The Moment I Saw Through the Eyes of My Son With Autism

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We recently went to visit a family friend (Uncle M.) at his apartment. This particular friend became blind as a baby and wears sunglasses and uses a walking cane. In the 20+ years I have known him, I don’t remember him ever once complaining about it or feeling sorry for himself. In fact, he is one of the most independent men I have ever met! He is the sweetest man ever and the hubby and I think of him as a brother and the kids think of him as an uncle. Uncle M. has owned his own place for over 20 years, has a full-time job in Washington, D.C. (he takes the subway), has tons of friends, a girlfriend and can play the drums (he played at our wedding).

Anyways, Dominic made himself at home and started running around in the apartment. We were telling him to stop, but it wasn’t until Uncle M. told him, Be careful, buddy!” that he actually did. Since we were visiting around dinner time, we were debating whether to go out or order carry-out. We opted to go out for dinner at a favorite pizza place nearby. Dominic and Uncle M. sat next to each other at the table, and I was sitting across from them. I was a little concerned, because I usually sit right next to Dominic to make him feel comfortable and to kind of keep him “in line.” We really didn’t need to be concerned or worried. Throughout the meal, Dominic snuggled up next to Uncle M. multiple times. They both were definitely enjoying the yummy pizza. When we went back to drop off Uncle M. at his apartment, since it was late, we decided to say our goodbyes in the parking lot. When Dominic gathered us all in for a “group hug” and started singing, “I love you, you love me” from “Barney,” I felt like I needed a tissue.

Uncle M. doesn’t “see” Dominic as a child with an Autism Spectrum Disorder, and Dominic doesn’t “see” Uncle M. as a man who is blind. I think often about what it must be like to see the world through Dominic’s “eyes.” I know one thing — Dominic can immediately pick up on how comfortable someone is around him. I’m guessing Uncle M. can too. I wonder how many people have judged him, solely based on the fact that he is blind. I thought it was super duper awesome when we went to the restaurant to eat pizza and not one person stared at him (or Dominic).  Sadly, though, many in our society “see” the special needs first and then the person.

Wouldn’t it be awesome if it was the other way around?

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This post originally appeared on bountifulplate.

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My Son Has Autism. This Is Why I'm Lucky.

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I will be the first to admit this is not the life I thought I would have. I mean, come on. Who signs up for it? Even teachers, therapists and other professionals that work with our kids clock out at the end of a shift. Hell, half the reason I left the field after the kiddo was born was because autism was burning me out. HA! Autism Mafia was like, “Oh no, girl.  Just when you think you’re done with us, we pull you back in.”

So yeah, some days are less than ideal. I might not always show it online but trust me I am far from an Autism Pollyanna. However despite the sleep, food and behavioral issues, I’m pretty lucky. No really. Let me break this down for you.

I’m lucky it’s 2014. We know so much more now — way more than even a generation before us did. My kiddo wouldn’t even be in my town’s school district had this been like it was when I was his age. More likely I would of been encouraged/pushed into sending him away to some facility where visits would be rare if at all. And the care? Let’s not even think about that. As much as I joke from time to time that the kiddo is available for rent (two night minimum) or that a band of kidnappers would probably return him after having him for a day, I really can’t even wrap my head around this idea of him not living here.

I’m lucky for the Internet. Again, this goes with the 2014 thing, but when it’s 1 a.m. and I can’t sleep because I am too busy having insomnia over my kiddo or he has decided it’s a sleep-optional night, another autism parent is up somewhere in the world. Or there are blogs to read. Or good quality crap TV to watch online. The computer can be my lifeline and my mindless entertainment. I can just lurk or pour my heart out onto the page like I am now. Thank God for blogging. I think I’m slightly less annoying to my family because I have somewhere to get this all out. Or at least they see other people, say, “ME TOO!” and realize I’m not just making this stuff up. I have seen a difference in them. Maybe they’re just afraid I’ll put them in the blog. I wield that like a sword then. I can make ya a hero or a villain folks!

I’m lucky I have a husband that stayed around. So many do not. So many bail. Not him. He gets tired. He is never sure what kind of scene he’s going to walk in on when he comes home from work. (I suspect he checks in on Facebook before he heads home for the night. I would.) Even when he’s off work, he’s just on another shift at another job. This boss is far more demanding, the hours suck and this daddying job won’t even match a 401K. He’s here doing it with me though. At least I have a coworker I get along with and I can say, “WTF?” too. Plus, he’s kind of cute, and I’m allowed to sexually harass him. In fact, he encourages that.

I’m lucky my son’s school district does not suck. He’s been going since he was 3. Off the top of my head I can think of maybe three or four problems that needed addressing. He’s 10 now. That’s a pretty good record when I think about it. Before you get yourself in a twist thinking, “Oh, her kiddo must be much more high-functioning and needs less,” nope, you couldn’t be more wrong actually. I am very grateful we live where we live. We go without quite a bit in areas because being in this district means that much to us. Yes, we go into IEP meetings prepared but I’ve never left one enraged. We get to “a place of Yes,” I guess you could say.

I’m lucky because this could be more complicated. He could have several other health issues to boot. I know several families who are dealing with autism and “fill in the blank” medical challenge — seizures, heart problems, diabetes, vision and hearing loss. Again, he’s 10. ONE ER visit. Just the one. I know, right?  How the heck am I managing that? Knock wood, I haven’t a clue. I’m just lucky I guess.

I’m lucky because it has been worse and it got better. I’m lucky because I have gotten used to the way we live. I’m lucky because my pity parties for one don’t last as long as they used to back at the start of all this. I’m lucky because I can find the humor now and then in this.

I’m lucky because even when it’s a really crappy day I can go to a drive-thru window and get an order of fries and make my kiddo happy. Whoever said money doesn’t buy happiness clearly never saw the look on my son’s face when given a side of fries. Thank goodness it’s fries he loves. Foie gras would of been a much more expensive food to obsess on. Sure wouldn’t of worked as a blog title either.

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

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Will You Help Me Show My Son He's Not Alone?

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Lately I’ve been really curious about what autism means to my 10-year old son, Jack.

I mean, I know he knows he has it. And we know he hates it. But what does it mean to him, exactly?

So, I conducted some high-level research. It went something like this:

“Jack, what does autism mean to you?”

(Ears covered, face screwed up.) “Stop TALKING about this to me.”

“But what do you think it means to have—”

NO MORE TALKING.”

So I had to go underground with my investigation, if you will. I had to resort to strictly observing him, examining and noting his reaction in certain situations and circumstances.

And as best as I can understand, Jack thinks autism means you earn things.

Let me give you an example. Last week I had to bring Jack for his eye appointment, which is another post entirely and something I’ll tell you all about it when I’ve fully recovered from the trauma of listening to Katy Perry for the whole ride and pupil dilation and “That man’s shirt looks dirty.”

The appointment was at 12:45. We needed an hour and 15 minutes to get there on time, which meant we needed to leave by 11:30. This left me plenty of time to take a 9:00 Crossfit class, go home, shower and pick Jack up from karate camp.

There was just one minor autism-related snafu: Jack remembered that the last time we went to his pediatric ophthalmologist appointment in Boston — on Tuesday, December 10th at 10:30 a.m., when the doctor wore a black dress and we were in the exam room with light blue walls, to be exact — he stayed home from school all day. And so now he wanted to stay home from karate camp, too.

This did not parse well with my plans for working out.

But see, I have experience with this kind of thing. I know what I’m doing. I’ve read all the books and done all the research about child rearing and autism and parenting, and so I did what every good mother would do in this situation. I reached for the bribe.

“Jack, if you go to karate camp first I will buy you Snow White on DVD.”

“The Disney Special Platinum Edition or the Two-Disc Extended Edition.”

“Uh, whichever one you want,” I told him, making a mental note to myself to limit his time on Amazon.

“NO! That is EARNING! I won’t EARN A DVD. People with autism earn things.”

You see? He has somehow gotten the idea that having autism means you have to earn things. It should be fun trying to convince him to get a job someday.

When we first started talking to Jack about his autism, we tried to explain it in terms he could understand. We told him his mind works differently and sometimes his body moves because of something called self stimulation.

Naturally, he had a lot of questions. He wondered if he could die from it and why he has it and if he’ll ever get rid of it. He also asked, “Who else. Has autism.”

We kind of skipped over that one.

Then one day last spring he came off the bus and said, “I am the only one. In my class with autism.” And that afternoon, it dawned on me: he feels alone in the spectrum world.

Sure, I can tell him all the about the statistics. I could sit him down and say, “Listen, Jack, one out of  68 kids are diagnosed now, so there are literally a bajillion people like you, people who picture Wednesday as orange and remember what the ophthalmologist wore six months ago.”

(And yes, bajillion is a real number. I researched it.)

“Henry. Henry has autism,” he announced one afternoon. We’d just finished picking blueberries, and I looked over at my 5-year old — who was trying to see if one of the round ripe fruit would fit in his nostril — and  back at Jack.

“I can see why you might think that,” I said slowly. “But he isn’t diagnosed with autism.”

“Who else. Who else has it.”

“Well, lots of people have autism, Jack.”

WHO.”

What do I say?  Of course I know other kids who have it, adults even. But it is not my place to open that dialogue.

So instead, I try to point out autism’s more savory qualities: his memory and his kindness, his determination and his progress. But it does little to abate the obvious loneliness, the isolation of being the only one in his family, in his class, maybe in the universe diagnosed with spectrum disorder.

It’s as though I’m telling him this:

Jack you are a brilliant unicorn amongst us ordinary horses. You are so beautiful! We know there are tons of you out there — bajillions, even— but we don’t know how to show you. We don’t know where they all are. Oh, and magical unicorn? We don’t really get you. We don’t understand you. We are blinded by your colorful beauty but your tantrums scare the crap out of us. In fact, maybe it would just be better if you were a plain old horse like the rest of us. Then we could figure out how to teach you fractions.”

All summer Jack’s been telling me he wants his autism to stay a secret when he starts fifth grade in the fall. He wants to keep it from the teachers and principal and students in middle school. As of yet, I have not had the heart — or the courage — to tell him they already know, that something called an IEP and paraprofessionals and a modified course load have been in the works for a while now.

I never had a concrete plan or vision when I started writing this blog. Mostly I did it because my publisher insisted I start one to promote the book.

But it’s been over two years now, and looking back I guess I also did it so I would feel less alone. From the safety of my little office I could share my heartache and make my jokes and connect through cyberspace with other people like me who are also balancing autism and parenthood and play dough and swimming lessons. And if there was a smidgen of autism awareness to the whole thing, well, that was just a bonus.

But ultimately, I have failed. I have failed because, while I feel connected to a wider community of people, the boy sitting in the room next to me — the boy with autism — feels confused and scared and ashamed.

He feels alone.

More than that, he wants to hide something that is as fundamental and essential to him as his beating heart or his thinking brain or the freckle on his right forearm. He wants to keep autism a secret.

I wish to somehow show him that there are, in fact, a bajillion more people like him in this world. That there are boys and girls and fathers and daughters who cover their ears during fireworks and squint against fluorescent lighting’s blinding glare. People who have IEPs and aides in the classroom and battle anxiety’s fierce snake.

I want to show him that many of those same people play beautiful music and have jobs to earn money and love to go to the movies and always eat ice cream after dinner.

They are, in essence, just like him.

And so readers, I was hoping you would help me show my son he’s not alone. I was hoping I could call on my own community in order to expand Jack’s solitary world.

Would you click here to go to my Facebook page, and add the name of someone you know with autism in the comment section below this post?

Share as much or as little as you like. Share the name and age and of your son or daughter or neighbor or student or brother or maybe even yourself. Share a picture if you feel comfortable. Tell us where you live if you like, or add a little something that makes this person special.

I can’t wait to see what a bajillion looks like. I’ll even go first.

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My son Jack has autism. He is 10. He is as magical as a unicorn.

This post originally appeared on CarrieCariello.com.

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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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