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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The Beautiful Reason My Son Still Believes in Santa

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Dear Good Samaritan,

Let me start by introducing myself: My name is Courtney. My husband and I have an 8-year-old son with autism and then some. Our little boy struggles with more labels than a clearance item, I have many chronic illnesses, and my husband has more metal in his body than bones.

I know the church doesn’t tell you who we are; I know they don’t tell you our story, for confidential reasons. I’m reaching out to tell you our story, because I want you to know.

Christmas is my favorite holiday, full of magic and wonder, love and family, yet every year, I dread that countdown.

Paying our bills is a stretch, so of course, buying presents for our son is something that isn’t possible. I worry that he won’t get a visit from Santa. I worry about how we’ll put presents under the tree.

My son doesn’t worry; he believes in the magic of Christmas. Every year during the week before Thanksgiving, he starts in about the tree. You see, part of being autistic is a mind that fixates on something and then hyper-focuses on it, so it’s around this time the Christmas fascination begins in full swing. (He starts his wish list before Halloween, though.)

We, of course, have a fake tree because we can’t afford to buy a real one, but it’s a little tree, and we love it for its memories. So with tradition, the day before Turkey Day, my son and I get out the tree and assemble it.

He then helps me string the lights, and we plug it in. Making him wait until the next morning to decorate is a chore, but he’s getting better at knowing why we wait.

On Thanksgiving morning as we watch the Macy’s Thanksgiving Day Parade, we as a family decorate our tree. My son is all a-chatter about Santa coming soon, ooing and ahhing over his special and most prized ornaments. He’s in his glory.

We, too, are happy, but we’re still wondering, still praying, that our family has been “adopted” by a good soul such as yourself.

Of course, our son doesn’t know this. As the days turn into weeks and we run our errands, each time we see a red-kettle bell ringer my son gets all excited. He gathers all the change in the car, and crams it into his pockets.

He drops them a lot because his motor skills are off, and he gets upset with himself. Nevertheless, we gather everything up, and he proudly deposits his change into the kettle.

His face glows with pride, and so do ours — we may not have a lot, but as the saying goes, together we have it all.

We can’t afford a lot, but we know and have taught our son about the good the Salvation Army does for others, and he never forgets.

Then we get a call from the church that our prayers have been answered. A kind soul, an anonymous good Samaritan, has chosen our family to help with Christmas.

What a true blessing. Each year when my husband picks up the boxes, there are presents for the entire family. Stockings stuffed to the gills with goodies and small toys. (Perfect for little ones with sensory and motor skills needs.)

And each year, we cry in secret, in sadness, because we can’t make Christmas magical, but also in relief that someone else, someone who doesn’t even know us, cares enough to make it happen.

I thank you: for the relief, for caring, for making our holiday so special, for answering my son’s wishes.

I can’t yet tell my son about you. He’s 8, and he still believes. You know how I know? I know because he said to me the other day, “Momma! I know that Santa Claus is real! You know how I know?”

I replied, “No, buddy, how do you know?” and he looked at me with his chubby little cheeks and his adorable little grin and replied, “I know ’cause we are poor, but I still get presents. So that means that Santa has to be real!”

I smiled and walked away. I had to “go to the bathroom.” I closed the door, turned on the faucet to drown out my noise, and I cried.

I cried because my son knows we’re poor. I cried because he still believes in the magic of Santa. I cried because of you. Because of your love and kindness for our family.

I’m not telling you our story for sympathy. I’m not sharing this for attention. I am reaching out because from one human to another, I want you to know, just how much what you do means to us.

I want you to know that we are thankful. We feel blessed by your kindness. You are keeping the spirit of Santa alive for a little boy who truly deserves the world.

Thank you, from the bottom of our hearts,

A Family in Need

xmas 2013

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