How I Learned to Accept My Son’s Quirky Obsession

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Right now, somewhere out there a mom or dad is desperately trying to redirect their autism spectrum disorder child from a burdensome fixation or obsession. They may be at their rope’s end trying to curb that obsession and break through to that mystical, elusive land of “typical play” or “age-appropriate interests.”

I want to share a story. I share this story not as a therapist, doctor or expert in the field. I share this story as a dad who has been there. I share this story as a dad who has made mistakes and spends every waking minute of every day searching for the right answers. I share this story with full confidence that many will disagree.

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There once was a boy. Let’s call him, “Eric”. Eric was diagnosed with autism at the age of 2.5, and, like most kids on the spectrum, developed limited and deeply intense interests. Eric became fascinated (fixated, obsessed) at a very young age with “Sesame Street” characters.

By the time Eric was 4 or 5, his daddy started to become seriously concerned with hisfixations. Terms like “age-appropriate” and “typical imaginative play” were Googled regularly. Eric’s daddy started to grow desperate to break his fixations. Eric’s daddy started making mistakes that caused pain for Eric and had no success in curbing these fixations — mistakes like hiding Eric’s favorite toys and becoming angry with his son for not playing typically.

Then Eric’s daddy had a breakthrough and decided to try a new strategy:

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Just Chill Out.

Eric’s daddy decided that “age-appropriate” was overrated and “typical play” was an elusive, nebulous concept that only served to add tension and anxiety to his family. Eric’s daddy decided to accept his son’s quirky fascinations rather than attack them.

Well-meaning friends, family and experts quietly questioned this strategy. Hell, Eric’s daddy regularly questioned this strategy. But they plowed on… Just Chilling Out.

Eric’s interest slowly began to expand to other animated characters. But “typical play” remained elusive as Eric’s preferred activity remained lining up his favorite characters, inspecting them and stimming on them. Eric’s daddy now questioned the wisdom of not nipping these fascinations in the bud early on.

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It wasn’t easy, but he kept on Just Chilling Out.

As the years went on, Eric’s Daddy grew pretty skilled at wiggling his way into Eric’s world of fascinations and incorporating them into daily lessons and “typical play.”  He also got pretty good at knowing when to back off and leave his son to explore his world on his own.

Slowly, almost imperceptibly, Eric began to show signs of imaginative play. Stimming sessions began to morph into detailed models of favorite scenes.

Soon, Eric began to incorporate dialogue into his models, and they grew into complete reenactments. His style of play expanded to what any expert would recognize as “imaginative” and “typical.”

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Then something even cooler happened. Eric started to deviate from the scripted reenactments of the scenes and pursue his own narratives, incorporating and intermingling different characters in a way that was unmistakably “imaginative.”

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Finally, Eric began asking his daddy to join him in his play. He began seeking out creative ways to expand his play using props and craftsmanship that blew his daddy away.

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That’s where Eric, now turning 10, and his daddy are today. Having fun, imagining and learning from each other… and continuing to Just Chill Out.

This post originally appeared on Bacon and Juice Boxes: Our Life With Autism.

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A Letter to the New Autism Parent

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Welcome to Club Spectrum! You didn’t want to be here. Don’t feel bad about that. No one signs up for this gig. Think of it this way — at least you now know what the Hell is going on.  Better than not knowing at all. Mama Fry ain’t no expert, but I do have some tips that help you from going crazy.

1) Pace yourself. You are about to start a never-ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that.  Avid reader? Go fire up that Kindle or go old school and buy a few books. You’re going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check-your-brain-at-the-door novels.  Know it’s okay to get absolutely nothing done on some days. Or weeks.

2) Get off the Internet. It can scare the crap out of you. Seriously, stop playing “Dr. Autism Google.” You’re looking for the autism cure needle in a Internet haystack. Step away from the search engine.

3) Get on the Internet. I know, opposite advice. Here’s the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X, Y and Z. You’ll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter and online groups are awesome. Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don’t you go Googling “melatonin” yet. You read this all first, buddy!). Autism parents/caregivers are always awake somewhere on the planet.

4) Be prepared to hear a lot of advice you did not ask for. Warning: it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.

5) Respect your elders in the ASD world. Now don’t go taking their world as gospel but recognize what they do works for them. You’ll see why as you earn your stripes. The kiddo is 8, and we’ve been dealing with all things autism since he was younger than 2. Trust me, newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number four? Don’t be that know-it-all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6) Accept the fact that you are going to try stuff that is totally not going to work. That miracle thingie you just read about in a chat group won’t do jack all for your kid.  Meanwhile every other kid who has, is thriving. It’s the luck of the draw with this, folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.

7) Autism is effing expensive. So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don’t be afraid to ask for therapy and/or lessons for something as gifts. These folks care about you and your kid. They’ll be happy to know what they bought is actually getting used, not sitting around collecting dust.

8) Accept that some folks who buy gifts for your kid won’t do the above. You’re going to get a lot of gifts that your kid won’t even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, your kid might like it. Or donate it. Regift it. Return it for therapy cash.

9) Be open to doing stuff you think is ridiculous. You really just don’t know what your kid is going to respond to. Give it an honest college try before you realize if it’s a hit or a miss.  This means diet, meds, therapy, supplements, etc. Just try.

10) Take your kid out everywhere. I’m serious. It may be small trips at first but it is the best thing you can do. You’re teaching them coping skills. Life happens. People have to food shop, go to the bank, post office, etc. You would be doing it anyway if your kid didn’t have autism. Know their limits of course. Baby steps first. Today, it’s a trip to buy milk. Another time, maybe it’s a trip to the pet store and the library. Life from now on will take military-like planning. Warn them what’s coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to “11.”

11) Allow yourself a pity party. Moan, cry, rant and rave and do it when you need to. More than once.  Just remember you still have a kid that needs you. So don’t dwell in it too long. If you find yourself doing it too far too frequently, know when to ask for help. Be it from a partner, family member, friend or doctor. Yes, this isn’t what you planned, but it’s here. So now what? Exactly.

This isn’t about getting through it to an end point. This is your life now. This is your new normal. I can’t promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.

This post originally appeared on Autism With a Side of Fries.

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A Train Conductor’s Sweet Act of Kindness for a Boy With Autism

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You could say this act of kindness stopped us in our tracks.

Matthew Mancil, a 12-year-old with autism, loves trains so much that he refers to himself as “train conductor Matthew.” And at the summer camp he attends in Clinton, Utah, he always waves to trains that pass on nearby tracks.

But last Thursday, instead of waving back or honking the horn, a Union Pacific Railroad conductor stopped his train to make Matthew’s day. He even gave the 12-year-old his own safety vest, gloves, sunglasses and lantern.

It may not have been a big deal to him, but it was a big deal to us,” his dad, Aaron, told KSL. “Matthew will always remember this, and he’ll probably be talking about this for the next two or three years.”

Watch the full story in the KSL video below.

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To the Garbage Truck Driver Who Stopped for My Son

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Dear Frank,

You have no idea the impact you have on a Wednesday. What you don’t know is that your presence has been a calming and reassuring force in our week for years now. No matter how good or how bad our week was, there you were every Wednesday reminding me that we could go on. The weeks I couldn’t count on anything, I could count on you, Frank, to light up my boy’s face. My 4-year-old son, Greyson, has autism. Some days it’s nearly impossible to get into his world. I still remember the first time he heard and processed the hum of your engine coming down our street. My son who barely speaks said to me, “I want truck.” You better believe we ran.

You broke into his world when I couldn’t, and moments spent watching you go down our street together brought him back to me. And almost every week after that first time he asked, I would hold my breath and wait and hope he would ask for you again — “I want truck.” And so often he did, and we would run outside in whatever discombobulated state we were in to see you.

I remember Grey started preschool this past fall. I was so sad and not at all ready to let go of my little buddy. I was mournful to say goodbye to our trash truck Wednesdays. And on that first Wednesday morning after the school year began, I heard your hum on our street as we were leaving for school. You came early, and we still got to see you. Suddenly I knew we would be OK.

Today I heard your melodic engine roar and hum, your brakes squeaking with each stop of your truck. We went outside and waited for you.

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And Grey’s eyes came alive when we finally saw you turn the corner onto our street.

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And today as you were driving away you abruptly came to a stop, reversed, and you opened your door.

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“I see you two out here every week,” you said. “Do you want to get a really good picture?” And you opened your world and your heart and your truck to me and my boy. You have no idea what that moment meant to me.

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I asked you your name, and I shook your hand when I really wanted to grab you and hug you. I tried to hold back my tears. I wanted to tell you everything but all I could do was squeak out, “thanks.”

Sometimes I worry — How will the world treat my boys? And today was a beautiful reminder that people are good — all because of you, Frank. I saw the way your face lit up with joy that my son put there, and I was so proud and so honored and so humbled to be a part of such a magical moment. Sometimes I hear phrases like, “People are so stupid,” or “crazy” or “mean.” To them I say — No they aren’t. You haven’t met Frank.

Love,

Chrissy

For all of February, 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.

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How Special Needs Parenting Is Better Than Sea Monkeys

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Like so many are, this is a story about love. It’s also about worry, doubt, confusion, acceptance, tiny and gigantic miracles, friendship and family, joy, celebrations and life. Oh, and sea monkeys.

Mostly though, it’s about love.

Five years ago, while the country headed home from “oooh”-ing and “ahhh”-ing over Fourth of July fireworks shows, my son, Tucker, was born. I spent hours marveling at how there was no way that his very small ittybitty, teenyweenie perfect little face could not be a single bit more perfect. I knew that nobody had ever loved anybody else in all of the history of time as much as I loved him. Except, you know, the people who have and do.

I had a baby. One that I never ever thought was possible. One that I was scared to hope for but dared to hope for, anyway.

I said, “Thank you.” I said, “Please.” I said everything and felt everything but mostly was like, “WOW, LOOK WHAT I DID!” and was unbelievably thankful because 40 years is a lot of years to wait to be a mom.

Time passed, a kazillion baby books were consulted and early milestones were met.

We celebrated. We worried. We doted, and we played. We lived.

We lived while the whispers of worry and doubt over unmet milestones got louder, and the unmet milestones got bigger. Or at least more obvious.

We lived while it was finally time to seek doctors and evaluations and teachers and early intervention, and we lived and died — but mostly lived — when we heard The Words.

The Words that Tucker was and is and maybe-probably-always-will-be developmentally delayed. We lived through The Words.

Autism Spectrum Disorder. Severe speech and language delays. Atypical development. Typical in some areas. Atypical in so many others. Which, in itself, is atypical.

Even though it doesn’t actually happen that people become special needs families overnight, it feels that way, because until the doctor or the teacher or the evaluator, or all of them — all at once — say it out loud, you think your kid and your family is just like all kids and all families.

Then, you feel scared.

Maybe a little bit like you totally screwed parenting up and maybe this whole thing is your fault because if you’d just talked to him more, or made him go to daycare to socialize, or maybe if you’d let him watch less “Caillou” when you selfishly took a shower — maybe — he really would be the imagined just-like-all-the-rest-of-the-kids kids.

But, probably not.

And everything is scary and terrifying all over again, just like that first night in the hospital when you realized that maybe being a parent is just as terrifying as it is amazing.

Everything is scary and hard and worry-filled and a little bit dark.

Until it’s not.

One day, you wake up and realize that life looks exactly as beautiful and messy and disorganized as it did before you heard the words. The sun still shines, the clouds still cloud and the laundry still sits there, undone. Your kid is still the best boy ever.

You meet people. Therapists and other parents and other kids and, while they have lots of similarities to each other, they have lots of similarities to everybody else in the whole wide world, too.

The Big It gets less scary. And mostly, hardly-at-all even sad any longer, when you know that your kid won’t learn to ride a bike or a scooter until later, or possibly never, and that’s not what matters anyway, because he’s still totally perfect. As perfect as all of us are.

Which is not that perfect. But it’s magic and happy and a trusting little boy’s hand gripping your own, full of confidence that you’ll lead him through the parking lot safely. And maybe even through life safely.

Being a special needs mom means giving up dreams. But it also means that the new ones are just as awesome.

It’s awesome, as in, please don’t feel sorry for us.

In fact, I’d even say that being a special needs mom is better than Sea Monkeys.

Because Sea Monkeys sound like the coolest thing, ever. I mean adorable little monkeys swimming around a fish bowl?! Playing with each other and playing with you, and smiling at you and having their cute little monkey faces have adorable, unique little features so you can tell them apart and know that the one named Benito will never be mistaken for Carter, because Benito has that little tuft of Sea Monkey hair!

The stupid Sea Monkeys are not cool at all.

Nor are they monkey-like in a single, solitary way. They are so un-monkey like, in fact, that not only do they not have monkey hair, or arms or little monkey hands with which to wave to you from their sea in your room, they have no faces.

And you can’t tell them apart at all and obviously they are the worst pets ever invented.

Being a special needs mom is the opposite of Sea Monkeys because when you think about being a special needs mom before being one, it sounds like it will be hard and sucky and hard and judgy and hard and maybe you might even think that if your kid can’t do the stuff you had always dreamed about doing with him, that it wouldn’t be fun. You think it might be as faceless (because, until now, it has been, as the Sea Monkeys really are).

Except that it’s not sucky — it’s full of faces and expressions and love, and it is fun.

It’s magical and wonderful and amazing and beautiful and even better than Sea Monkeys would be if they were actually little Benito and Carter with their funny little monkey faces, being the friends you’d hoped for.

It’s better than you’d even think about dreaming for.

One day, you start planning a beach vacation. Because the little baby with the ittybitty, teenyweenie perfect little face that could not be a single bit more perfect is turning 5.

Whoever said that the moments are boring and that the years are too short was right.

I love the moments, though. Because these moments, right here, are lifetimes. Full of wonder, light, and are, my friends, the faces of 5.

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We have had pool time and beach time,and water park time and flying.  We had boardwalk roller coaster rides and fearlessness (Tucker’s, not mine).

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We had swinging, high up into the air.

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We’ve had heart-stopping ocean moments, when Tucker was twisted and turned in the post-hurricane waters that left me shaking and crying and him asking to do it again.

We have a funny, crazy, amazing, shy, crawling-on-his-knees-to-avoid-his-best-friend’s-grandparent’s-faces, daredevil boy.

We are celebrating special needs, because we are celebrating this kid.

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We are celebrating Five. Saturday night, one night too late due to the hurricane, we celebrated with a fireworks show on the beach. I sat there, my legs resting in the cool night’s sand, with my not-so-little-but-still-little little boy in my lap, snuggled against the ocean breeze, “oooh”-ing and “aaah”-ing to the fireworks that we missed five years ago for his birth, and life was perfect.

Firework2(pp_w307_h338) We were young and old and everything in between.

Connected to all of the betweens and all of the people, everywhere.

We were just the regular family, and we were the best family. We were the best and the youngest and the oldest and the most complete.

And when Tucker asked me what the fireworks said, because maybe the patterns looked like words, or maybe, because he, too, felt the importance of the moment and wanted to be sure he wasn’t missing the message. I answered, “They say, ‘Happy Birthday, America. Happy Birthday, Tucker. Happy Birthday, This Life.’”

He smiled.

And I knew, again, that this is exactly, perfectly, my perfect, perfect boy.

My perfect, perfect, messy, messed up life.

As the firework’s peak ended, and people began to get up and leave, we sat, sighed and gave thanks.

Tucker looked at me and said “Hm. I say?”

“Yes, Baby? What you say?”

And he said, “I say, thank you fireworks.”

Yes. Thank you, fireworks. Thank you, life.

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This post originally appeared on Finding Ninee.

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The Real Battle Special Needs Families Face

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“It’s all well and good for higher functioning people who have autism to talk about how unique and precious their lives are and how important it is for everyone to accept their differences, but for families who are dealing with low functioning individuals, this is not their experience. Those families are in an ongoing battle.”  

The above is a version of a comment I’ve read countless times over the years.

Aside from the curious conflation of the first part of the sentence discussing autistic people’s sense of themselves, to the last part, which discusses the family’s point of view, as though the “low functioning” individual is incapable of having a point of view, there is no point arguing with anyone about their lived experience. However, do not make your experience mine. This is NOT my experience of my child. This is NOT my family’s experience. This is not the experience of many, many families I know. And do not assume this is my daughter’s experience either. Just because this is the way you view your child or sibling or relative or the person you know, does not mean that is their experience of the world or their family member’s experience.

I do not assume that because I choose to celebrate my daughter — every family and every autistic person will agree or feel the same. Nothing is as simple as any one-word descriptor. The ongoing battle I find myself in is with the inaccurate information about autism and autistic people. The ongoing battle is not my daughter’s neurology, it’s the misperceptions people have that they then apply to my daughter. The ongoing battle is not about her at all, it’s about functioning labels, what people continue to say and believe autism means, how people view disability, the stigma attached and how people fear, reject and punish what they do not understand.

That quote? That is exactly what I am battling – the idea that because someone cannot use spoken language, they do not have an experience of the world, the misconception that if someone cannot interact with another person in a way the majority of the population can understand or recognize, it means they are less than, unworthy and therefore excluded. Exclusion is the battle. Non-acceptance is the battle. Intolerance is the battle. Hatred is the battle. Prejudice is the battle. Discrimination is the battle. Misinformation, inequality, superiority, arrogance, ignorance and all the ways in which people then behave because they believe these things and all the things they tell themselves that lead to any of the above being acted upon — that’s the battle.

This post originally appeared on Emma’s Hope Book.

 

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