When I Questioned If I Did the Right Thing During My Son's Meltdown

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This was going to be one of those days, I could tell. Any little bump or graze would make him screech. If a toy wouldn’t stand, he’d yell. My son was on pins and needles. I thought an active day would fix things. We’ll go to the playground so he could climb and run it out. Since it was a hot day, he can enjoy the sprinklers too.

Getting him out of the house can be tough sometimes, but he went for it. Everything was going great; we came across a local festival. Lots of bouncy play areas and activities, another chance to expel all that energy. He waited patiently on each line for his turn at each activity. We made it to the playground, where he ran through the sprinklers and climbed and played to his heart’s content. I followed around, helping fill up his water gun, an excuse for me to dodge the heat and enjoy the sprinkler, too.

After that, we even went for frozen yogurt. With pop music pumping through the speakers, he couldn’t contain himself. He got up and began to boogie down, to the delight of the other customers and, I, knowing that I would’ve done the same thing if I wasn’t busy eating my fro yo, just sat and enjoyed seeing him so carefree after this morning’s edginess.

To cap things off, we needed to make a quick run to the drugstore. It would be a quick pass to get three essentials, and then we’d go home. It’s one of his favorite hangouts, so he was game. As promised, we got the items quickly and got in line to pay. Then he spotted a stuffed animal toy, this one larger than the one he already had at home.

After saying no to half a dozen other plush toys at a local toy shop on the way to the playground, he heard no one too many times. He started crying. Just as we were next on the cashier’s line, he stomped away, yelling all along the way to the back of the store. I waited for a minute, but it was clear he wasn’t coming back. I got out of the line to find him. I called him, but no answer. I found him sitting with his arm in the health station cuff, trying to check his blood pressure and giving me the side eye. It was comic genius, but after a long day of running after him in the hot sun, I could feel my own pressure rising.

I told him if he wanted to get home quickly, he needed to calm down. He protested and got loud again. I told him I had to get back on the line, but he said he needed to sit. I asked him to sit on a beach chair nearby until he calmed down. Thankfully the line was short and I was up next. But his shrieks were so shrill, everyone stopped on their tracks. I ran to him. I hadn’t ever seen him have a meltdown like this. My skull was rattling. I told him we needed to leave right then, but he shrieked even louder because he didn’t want to leave.

At that moment my mind raced, trying to find a way through the noise and chaos. The people gawking, my son unable to stop the ear-piercing shrieks, and I couldn’t get him to leave or to calm down. OK, what now?

I wanted so much to calm him down and not cause any more disruption. But all I got out of him was his confusion: He was angry, but he wanted us to pay for the items and get them home. But he was angry and couldn’t stop yelling. But he didn’t want to go home.

Even though it was a neurotypical reaction to not getting a toy that started this, it was that edginess he woke up with that was there now. It wasn’t about the toy anymore. Neither of us knew what it was about anymore. But I had to get us out of there.

I tugged at him to come and he continued melting down. I ran as quickly as I could, parked the basket under the register and apologized. I explained he was having a meltdown and had to get him out.

I ran out with him, still screeching, out to the street. The whole way over, he stomped and yelled, begging me to get the basket and pay for the items. I could feel the huge knot in my chest rising into my throat. I couldn’t. Now we had new gawkers outside and they only had half a story. I held both his wrists and swallowed hard. I looked into his eyes and told him my own fear. “If these people think you’re being hurt, they may call the police.”

His eyes widened. “Am I going to jail?”

“No, Baby,” I said. “But they’re going to ask lots of questions about me hurting you.”

He started yelling. “No! I love you!”

I hugged him hard and this time, spoke even calmer. “I’m not trying to scare you. We’re going to be OK. But not everyone knows what to do when they see someone screaming like you are. Not even me.”

He looked at me, calmer but still frowning. “But I’m so mad!” He started stomping and looking to see how I’d react. My mind fumbled for the proper response.

So I frowned back. “You’re doing it wrong. Stomp again. Harder!”

He looked at me, perplexed. He did a half-stomp.

“No!” I grabbed his hands. “Go ahead. Stomp! Stomp harder!”

I started stomping with him and he followed suit, stomping up and down like we were on a trampoline. His frown began shaking out and a giggle erupted.

“Can we sit on the ledge? I’m tired.”

With that knot in my chest still doing a number on me, it was me who was torn. I wanted to get home already, but I was wiped out, too.

“OK.”

We made our way up the hill to the garden ledge of a senior home and I held him while we rested.

There I tried to get my bearings. I hoped he understood that telling him my fear wasn’t a guilt trip, but my trust that he was old enough to become aware of the way others could interpret things. That I’m as lost and scared as he is, but if we work together, we could work things out. And I wondered if I did the right thing.

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You Are Your Child’s Greatest Advocate: A Poem

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You are your child’s greatest advocate when they need a diagnosis.

You are your child’s greatest advocate the day they are diagnosed with autism.

You are your child’s greatest advocate the day they begin receiving supports.

You are your child’s greatest advocate to be there the days they go through challenges.

You are your child’s greatest advocate when they need understanding.

You are your child’s greatest advocate when they go to school for the first time.

You are your child’s greatest advocate if your child is ever bullied.

You are your child’s greatest advocate when anyone doesn’t understand that you have to educate others about the way your child learns.

You are your child’s greatest advocate if they ever fall on a wait-list for supports.

You are your child’s greatest advocate when people don’t understand that you have to meet your child he or she is.

You are your child’s greatest advocate when you enter IEP meetings.

You are your child’s greatest advocate when they may need accommodations outside of the school.

You are your child’s greatest advocate to help them transition to adulthood.

You are your child’s greatest advocate when the school bus stops coming after the age of 21.

You are your child’s greatest advocate to make sure they have a village that surrounds them for their entire life.

You are your child’s greatest advocate for 500 other some-odd reasons that aren’t listed here. If you’ve met one person with autism you’ve met one person with autism, and each of our stories is different. It is a spectrum.

You are your child’s greatest advocate to make sure they never feel alone

For those reading this, take this poem and share it with your local communities to make sure each parent and guardian who raises a child with autism knows about their impact. I was diagnosed with autism at 4. My parents became my greatest advocates, and through years of occupational, physical, music, speech and theater therapy I’ve been able to live many of my dreams today as an adult on the spectrum who is a national speaker and author. I now have become an advocate in the hopes of helping people on the spectrum and their families.

Never forget the impact you have because even if you don’t realize it at times…

You are your child’s greatest advocate.

A version of this post originally appeared on KerryMagro.com.

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A Letter to the Welsh Assembly About the Autism Act That Didn't Pass

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Over here in my corner of the U.K., it’s been a big week for autism rights. The Welsh Assembly, or Senedd, has been voting on whether or not Wales needs a specific “Autism Act” that would protect autistic people’s rights in law.

Sadly the motion didn’t pass, despite every party pledging their support to autism rights. So where does that leave people like me? People living here now, with no support?

I was inspired to write a letter.

Dear Senedd,

I don’t have a loud-hailer or a soapbox. I don’t have the ability to build a public, social platform. I don’t have the structure to make you listen.

But I do have a voice. 

I started off meek and mild and questing, the more I learned the more frustrated I got, but I still wake full of hope. I still believe. I still know things can be better.

This week the Welsh Assembly, a beautiful, swoopy glass building, voted against an Autism Act for Wales — 24 to 27. So close. So few minds to change to change my world, but change they did not.

Why oh why would we need such a thing? An act just for autism? An act of autism? An enactment of autisming?

Because of me.

Because of people like me. Because of my autistic community, my people and their families and carers. Because it matters.

Do you know how much support is available to me in mid-Wales? Right here and now, today, as an adult with autism?

There is nothing. Not one thing. No occupational health services for autistic people (no specialists), no counseling services for autistic people (no training in relevant adjustments), no support groups (“too functional”), no support in work (“not functional enough”).

Why do we need an Autism Act? Why do we need any legislation that offers support and constructive solutions? Because it changes people’s lives for the better. Because it helps. Because suicide rates in “high-functioning” (I hate that term) autistics is nine times that of the general population, but there’s less support available than for neurotypicals.

Whatever we have now has resulted in nothing. No safety net.

I am the eternal optimist. I will keep hoping. I will keep using my muffled voice, because there are those among us who need me to speak.

Wales, I love you. I adore you. Your people, your greenness, your mountains, your valleys. Only you know my hiraeth when I’m not here. Nowhere undulates like you. Nowhere is warmer and kinder. But you’ve let me down. You’re letting me down every day. 

And we need you. 

Cariad

Rhi

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

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What It Means to Be a Ghostbuster When You're Parenting a Child on the Spectrum

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My boys’ obsession with “Ghostbusters” began one afternoon when I was trying to do yoga alone in my bedroom. The movie’s theme song came on, having somehow made its way onto my “Soothing Instrumentals” playlist. The boys stormed in. Soon the three of us were flying around with towels and blankets thrown over our heads, spooking one another and shouting out, “Who ya gonna call?”

Since then we’ve listened to the song countless times, purchased Ghostbuster action figures and even built a model of the Ecto I. Perhaps against my better judgment, I let the boys watch a snippet from the original movie: the scene when Slimer – the putrid green ghost with an obscene pink tongue – first makes its appearance. At the instant Slimer charges Dr. Venkman, ensnaring him in green goo, my older son, who’s on the autism spectrum, ran out of the room.

Although he hasn’t asked to see the movie again, my firstborn’s preoccupation with the paranormal continues. He has endless questions: What are ghosts made of? Where do they live? Are they real? He is both intrigued and unnerved by these invisible beings floating through space, haunting us and wreaking havoc on the material world, somewhat similar to the anxieties he must face every day.  

I didn’t know until recently the extent that autism and anxiety can overlap. Many of behaviors exhibited by kids on the spectrum are actually rooted in anxiety. The list of my son’s anxieties is ever-expanding: the dark, crowds, unexpected noises, changes in routine, odd foods, and now, thanks to his mother, green ghosts that slime people.

Anxiety is also a big part of raising a child with a disability. My own fears often well up at night, like the ginormous Stay Puft marshmallow ghost. I am visited by apparitions from the future: my son, five years from now, trying to correctly identify the letters of the alphabet, in a self-contained classroom or kicked out of school altogether because he’s “too difficult” to manage. My son, age 20, struggling to complete high school or find a job, and unable to live independently. Then I move onto my toddler, who’s showing some signs of autism: meltdowns, food and auditory sensitivities.

I wake up from these restless nights as if I’ve been slimed. I’m liable to transfer this anxiety onto my children. There are times when I push them to perform to alleviate my anxiety, forcing my older son into more handwriting practice or insisting my younger son eat everything on his plate just to prove to me he’s not a “picky eater.” In my desperation to be reassured that they will be OK, I end up communicating to them that they are somehow not OK. 

These moments call for some serious ghostbusting. For me, that means refocusing on what’s real. What’s real is my older son’s smile, his laughter, his sly sense of humor and his wicked morning breath. What’s real is that, yes, he has some significant challenges, but we’re working on them and he’s showing progress. What’s real is my younger son is a stubborn 3-year-old who throws fits and sometimes refuses to eat.  He’s also sociable, confident and positively gleeful. When I get the slime out of my eyes and focus on the real flesh-and-blood children before me I see, in actuality, they’re doing just fine.

Yesterday, the kid’s “Deluxe Ghostbuster Costumes” arrived via Amazon. These full-body jump suits, complete with the Ghostbuster emblem and inflatable proton pack, promise to take their ghostbusting to a whole new level. Now the boys can suit up, turn on the theme song and zap away all those pesky ghosts that keep us up at night – while I try to do yoga.  

Follow this journey on Somewhere Over the Spectrum.

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When a Parent Gets Criticized If Their Child With Autism Wanders Away

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Every year I feel like I hear more stories of children with autism who have wandered away from their families. It’s often one of the scariest feelings in the world when that situation occurs. Instantly the trigger kicks in, and it becomes a time when families start alerting law agencies, neighborhood watches and their friends and family members to help in the search for their child.

The issue I constantly see is when a parent receives criticism for not doing a better job of protecting and watching their children. Often times, the interrogation begins and these parents are asked why they didn’t do this and why they didn’t do that, while others say they would never let their child get into that situation to begin with.

Whenever I hear someone make a comment like that, my bottom line is simple: Never criticize anyone until you know all the facts.

Being a parent to a child with autism can often be a 24/7 job. You support them and you become their champion for supports. Until you’ve walked in their shoes and understand that child as well as that parent does, you don’t do anything by criticizing them during a time like this. The important thing to do is find the child.

When children go missing, it becomes imperative to find them as soon as possible. The National Center for Missing & Exploited Children is the nation’s clearinghouse on issues related to missing and sexually exploited children, and they do their best to assist families and law enforcement agencies to help find missing children. New technologies are also being developed that focus on safety for families, from smart homes to wearable tracking devices, so you know where your child is at all times.

While I never went missing in my life, I was prone to bolting during my first few years of adolescence growing up on the spectrum. Each individual is different, but today this cause is near and dear to my heart. Every life is precious. And according to a study published in the journal Pediatrics, 49 percent of “survey respondents reported their child with an ASD had attempted to elope at least once after age 4 years.” 

There is still so much more we can learn out there about how to protect our loved ones. When the time comes, though, please don’t criticize. Instead, help explore ways with them of getting things back on track.

Be safe and show love during both the good and bad times we all have. I pray for the safety for our families often and always.

If you are looking to learn more about this subject you can find free resources at The National Center for Missing & Exploited Children’s website here.

This post first appeared on KerryMagro.com.

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I Want to See More Autism Awareness in Schools to Help Put an End to Bullying

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One of the quotes I often see out there in the autism community is:

“I don’t think the worst thing that could happen to me is raising a child with autism. I think the worst thing is to raise a child who is cruel to those with autism.”

One of my earliest memories of cruelty to another child was by a bully. My peer had a last name that sounded similar to an insect, and one day a bully who saw a bug on the ground at school stepped on it and told my peer, “Looks like I just stepped on your cousin.” 

Words aren’t harmless. They can hurt our loved ones. It made me sick to see something like that. While my peer, distraught and close to tears, tried to compose himself, I wanted to say something to the bully but just didn’t know how. All I could think about was the ignorance I saw.

When I think of the quote above, I often think about the ignorance that is still out there today. When I speak in schools about bullying prevention and autism awareness, so many children still don’t know what autism is, let alone that Autism Awareness Month is in April and World Autism Awareness Day takes place on April 2.

Other times, I asked them what attention deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), dyslexiacerebral palsy or Down syndrome is, and they didn’t have a clue about those either.

It makes me often think about the future for our community. One of the biggest changes I observed when I moved from public school to a private school for students with disabilities in fifth grade was a significant increase in disability awareness. Not only would the school share facts about most disabilities, they would also share stories about inspiring celebrities who have disabilities to try and inspire us.

That type of awareness is something I wish more people would advocate for. It’s been shown that if you educate a child early on, much like giving a child with autism early intervention, you can give them a great opportunity to progress as they get older.

We need to teach our kids that autism is not a tragedy. Ignorance is the tragedy. Then hopefully these kids can focus more on making friends, getting the supports they need and living a life where cruelty among bullies is a thing of the past.

This post first appeared on KerryMagro.com.

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