The Hardest Part of Autism

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“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” Fred Rogers

Last year a friend asked me if it was hard and how I manage and if I ever just want to lose it. “It” being this whole raising a child with autism thing. Of course it’s hard and of course there are evenings I collapse on the couch or cry in the bathroom. But isn’t that true for all mothers? How do I manage? About the same as all other moms, I guess. I drink coffee every morning and hide chocolate in the sock drawer. But then she asked another question…

What’s the hardest part?” And I didn’t even have to think about it. Other people. When you’re dealing with an invisible special need, strangers don’t know about it. As much as I sometimes want to, we don’t pin a sign to Mareto’s shirt explaining his autism. So other people, particularly strangers, give us a lot of attention in the form of staring, dirty looks, snide under-the-breath comments and just overall judgment. I can feel it in the store when Mareto’s getting upset and I have to hide in an empty isle to calm him down. Or when he can’t sit at a table in a restaurant. Or when he blurts out, “Watch out for diesel ten!” when someone says hello.

author's son smiles and covers mouth outside on a swing

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But even the people who aren’t strangers can be hard. It’s not intentional, but unless they’ve had a lot of experience with autism, most people are largely uninformed. I get it, because up until two years ago so were we! So when Mareto licks the wall, or laughs at inappropriate times, or sniffs random items it can be awkward. The look of shock can sting, and I remember again this isn’t everyone’s normal.

These are all my issues, though. Because Mareto is unaware of these reactions, and most of the time they aren’t even directed at him. They’re directed at me. One evening my husband, John, looked at me and said, “I feel like people are thinking two things when we’re out as a family: your kid is bad and you’re bad parents.” That’s how it feels sometimes. It feels like people think we’re lazy or I’m not doing my job well and if I just tried harder he would behave differently. I felt so guilty when I realized that one of the reasons I was so excited about my other child, Arsema, being potty trained was that people might now see that we actually are capable of potty training and it isn’t laziness that’s keeping Mareto in diapers.

But do you know what’s even worse? When you take your kids to the playground and they’re having a blast. Your little boy notices a group of older children and runs to play near them. He bends down to pick up a piece of bark and his shirt rides up exposing the top of his diaper above his pants. And all the little kids start laughing and pointing and saying, “Look! That boy is wearing a diaper!”  Or when the 3-year-old looks at you over gingerbread houses and asks why your precious, funny and brilliant little boy is so dumb. Or when you realize he’s being physically bullied because he hasn’t learned the skill of tattling yet. These are the things that make me sick to my stomach. That moment you realize people are going to stop sneering at you and start sneering at your child hurts deep down in a way that takes the breath out of your lungs.

Now that Mareto is growing older, the differences are more apparent. They can’t be waved away or explained as typical toddler behavior. It’s a little more noticeable when a child the size of a 6-year-old isn’t potty trained. It’s a little harder to protect him from the bullies of the world. And that is now the hardest thing about autism –  my inability to shield him forever from judgment, ridicule and mean children and adults.

And the thing that makes it even more mind-boggling is that he is the sweetest boy you could ever hope to meet. He cares deeply about other people. He “rescues” his sister from nap time. He comforts crying children. He loves animals. He is friendly and kind and has fun interests. Yes, he has some hurdles in life that other people don’t have. But he also has a lot of awesomeness that other people don’t have. It comes to him naturally.

son and daughter playing outside

Mareto looking at the cat on the author's deck outside

So are the endless sleepless nights rough? Yes. Changing a 50 lb boy’s diaper isn’t my favorite. Getting Congress to actually accomplish something would be easier than getting my son to move beyond his three foods. But those things don’t matter much. Those would be the hard parts if we lived in a world where I knew my son was unquestioningly accepted and not just accepted but celebrated for who he is. If we lived in a world where people didn’t pass judgment so easily and were quick to love all people regardless and because of their differences and taught their children to do the same… then the hardest parts of autism would be much different. But we don’t live in that world. And as much as I want to keep him close by my side and never leaving the safety of our home, I know I can’t. He has far too much to offer (and teach) the world for me to do that. He has a joy and innocence and compassion and love and a curiosity that is infectious. The world needs him and more people like him.

mareto smiling

This post originally appeared on LaurenCasper.com.

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Mall Takes Action When Santa Rejects Little Girl With Autism

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For this 7-year-old with autism, a trip to visit Santa was not at all what she expected. But a mall in Mission Viejo, California, took the right steps to defend her and her friendly service pit bull.

Abcde (pronounced Ab-Suh-Dee) Santos, was waiting in line to see Santa at The Shops at Mission Viejo on Sunday when she was denied access to St. Nick, according to ABC News. The man playing Santa allegedly disliked Abcde’s pit bull service dog, Pup-Cake, and refused to see the little girl even after her mother offered to take the dog outside.

Abcde has autism, so standing in line with her family for 30 minutes was more difficult than it would be for most children.

The Santa allegedly made comments like, “Those dogs eat people,” and then said he couldn’t see the girl without the dog because of his allergies, according to a statement Abcde’s family released on Facebook.

 

Family friend and service dog activist Julie Miller, who’s in charge of the Pup-Cake the Service Dog’s Facebook fan page told The OC Register that Abcde was “heartbroken” by the incident.

 

The family contacted representatives from the shopping center who responded quickly.

We do not condone the behavior displayed by Santa and have worked with our partners at Noerr, the company that hires our Santas, to replace this Santa with one that is more compassionate to our guests’ needs,” The Shops at Mission Viejo posted on its Facebook page.

 

 

 

Miller says the family hopes the incident will serve to teach others about their rights.

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“They want people to get educated, not about autism or pit bulls, but about the Disabilities Act so that little girls like Abcde won’t go and see Santa and end up crying,” she told the OC Register.

The Shops at Mission Viejo also added:

Every year, The Shops at Mission Viejo hosts Caring Santa experiences, a sensory-friendly environment for families of children with special needs to safely enjoy the time-honored tradition and magic of Santa. This year, The Shops at Mission Viejo is expanding its Caring Santa program beyond the previously-scheduled Sunday, December 7 event. Additional Caring Santa reservations will be available tomorrow after 9 a.m. at this link: http://caringsantasmv.eventbrite.com

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The Day I Became an Advocate for My Child

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On September 11, 2014, I watched as my 22-month-old daughter was held down by five hospital staff and wrapped in two blankets like a burrito to have an EEG. She screamed and cried and tears fell down her face like she was being hurt. They kept saying, “This doesn’t hurt her.”

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Obviously they didn’t get the memo– she’s autistic and sensory-sensitive. Just having someone touch her hurts her; clothes hurt her, putting socks, shoes and a coat on hurts her. They were hurting her.

As I died inside.

I called out to her, “Zoey, look at Mommy, I’m here… I’m here, I love you… you’re OK.”

She didn’t look for me or look at me once; she just stared out into the room and screamed and tears fell from her face.

If this wasn’t bad enough, the doctor who was on the floor that day then came running into the room and screamed, “Stop! This can’t happen today. We don’t have a crib.”

Any composure I may have had quickly vanished. I broke down, and I cried, and I said “No. I will not let you do this to my baby again. I am not leaving. I was promised a crib. Go find a crib, and if you can’t, then I will sleep on the floor and hold her bed to make sure she does not fall out… but I am not leaving.”

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This all happened while they were attaching the flat metal discs to her head  — and they only had half of them on.

We had this procedure scheduled the day she was diagnosed, and I had a child advocate from the hospital in constant contact with me. I’d explained that Zoey needed a crib, and I was told we would have one.

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So they finished the procedure, and they unwrapped her from the blankets that were used to restrain her, and she was able to sit up. I gave her some Fruit Loops, and I watched as she crunched away.

All I wanted to do was hold her. She wouldn’t let me.

A nice woman who visits the hospital with her dog every month stopped in our room and asked if my daughter would like a visit, and I said sure.

This is the moment when any amount of denial I had quickly vanished.

I watched as this beautiful yellow lab approached the bed, my daughter didn’t look up or even move. I watched as this big dog jumped up on my daughter’s hospital bed and start eating the cereal around her feet. Again, my daughter didn’t look up or even flinch. My 22-month-old nonverbal daughter was in her own little world; she was on sensory overload and traumatized, and this dog wasn’t going to pull her out and neither was a hug from her Mommy.

I swear, a little piece of me died that day. And I promised, never again. This is why I fight. This is why I advocate for autism awareness. I do it all for her.

Follow this journey on Melissa’s Facebook page.

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What a Mother Doe Made Me Realize About Our Autism Journey

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It’s early morning at my parents’ house in the woods, and I find myself with a few moments of quiet to enjoy a cup of coffee and the serene view from the dining room windows. Whether it’s the aftereffect of a nice Thanksgiving weekend or the fact that my son is sleeping in (one of the few things you can be thankful for when your child hits the teenage years), I find myself reflecting on the many gifts in my life worthy of thanks. As a blog post about gratitude comes into focus, I look up to see a small doe standing on the other side of the dirt road. Her ears are perked and alert. She peers down the road cautiously, not twitching a muscle. She’s beautiful. And then, from the brush behind her steps a small fawn, and then another.

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The doe’s alertness takes on new meaning – she’s watching out for her little ones this morning. She doesn’t turn back to them, but sensing their presence, she moves with them quickly and safely across the street. I watch for the next few minutes as the doe leads her children around the side of my parents’ property, just outside of the wire fencing. She’s constantly on guard, pausing every few feet to survey the area, her young ones following, relaxed and curious in her wake. I smile at the connection I feel with this mother deer, as she pours so much energy and effort into protecting her children from whatever dangers might lie in their path. We have that task in common – although, who am I kidding? She looks much more stoic and majestic in her role than I ever could. But I do have something she lacks. While I’m also determined to help my child navigate through the world safely, I never travel alone. I am grateful…

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…for my husband, who’s by my side on this journey. We make a pretty good team, and I cannot imagine raising our son without this man’s love, support, humor and friendship. Knowing the divorce rate for couples that have kids with disabilities is higher than the average, I’m exceedingly grateful he’s been there for me going on 20 years.

…for our family, who embraces our quirky kid without hesitation and loves him as much as we do.  You would think this would be a given – we’re family, after all – but I know of many who are not so lucky. Difference and disability are not always so easily accepted and understood, even by those who are supposed to love unconditionally. I’m grateful to have family and close friends that support us as parents and never fail to make sure my child knows he’s welcome and loved.

…for my comrades-in-arms – the other moms in my life who remind me that I’m not the only one walking this road.  Moms who understand there’s a time to be a warrior mom and a time to calm the hell down. Moms who know our interactions with our children are sweeter (and saner) when we can find a few precious moments away from them too. Moms who simultaneously despair over their children’s challenges and cherish the beauty of their uniqueness – and who can find humor in bumper stickers like My Autistic Kid Will Lick Your Honor Student” [Thanks, Laughing through Tears].

…for my son’s incredibly gifted team of therapists and teachers – past and present – whose commitment to my child is a constant source of inspiration. I’m often in awe of their creativity — when their brilliant ideas transform an impossibly distant goal into a mastered skill, because they take the time to discover what clicks with my kid. If I get discouraged, their enthusiasm for the challenge and their confidence in him reenergizes me to keep pressing onward.

…for the people in my community who don’t even know me, but who make my job easier, just by being kind. There have been many times when a stranger’s patience has mitigated much of the worry over caring for my child in a public setting. My thanks to the elderly gentleman at the sign-in table for a recent community event who didn’t scold my kid for putting his foot up on the table, but who calmly offered to tie his shoe for him instead. And to the woman sitting at an outdoor restaurant who could have complained when my son stole a grape from her plate, but who laughed to dismiss my embarrassment and instead handed him a few more.

I’m thinking about all of these amazing people in my life as I watch this beautiful, solitary doe and her fawns make their way past my mom’s greenhouse and out of sight. I say a little prayer for her success, hoping that this mother is able to lead her children safely through the day; and, I send out a message of gratitude for my own “herd,” knowing that my chances of securing safe passage for my son are a little brighter because of all the help I have along the way.

This post originally appeared on Stay Quirky, My Friends.

For all of December, The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
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What I've Figured Out So Far About Autism and Christmas

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Christmas in our home probably looks a lot different than it does in “typical” homes. We don’t leave cookies out for Santa or put on a big production about him coming. And when it comes to toys, well it couldn’t look any less typical.

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My 7-year-old son has an obsession with things that are similar. Blocks, cotton balls Q-tips, marshmallows, spoons — basically any group of objects that are the same. He likes to take these objects and pour them from one bowl into another. At any given time, if you walk into our home, you will more than likely see him with two bowls and whatever random objects he’s selected for the moment. He’s had this fascination for as long as I can remember. I would be lying to you if I told you it didn’t bother me, because it does — or rather it used to, a lot

We’ve spent a lot of time in therapy over the past few years making attempts to try and get him to engage it typical toys like trucks, games, action figures. Every now and again, he’ll show an interest in something typical, but it’s rare. For the parent of a child with autism it can, at times, be hard to determine the difference between trying to teach them to try new things and attempting to put a square peg into a round hole.

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The truth is, in the past when we’ve made these therapeutic attempts to try and get him to like typical toys, there’s been this tiny little tinge in my belly that says, “You’re trying to put a square peg into a round hole.” I remember reading a quote (I forget who said it) that essentially said, “The problem with pounding a square peg into a round hole is that you’re destroying the peg in the process.” That was a statement that had a pretty profound affect on me. That quote forced me to look at why this mattered so much to me. This entire time, had I been hoping to change my square peg into a round one? Before my son was born, I’d always assumed he’d be a round peg.  Everyone gets a round one, don’t they? I didn’t know anyone with a square one. I mean sure, I’d heard of square pegs, but square pegs are what happen to other people, right?

Well, as it turns out, I didn’t get a round peg. I got a square one. The day I found out I had a square peg, I was shocked and, truth be told, scared… damn scared. There was never a question about whether or not I’d be able to love him; I loved him the second I laid eyes on him. I was scared about whether or not that love would be enough. Could I be enough? Would I be able to give him every thing he needs? Could I embrace his sharp edges? Would I be able to reach deep into his corners? Along this journey we call autism, I’ve learned so many lessons, and one of the more important ones is this: to try and somehow force him to be round was a failure on my part to celebrate his square. 

photo.PNG-5 We no longer try to force typical toys in therapeutic sessions. Instead, sometimes I’ll buy him a new toy and if likes it, great! If he doesn’t, I’m not going to force it. Period. So that brings me to Christmas in our house. Finding presents for my little guy isn’t always easy. I spend a lot of time in the crafts store finding some things I think he’d like. And the upside to this autism-quirky-square peg of his is that I’m not in the middle of the toy section challenging another parent to a dual over the latest and greatest toy that all the round kids want. That’s what we in the biz like to call “winning.”  No, most likely you’ll find me alone somewhere in the crafts section stocking up on Popsicle sticks, soft craft poms or foam shapes. As I’m shopping for my special little square Christmas, I find myself thinking, “Maybe Christmas doesn’t come from a store, maybe Christmas perhaps means a little bit more.” (Who doesn’t love a good Dr. Seuss quote, am I right?) Christmas is a time for celebration! And in our case it means celebrating the gifts you receive, even if they’re not quite what you expected. Some of life’s greatest gifts are the ones you never saw coming. Celebrate your square.

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To the Stranger Who Gave Me 'the Look' When My Son Had a Public Meltdown

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I got a look today from a woman as we were leaving the grocery store, but it wasn’t the usual look. It was a pinched smile, raised brow and sympathetic gaze of someone who, if nothing else, “got” that my boy was miserable.

I was alternating hips so his headphone-wearing self wouldn’t give me a black eye, walking full blast toward the parking lot.

And she got it.

She got that he wasn’t wailing and screaming at the top of his lungs through the aisles because he thought he could manipulate me. He wasn’t thrashing because he thought he could win. He wasn’t crying and snotting and choking because he needed a stronger momma or a Bible-thumping on his ass.

He was in a full-on meltdown and long, long past rationalizing a way out of his torment.

I didn’t know her. I don’t know that I would recognize her again if I saw her. I have only a vague memory of light hair pulled back tightly from her face. Or maybe it was brown and just highlighted. I don’t know.

But I saw her.

And I was grateful.

There are lots and lots and lots of blogs and articles online complaining about the rudeness of other people when autism affects their day unexpectedly. I’ve had a few of those incidents myself but only a few.

The rest can usually be categorized as either blank-stared shock or intentional, awkward avoidance. A small percentage — usually someone of the more, ahem, grandmotherly persona, occasionally attempt to cajole him into distraction, which doesn’t work and in fact usually makes the situation worse, but is actually very thoughtful.

The rarest of the rare though, the golden response, the creme de la creme of acknowledgment… is sympathy.

Not sympathy for my child with autism, but sympathy for he’s-upset-and-his-momma-is-sad-that-he’s-upset.

It might come from a place of experience or empathy or just flat out kindness. I don’t know. And I don’t know because it is so rare.

It’s a lonely feeling, having a child you love fall apart in front of you when you know the only thing you can do to make it better is push through or leave. It’s isolating. I can handle it like a badass, don’t get me wrong. I can carry that 45-pound, writhing 5-year-old superhero under my arm like a football all the way through a super Wal-Mart and out through the parking lot like I carry the mail. I can stay calm and keep my head up, my keys ready, his shoes on and still make eye contact with anyone in my way. There’s no defensive lineman that can block a Spectrum Mom.

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I can usually even find my car in the lot the first row I walk down, too. This is part of my natural awesomeness — don’t be intimidated.

But no matter how well I can manage grocery shopping during a nuclear meltdown, I still feel the social isolation of it.

Deeply.

So, Ms. Eye Contact, I just wanna say thank you. Thank you for holding my gaze long enough for me to smile back. Thank you for breaking me out of the zone and spending two seconds of your day to acknowledge me.

Thanks for seeing us.

Love,

Spectrum Mom

young boy wearing pajamas

This post originally appeared on Letters From a Spectrum Mom.

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