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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Image via Thinkstock.

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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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When a Lady at the Grocery Store Gave Us Just What We Needed During My Son's Meltdown

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I believe when God created this world, he sent in a few angels who would touch people’s lives with their kindness. They would come into our lives and restore our lost faith, our strength, our hope, and our happiness. When others stare or ignore, these angels would reach out and hold our hand; when others stand and judge, they gently whisper, “I understand.” I am lucky to have met one of those kind souls.

Those with a child on the autism spectrum know how quickly a seemingly innocuous event — a walk in the park, a trip to the store, a day at a fair, a birthday party – can escalate into an incident. What we call meltdowns are just an external manifestation of a person’s inability to communicate, the sensory overload playing havoc on his or her mind, and tons of other factors we might not even know.

It was one of those days for my son and one of those days for me when you just feel so defeated you don’t even want to try. We had moved to a new neighborhood and after a lot of searching found a speech therapist. On the first visit, she politely asked us to find another therapist because Vedant was “a handful” for her. His special needs school he was attending had been asking me to find him a new school because he was “too low-functioning” for them. Vedant was having a rough phase. I knew something was bothering him, but I was unable to do anything except watch helplessly. His distress often ended up in him, out of all the pent up frustration, grabbing my hair.

It was one of those difficult times when nothing seemed to go right. However, I had a household to run and so had to go grocery shopping. While I was waiting for my turn at the register, Vedant suddenly started crying and grabbed my hair. He has a death grip when he wants (I must be feeding him something right!), and as he pulled in all directions, I withered in pain, unable to peel his hands off me.

I could feel all eyes on us, except one — the lady in front of me at the register.

She turned around, looked at me with the gentlest of eyes and asked if I wanted her to help me get stuff off my cart for checkout. I nodded my head, still trying to calm him. When Vedant felt better and freed me of his grip, I went ahead to pay, but the cashier said the lady who had emptied my cart had already paid for me. It was then I noticed that she was waiting for me with my cart while she had another store associate push her own. I went to thank her and pay her back, but she adamantly refused. By now, Vedant had settled down too, and my head with a disheveled mop of hair could think straight again. She asked if she could walk with me to my car. I gladly agreed. She said, “My son is on the autism spectrum too. I understand.” I forced a smile of acknowledgment and walked along.

We walked to my car in silence. She said nothing, but I could feel the warmth that radiated from her. It touched my heart. She did not try to do anything over-the-top to make me feel obligated — talk too much, sympathize too much, preach or try to be condescending about the whole situation. She was there by my side, like a strong support. I couldn’t have asked for anything more at that moment. I just wanted someone to shield me from everyone else, and she appeared.

There was healing in that silence. We reached my car, and she nicely stacked everything in my trunk while I buckled up my son in his seat. I went back again to thank her. She gave me a hug — the warmest and the most honest hug I have ever had — and said, “God loves you.” Then she quietly walked away.

I did not ask for her name or her number or notice where her car was parked. I was too overwhelmed. I watched her walk off, and then I went into my car and cried. I have no idea what those tears were for. Were they tears of exhaustion, of defeat, of fear of failure, of embarrassment, or were they tears of joy, of gratitude and of thankfulness? I’m not sure. All I know was that crying felt good.

Since that day there have been several occasions that Vedant has had a rough moment in a mall or a park or another grocery store. But I no longer feel as overwhelmed as I did that day. Not embarrassed either. I don’t know how that incident affected me, but it changed me to believe I have a kind soul watching over us, and it will come to our rescue when I really need it.

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