A small girl with a bandage on her head sits on a hospital bed

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.”

10409268_476936952444304_2203238225687683416_n 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.”

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.

10402042_476936962444303_2286321493471088247_n 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…

…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.

photo 1 (1) 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.

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.

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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Why I'm Thankful for the Special Needs Community

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I’m thankful for the special needs community…

For the teachers, therapists, staff, and paraprofessional extraordinaire, “Mrs.Z,” who have all cared for, assisted, taught, reassured, laughed with (not at) and hugged my big boy for the last four years. Ethan’s accomplishments couldn’t have come without the nurturing experiences we’ve had at our school. Every year has been better than the last, because as he keeps growing and changing, his team keeps finding ways to work with him, encourage him and meet his needs.

For the two most amazing school bus drivers ever, taking the time to forge a bond and build a relationship with my often quiet, reserved, child. Thank you for keeping him safe on the bus ride to school, for always making him comfortable and for always trying.

mother smiling with two children outside

For the counselors and staff of Camp Sunrise, (specifically Meghan, Tara, Alex, Alec, Jorian, Liam and Anna) for giving my son the same opportunities available to typical kids… and for allowing siblings without disabilities to register. Both kids get to share the same fun and strengthen their sibling bond for seven weeks each summer.

For the many local and national autism organizations that have partnered with businesses and entertainment venues to provide training and/or sensory sensitive events for families to enjoy. Whether it’s a sensory friendly movie, a speed pass at an amusement park, special seating at a MLB game, specially-trained hair stylists, surfing and swim instructors, or aware wait staff or sales associates, your accommodations are incredibly appreciated by our family.

For the state of Connecticut’s DEP, from creating Camp Harkness (campground specifically for families with disabilities). Given my children’s interest-turned-obsession with tent camping, it was wonderful to discover Camp Harkness. Even with my aging eyesight, I can keep an eye on the kids, regardless of where they are in the beach-playscape-tent site triangle. It’s especially nice that when they leave the beach to go on the playscape, I can remain there to enjoy a good book. It’s also nice that when Ethan wants to swim at 7 a.m., I can easily accompany him to the shore with coffee in hand.

And, lastly, for all the special needs bloggers, websites, Facebook pages, mailing lists and online communities, which often print the same conversations I’m having with myself in my head. For once again proving I’m not alone, my kids are supported and that there is a great big world out there for us.

And that world  is wonderful.

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To the Lady at the Grocery Store Who Let My Son Tap Her Shoulder

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“Good Ways to Get People’s Attention” is one of the social stories my son’s behavioral therapist has used to improve his social skills. Because words don’t come easily to Alex, he may resort to inappropriate behaviors, such as suddenly grabbing someone’s arm to get that person’s attention. Instead, we needed to teach him socially appropriate ways to interact, especially since his tall six-foot stature could make him appear threatening to those who don’t know him. Not only does he read the story aloud repeatedly, but he also practices the skills detailed in the story so he knows how to act around other people. Specifically, the social story tells him that he can wave, raise his hand, shake hands, give a high five, or say, “Hi” or “Excuse me.” After repeating this exercise many times, Alex has made great progress; we’ve seen him do what he’s been taught, tapping my shoulder when we’re in the car, raising his hand during a meeting with his team of support staff and offering a high five to his therapists when they come to see him.

Recently, as we were shopping at the grocery store for Thanksgiving dinner items, Alex put these skills to good use and was rewarded for his efforts. After collecting our list of groceries, we headed for the self-check-out line and were greeted warmly by the store clerk who was supervising the registers. Apparently, Alex was impressed with her friendliness because he suddenly left our cart of groceries that he’d pushed through the store, walked over to her, smiled and tapped her gently on the shoulder, just as he had been taught in the social story he knows by heart. However, he didn’t know what to say to her once he had her attention, so he just smiled.

Even though he’d done nothing wrong, my husband, Ed, and I immediately sprang into action, not knowing how she might react to his gesture and not wanting him to bother her. Ed apologized and led Alex back to the grocery cart, and I noticed the clerk following them. I asked Alex, “Did you want to shake her hand?” He lifted his left hand (as he always does, offering the wrong hand for a handshake), but she took his right hand in hers, gave him a nice handshake, which made him smile and seemed to please her.

Then Ed, still trying to smooth over a situation that could have been awkward, told Alex the next time, he could just say hello instead. The kind woman then put her arm around Alex’s shoulder and said sweetly to him, as though they were old friends, “That’s OK, anytime you see me, you can tap my arm. You’re so precious.” What could have been an uncomfortable incident became a pleasant one because she reacted so kindly, understanding that Alex intended no harm; he just wanted to interact with her. 

Before we left, I thanked her for being so kind to Alex, but she assured us that it was her pleasure, wished us a Happy Thanksgiving and made a special point to say goodbye to Alex, who was still smiling. As we took the groceries to the car, I felt teary that a stranger could be so kind to my son and make him so happy. Although I suspect she recognized Alex has autism, she responded with warmth and kindness instead of discomfort and avoidance. I hope she was as blessed by this brief encounter as we were.

As we celebrate Thanksgiving this week, I’m thankful for the many blessings in our life: our faith, family and friends that sustain and bless us, the healing we’ve seen in Alex, and for the kindness of strangers who take the time to interact with Alex.

To the pretty lady at the grocery store with the warm smile and kind heart, thank you for making Alex’s day. You should know that Alex has an innate sense for people who are especially nice; he’s drawn to them. You must be one of those people because he felt the need to reach out to you and get your attention. By responding to him with genuine affection, you’ve gained a new friend. That night after you called him “Precious” and told him he could tap you on the shoulder whenever he saw you, he asked what your name was. Overwhelmed by my fear of your reaction to him as well as by your sweetness to him, I didn’t think to ask your name. However, we hope to see you again, and you should know that a young man with autism now includes you in his prayers as his “new friend” whom he wants God to bless. Indeed, I pray that you will be blessed for the kindness you have shown. While you dismissed it as “no problem,” to us it meant so much, and we are thankful.

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This post originally appeared on One Mom’s Autism Notes.

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