ridiculous, she’s my second child, of course she’s going to be different.”

I believed people when they told me that she would “catch up.”

I thought she liked playing alone and was just shy.

“No, she’s tired, and she’s just rocking herself to sleep, she’s fine.”

Denial. Denial. Denial.

Evaluations, testing and then diagnosis day.

Denial sucks because it hangs on tight and attaches itself to you even long after you think it has left.

Blame and grief come hand in hand, and they too rest somewhere inside you; they creep up on you when you least expect them.

Intensive in-home therapy started when she was 19 months old; the diagnosis was official when she was 21 months old. For 20 hours a week, my home is not my home — it’s a school for Zoey and me. I sit down on the floor to participate. I learn from her four specialists and therapists. They’re her teachers, and I, too, become her teacher, advocate and caretaker. I’m always her Mommy who loves her.

Now here it comes…


I treated her like a fragile piece of fine china, a porcelain doll I didn’t want to break. Oh, how I blamed myself! I let those emotions take over and I treated Zoey differently.

I babied her and let her get away with things I would never let my 4-year-old get away with…why, I don’t know.

When blame, grief and denial attach themselves to you, they can take over. At times, you hear yourself say “She doesn’t know any better… She can’t help but throw that cup across the room… She doesn’t understand the word ‘No!'”

Oh, but she does. She most definitely does.

Denial, blame and grief… you had me for a long time.

Zoey is just like my other child — she needs to hear the word “No,” and she needs to be told, “Get down” and “Not nice.” She needs discipline, and I wasn’t giving her that.

I treated her differently.

My daughter’s diagnosis has taught me that though she learns differently, she’s not different. She’s not a fragile porcelain doll that will break.

I noticed that when I said “No!” she looked at me and smiled, as if to say, “Yup, I’ve been testing you this whole time… I’m busted!” Now, I’m learning the difference between whether or not she’s testing me or she can’t help it. So I’m different now; I’m a changed mom. I see where I made mistakes, and I’m working hard on fixing them. It’s not easy, but it’s working.

So there’s my confession: I’m not perfect. I sure did learn more about autism from my child than I ever thought I would.

Follow this journey on Melissa’s Facebook page.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.