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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I Am THAT Kid's Mother

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This morning I delivered a video to an elementary principal who wants to learn more about autism. While I was at the school, a paraeducator asked if I’d read the essay about “THAT kid.” It’s been floating around the internet. She said I might appreciate it.

Click here to read the essay “Dear Parent: About THAT Kid…” 

The essay, written by teacher Amy Murray, describes kids with different needs and the role of the teacher to protect the privacy of those children and their families. THAT kid’s behaviors cause other parents and kids to question why THAT kid gets special attention, why THAT kid is aggressive, why THAT kid comes to school late or why THAT kid has certain accommodations, sometimes to the detriment of others in the classroom. My twin sons with autism have both been THAT kid at different times and places in their young lives.

“Yes, I’ve read it,” I said. “I know THAT kid. I know many THAT kids.”

“So do we,” the principal said softly, as she nodded. She has a calm, gentle demeanor. Her kind eyes and smile seemed to say, “I have a soft spot in my heart for THAT kid. It’s a challenge, but we do our best every day to teach and support THAT kid.”

I am THAT kid’s mom. I’m grateful for any teacher who’s worked passionately on behalf of my kids and advocated for their needs. I am the squeaky wheel behind the scenes. I am the one who has gotten dirty looks from other parents. I am the one who explains my sons’ odd behaviors.

Two boys, one wearing a button-down shirt with a tie, the other wearing a hoodie with the hood on his head

My twin boys are in eighth grade, each on different paths and in different places. Isaac attends a school solely for kids with disabilities, which has been a good place for him to grow and flourish. His class size is small, and he gets a lot of individual attention. I’m grateful he loves school because his kindergarten experience in a different school was difficult for everyone. He was THAT kid.

Noah had the assistance of a 1:1 paraeducator from kindergarten until sixth grade. He was THAT kid who made tremendous gains with the help of his teachers, his paraeducator, his principal, his school counselor, his speech-language pathologist and everyone who embraced him. His behavior was never an issue, but his needs took considerable teacher time away from other learners. He was THAT kid who was academically bright, but he struggled with speech and fine motor delays.

I’m grateful for the teachers and other school staff who have worked with THAT kid. I appreciate anyone who has shown our family support and compassion. It’s not easy being THAT kid. It’s not easy working with THAT kid. I applaud you.

I’m grateful for the early childhood special education preschool teacher who stopped by our house with Dream Snow, a book Isaac loved because of the story and sound effects. She said he could keep it as long as he needed it. It was her only copy.

I’m grateful for the teacher who tapped me on the shoulder at Family Video and said, “Are you Isaac’s mom? I met Isaac when he was in special ed preschool. He was the reason I became a teacher.” I’d never met her before that day, and I’ve never seen her since. Her words deeply moved me.

I’m grateful for the teacher who told her class that everyone has a disability. She said her disability is that she has to work extra hard to become organized. Every student then shared their disability. Noah said, “My disability is that I have autism.” Another kid said, “Wow, that’s why you’re so smart!”

I’m grateful the preschool teacher only had good things to say about Isaac during an IEP meeting, even though she could have pointed out more of his weaknesses. Nobody had ever done that in such a kind way.

I’m grateful for the bus driver who spent 20 minutes each morning trying to get Isaac on the bus. She brought toys and music to assist him in the transition.

I’m grateful for the early childhood special education teacher who said, “Isaac is the most stubborn kid I have ever taught – and I’ve taught for more than 25 years.” She was a great teacher and a good advocate for Isaac’s needs. I was happy to hear her honest remarks. She validated my feelings. He was challenging!

I’m grateful for the kindergarten teacher who called me the first day of school and said, “I just wanted you to know Noah had a good day.”

I’m grateful for the speech-language pathologist who created a book for the twins when I was pregnant with Henry. The book told Isaac and Noah what to do with a new baby in the house. (The baby on the cover looked a lot like Henry when he was born. How did she do that?) I was never sure Isaac understood the book, although we read it every day. When the baby was born, Isaac insisted he take the book to school to show his classmates. I cried.

I’m grateful for the teacher who said she would take Isaac to Special Olympics overnight (for two nights!) if we gave her permission. We trusted her, so we agreed. It was a good experience for him and our family. Weeks later the teacher gave us a photo of Isaac jumping on the hotel bed. He was laughing and holding hands with the teacher who was in midair, too.

I’m grateful for the band teacher who sat down with me to discuss his personal experience with autism and to reassure me he would do everything he could to help my son succeed in band.

I’m grateful for the special education teacher who worked tirelessly with Noah on his handwriting.

I’m grateful for the secretary who talked with Noah every day in preschool as part of his conversation/communication goal.

I’m grateful for Isaac’s teacher who got a little teary-eyed when she said she didn’t think he would be in her classroom next year.

I’m grateful for Noah’s paraeducator who helped him develop his independence at school, while giving him just the right amount of autonomy.

I’m grateful for the preschool teacher who met me every day at my van and took my boys inside the school, one in each hand. They wouldn’t go with me, but they went with her. She made it look easy.

I’m grateful for the principal who pulled me aside after a vocal concert and said, “I got goose bumps when I listened to your son sing.”

I’m grateful for the teacher who said, “I don’t like to talk about Isaac in front of him because we all know he is listening and absorbing every word.”

I’m grateful for the teacher who let Isaac shoot hoops every day at the end of school because he followed directions and listened to the teacher. That reward motivated him.

I’m grateful for the teacher who said she loves talking to Noah every morning when he stops by her room. She said sometimes she has to think of interesting stories to share because she wants him to return every day.

I’m grateful for the teacher who emailed me to say she overheard Noah telling another teacher, “Congratulations and happy birthday! You’re now officially older than dirt!”

I’m grateful for the teacher who told Noah, “As much as you want to be in my first grade class forever, I can’t bear to think of you as a 70-year-old man sitting in those little desks.”

I’m grateful for the teacher who told the school custodian that Isaac has autism, which was why he was obsessed with the elevator and wouldn’t respond to her questions.

I’m grateful for the teacher who videotaped Noah doing a weather report at a time when his dream was to grow up and become a meteorologist. She made a little boy’s dream come true.

I’m grateful for the paraeducator who emailed me to say, “I always knew Isaac had wonderful parents because of his perfectly packed lunches.”

I’m grateful for the teachers who have created theatre and music opportunities for kids on the autism spectrum.

I’m grateful for the teacher who met our family at Noah’s band concert and sat in the bleachers with Isaac to help with his challenging behaviors.

I’m grateful for the teacher who provided free swimming instruction for kids on the spectrum as part of his research, and he asked my kids (all three!) to participate.

I’m grateful for the art teacher who said, “Your child is a joy to have in the classroom!” instead of “He has a fine motor delay and can’t draw worth a hoot.”

I’m grateful for the teacher who offered to take our family picture in her classroom two years in a row when I told her how difficult it was to get a good family picture. We used one of the pictures for a Christmas card.

I’m grateful for the principal who rode the bus home with Isaac while he has having a meltdown so he would arrive home safely.

I’m grateful for the custodian who let Isaac help load and start the dishwasher at preschool, just because he knew how much Isaac wanted to help. I’m grateful for the teacher who sent me a picture of Isaac doing just that.

I’m grateful for the teacher who gave me a “Sounds Like Fun” CD that Isaac enjoyed singing in the classroom. We listened to it so much in the van that once as I drove up to a drive-thru window I sang, “Kitten, kitten, k, k, k…” to the woman who took my money.

I’m grateful for the teacher who texted “Happy Mom Day” to me on Mother’s Day.

I’m grateful for the principal who was patient and calm with Isaac, even when he stole the potato chips she brought for lunch.

I’m grateful for the early intervention teacher who spent hours in our home every week when my boys were toddlers, helping them learn a work/play system.

I’m grateful for the teacher on the last day of sixth grade who said to Noah, “I was going to tell you good luck in junior high, but I won’t because you don’t need it. You’re an amazing young man.”

I’m grateful for the school counselor who went to a historical site during the summer and sent Noah a brochure in the mail because she knew how much he would appreciate it. (She even asked for permission before sending it.)

I’m grateful for the teacher who never complained that my son couldn’t tie his shoes.

I’m grateful for the early intervention teacher who came to our home, brought donuts and listened to me cry.

Thank you, thank you.

This post originally appeared on Turn Up the V.

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