5 Things About Autism I Wish Someone Had Told Me

Most of my grown up life already didn’t look anything like I expected it to. And then along came autism and our world really flipped upside down.

I’d heard so many different perspectives on autism from professionals and parents:

This is going to be so hard on your marriage.

You are the only person who will advocate for your child.

The world is full of judgment. People stare and comment on your parenting skills.

Over and over I heard these exact same statements, so I accepted them as truth. I was scared and depressed about how bleak the rest of our life clearly was going to be. I was frightened my sons would never know happiness. Scared my marriage would crumble from the stress. Scared of everything really.

But now that our own life has unfolded, I realize many of these truths do not have to apply to us. And the ones that do? It’s not where we put our focus. Life is hard, yes, but it is also too good and too short to miss out on all the blessings it holds.

Here are five good things people don’t tell you about raising a child with autism.

1. You will realize just how good people can be. Our life is a journey, and we have met so many wonderful people along the way. Caring, kind, patient people with extra love to give. Those who have been affected by autism and those who haven’t but are willing to learn more. I’ve met so many teachers with so much passion they inspire me to want to change the world. Behavior therapists who have been hit and kicked and screamed at again and again, and yet they still show up for work the next day with a smile on their face. They’ve taught us skills we carry out at home that in turn have made my sons’ lives so much easier and happier. They rejoice over milestones and advocate for services right along side us.

We’ve met so many kind people who want to help.

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Greyson, Parker and Frank

Even our garbage man is now a personal friend — he texts me before he gets to our street because he knows how much my boys love the trash truck. People are good.

If people do stare when my son is having a meltdown, I don’t pay any attention. I am more concerned with helping my son in those moments. I don’t focus on the people who just don’t get it. They are not worth any sacrifice of our precious happiness.

2. Failure doesn’t mean not doing it right– it means not even trying. I can’t tell you how many times I’ve sacrificed awesome in the quest for perfect. And then feeling like I failed because something didn’t go exactly as planned. I berate myself for the tiniest mistakes and the smallest flaws. Why did you say that? Why didn’t you do that? One day it hit me — what kind of message is this sending my sons? They are not perfect, yet I love them exactly for who they are. I love them even more for their human-ness. They get up every day and do so much out of their comfort zone. They try and try and keep trying, even when they aren’t able to get it right. That isn’t failure. That is inspiring and amazing and incredible. They have taught me perfection is overrated, and failure isn’t a lack of perfection — it’s a lack of trying. I now try to offer myself the same grace that I extend to my boys. I want the world to love and accept my sons, and to do that, I must practice by loving and accepting myself, exactly the way I am. Now, whenever I’m in unfamiliar territory and I don’t want to do something I think, “You can do this. If Greyson and Parker can move through this uncomfortable feeling, than so can you.”

3. Everyone is going through something. I try my hardest not to compare the “somethings,” because it’s a terrible waste of energy with no good outcome. What’s that? Oh, my life is harder? OK, I win  or uh, lose then actually.

Comparison is a game with no winner.

Here’s the deal: life isn’t balanced or fair, and the sooner you accept that, the sooner you can move forward and seek happiness. Hard circumstance in life can open you up and make you softer to the world and to people suffering. Autism has grown my heart ten million times bigger. Now, when someone else is going through something hard in life, I try to reach out to him or her. I try not to be afraid to mention the word, whether it’s death or cancer, divorce or autism. I’ve found an empathy for mankind that never before existed to this degree. We are all in this human thing together. There are so many ways we can inspire, share and connect, regardless of circumstances. We must pave the paths for those who walk with us and after us. If you focus too much on what isn’t, you miss all the what is — and oftentimes, what is… is amazing.

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4. Milestones feel like your own personal holiday. Like fireworks and Christmas and York Peppermint Patties and Disney Land and puppies and a million other good things rolled into one.

They have the ability to make your whole day, week, month and sometimes year. I still smile when I think of the first time my son Greyson pooped on the potty or was first able to make a “C” sound and say “car.” I realized early on our family’s milestones don’t look like others, but that doesn’t mean they aren’t amazing.

Sometimes I want to call them “ten-milestones” because they arrive so infrequently. But because of that, every inch forward is celebrated in this house. I might go so far as to say milestones are more amazing because they had to be fought for, earned and may have even taken forever.

5. Life doesn’t have to be perfect to be amazing. This unexpected life also holds so much beauty. There is no parallel universe where everything is good and perfect and easy. When you visit that land of fiction in your imagination, it blocks you from being able to live and accept today.

This is how your story goes: you have two choices, fight it or embrace it. I’ve done both, and fighting it takes too much energy. I’m going to screw up, I’m going to try things that don’t work. I’m going to do 99 things to find the one thing that just might possibly be the home run. That’s the path with autism, winding and weaving exactly how it is meant to be. My sons teach me to slow down. They help me notice so much beauty in the world.

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They teach me the importance of hard work, taking breaks and never, ever giving up. They make me believe life can be amazing. Sometimes I still can’t believe God really gave them to me. I am so lucky.

When I meet new parents just starting out on their journey with autism, I tell them the good stuff. Because it exists. And I’m sure everyone else has already repeatedly told them the downsides, heartaches and difficulties. I just want to remind you your life can still be amazing too. In life, happiness isn’t a guarantee—but each one of us deserves to find it.

This post originally appeared on Life With Greyson and Parker.


Here’s to Celebrating the Successes, No Matter How Small

Today was a day of successes. Little ones, but big to us.

First thing this morning, when I’d just gotten home from dropping my son, TJ, off at school, the phone rang.

“Mom,” TJ said, “Dad gave me the wrong snack!”

This has resulted in meltdowns and ruined days before, so I braced myself.

“Oh no, buddy! Can you eat it anyway?”

“No way. It’s Cheez-its.”

His normal snack is cheddar Goldfish. Totally different shape.

“Ok T, I’ll grab some Goldfish and be right there. I’ll come to the office, OK?”

“OK. Bye, Mom.”

When I got to the office with Goldfish in hand, I waited a few minutes. When TJ came in, he was fully dressed in his gym clothes.

He has the knobbiest knees ever, by the way. Like baby horse legs. But the best part about it? He was all smiles.


He said, “Thanks, Mom!” as he grabbed his snack bag. Then he smiled again, turned and left.

It took me a minute to realize that was it. No tears. No harsh words. No signs of stress.

No meltdowns.

I was so happy I almost skipped back to the car. Not really — because I’m 45, and that would have looked stupid. Plus, I most likely would have found a way to completely wipe out on the ice.

Anyway, it was a success.

We would have two more successes later in the day, too. TJ cooked his own dinner while I was at Zumba. Then we had a verbal exchange that sounded downright typical of any 14-year-old and his mom.

It was a good day. A very good day.

Hooray for the good days!

This post originally appeared on I Don’t Have a Job.

Why My Son Is Not the Face of Autism

“He doesn’t look like he has autism.” 

“But he seems so normal.” 

“Oh my kid does that, too.” 

Trying to advocate for my son while also attempting to raise autism awareness can be a tricky business because my personal experience with autism is limited to one person: Mareto. Yes, I know other children with autism (which wasn’t the case a few years ago), but I don’t know them or have experience with them like I do with my son. So, when I share about autism and parenting a child with autism, it’s from the perspective of Mareto’s mommy. And sharing can be frustrating because often I get responses like the comments above.

What do you say to someone who doesn’t think your child looks autistic? Does autism have a look? Yes, I suppose it does. It looks like beautiful brown eyes that sparkle in the light. It looks like a wide smile and a face that lights up with joy over the sight of a train. It also can look frightened and confused and bothered by loud noises. Autism can look like blue eyes or green eyes, blond hair or black hair or brown hair or red hair. Autism can look like eyes that never quite meet your gaze or eyes that have learned to make contact except when overwhelmed or frightened. Autism can look like diapers at 5 or potty trained by 3. Autism can look like flapping and spinning or sitting quietly with an iPad. Have you caught on yet? There is no one look to autism.

Did my son seem “normal” to you in the ten minutes you spent with him? Well, that’s nice because he is normal. He’s a sweet, normal, beautiful boy with autism. If you’re trying to tell me that you didn’t notice any signs of autism in your limited experience with him, that’s OK, too. But please keep in mind that Mareto has good days and bad days, and sometimes he has good hours and bad hours. But if what you’re really trying to tell me is that you don’t think he has autism, then please consider how hurtful that might be to us, his parents. Please consider how that might invalidate all our efforts, all our battles and all our triumphs. What you’re really implying is that we’ve wasted all our time for the last two and a half years because he’s just “normal.”

Or what about the little girl down the street? The one who doesn’t look or act like my Mareto. Her parents are concerned and have been referred to a specialist to evaluate her for autism. But she couldn’t have autism because she’s so different from my son. She doesn’t share the same struggles or act the same way. She eats just fine, and maybe she’s even potty trained. But she has her own list of quirks, and maybe it is something… but surely not autism. In comparing her to Mareto we make a common mistake. We forget that autism is a spectrum — a wide spectrum of incredible people with varying gifts, interests, looks and struggles.

There’s no one look to autism, and there’s no one face of autism. My friend’s son loves fruit, but my son is repelled by it. They both have autism. Her son is a blue-eyed, blond-haired little boy and mine is a brown-eyed, brown-skinned little boy. They both have autism. Sometimes my son makes eye contact, and other days he struggles to meet my gaze. He still has autism in each moment. Sometimes my son will play enthusiastically with other children, and other days he hides in the pantry to escape all the noise and interaction. In each scenario, he still has autism.

My son is not the face of autism.

But he is one of the many beautiful faces of autism.

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This post originally appeared on LaurenCasper.com.

27 Thoughts Everyone Has While on the Phone With the Insurance Company

Dealing with insurance companies is the worst. Getting on the phone to discuss your coverage can be like embarking on an epic saga filled with disappointment, confusion, stress and maybe a threat (or two).

Here are 27 thoughts everyone has while on the phone with the insurance company:

“OK, I can do this. How bad can it be?”


“Annnnnd, I’m on hold.”


“All right, it’s taking a while, but I’m sure I’m next…”


“This is officially taking FOREVER.”


“Is there even a person on the other end?!”


“How has this phone call not even started?”


“I wonder if I could just doze off a little while I wait…”


“Oh yeah? My call is important to you, is it?!”


“Somebody… help… me…”


“Oh, oh, oh! A human voice!”


“Nope. Just the voice recording again.”


“This crappy elevator music is rotting my brain!”


“Yessssss, a human voice. For real this time!”


“Now, let the battle begin.”


“I’ll ask you questions all day long if I have to. Consider this a warning.”


“Please, please, please say we’re covered.”


“Oh, I’ll show YOU what ‘medical necessity’ looks like…  “


“I wonder if I can bribe this person… ?”


“I’ve spoken to five different people and received five different answers!”


“You will NOT put me back on hold.”


“Wait, who is this? Do you even work at this insurance company?”


“OK, I can do this. Hang in there.”


“Coverage denied?!”


“Do not start crying. DO NOT start crying.”


“Maybe we don’t need insurance. I could just sell a kidney…”


“I’ve wasted so many hours of my life on this phone call… “


“Guess I’ll just try again tomorrow.”

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The Person Who Taught Me That Even If You Can’t Speak, You Can Still Have Something to Say

Even though I was in a multi-handicapped classroom growing up, most of my classmates had ADD, ADHD, dyslexia, etc., but few had an autism diagnosis. I didn’t a peer with autism until I was a young adult. Because of that, I grew up not really grasping how wide the spectrum of autism really is.

Then I learned about Carly Fleischmann, a 20-year-old nonverbal adult from Toronto, who’s one of the leading voices we have in the autism community today. Diagnosed with autism at the age of 2 , Carly has lived with an oral motor condition that’s prevented her from speaking. While going through therapies, like many of us do on the autism spectrum, Carly found her voice through the help of a laptop. Today she has conversations and shares her thoughts via her computer and iPad. 

The first time I heard about this profound individual was when her book “Carly’s Voice: Breaking Through Autism” came out in the fall of 2012. Until then, I mistakenly considered individuals with autism who were nonverbal as people on the low-functioning end of the autism spectrum. Carly helped changed the conversation for me. I was unaware, and Carly helped opened my eyes to the abilities and brilliance of not only those who are nonverbal but those on all ends of the spectrum.

Later I would become even more aware of some of the challenges those with autism go through when Carly came out with a website called Carly’s Caféwhich shows what an individual with autism can go through when experiencing sensory overload. Much like in her book, it opened up another lens to the already wide spectrum I’d been learning about.

That’s the message I hope to leave with you today. I hope you understand that even if someone is unable to speak, it doesn’t mean they can’t communicate. Currently, it’s projected that one third of children and adults with autism are nonverbal in our community, but today some of the most brilliant individuals I know are on that end of the spectrum.

It just goes to show you, “If you’ve met one person with autism, you’ve met one person with autism.” And if you’re nonverbal, it doesn’t mean you don’t have a voice and something to say.

This blog originally appeared on Kerrymagro.com.

When You’ve Given Up Hope That Things Can Get Better, Please Read This Letter

To the One That Gave Up Hope,

I remember our conversation like it was yesterday. I asked you a question that I don’t think you were ready to answer. Maybe it was too soon to ask. Maybe you needed more time to come to the conclusion by yourself. It was a question I asked countless others in different situations, but your response was the one that had me thinking the most. 

I asked, “Can you tell me about the positives?”

You wrote back, “What would that do? Instill a sense of hope that things will get better?”

It took me a while to respond to you after that. It made me think a lot about the struggle we all have to believe in one another; to believe that hope can exist in this world.

Everyone’s circumstances are different, but in a society where hope can seem unattainable, it can be easy to come to the conclusion that things can’t get better. 

For me, though, hope is something I think we should all aspire to.

It was my family’s hope for me, their determination to fight for me, that led to my progress. Accomplishments that may seem small to some — like getting a job, finding a girlfriend, graduating from school — were things I could have never imagined achieving while I was growing up. 

I was put through the ringer as a kid, but hope gave me motivation — the same motivation I have today. I hope to show others, through my story, that great things are possible not only for those with disabilities but for everyone.

If you ever come across this letter, I hope you reach out to me again and let me show you the reason why things will and are getting better. I want to show you, just like my family showed me, that hope is possible and that there is someone willing to fight for you. Some days will obviously be better than others, but if you take anything from this letter I wish it’s this… 

Never close the door on hope. 

Hope helps us push through some of the toughest times in our lives and gives us the strength to get to that finish line when we don’t think anything else will. We’re all human beings who make mistakes and have to live our journeys the way they were meant to happen. 

I wish I could give you that hope now. I have enough hope for both of us, and there’s someone out there in this world who wants to be with you every day. There’s someone out there who would go to lengths unimaginable to make you see hope.

So, please, the next time you give up hope and believe things can’t get better, remember this letter. Give hope a chance now, and I promise you, if I can be there to guide you, it I will. I hope you know that now.

“We must accept finite disappointment, but never lose infinite hope.” — Martin Luther King Jr.

This post originally appeared on KerryMagro.com.

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