If you ever feel a sense of panic when given verbal instructions, you’re not alone. Whenever I’m asked, “Will you please get whatever from the closet on the middle shelf to the right of whatever,” my immediate reaction is like a robot twirling around saying, “Panic alert!”

I started working as a substitute teacher’s aide two years ago. I often find myself frustrated when given verbal instructions by teachers or other aides, and I didn’t know why until I was recently diagnosed with Asperger’s syndrome (AS).

This diagnosis prompted me to wonder if my long-held habit of asking someone to repeat what has been said to me, particularly instructions, is related to my syndrome. Since my diagnosis, I have been doing research on AS and learned verbal instruction can be one of the things people with AS might find challenging. I don’t think it is so much of a lack of hearing that I ask for a repeat, but a need to be given more seconds to process what I am hearing.

An example of my trouble with verbal instruction was when I was subbing for a kindergarten class. While doing circle time, the teacher asked me to “get the phone.” I interpreted that to mean to go over to her landline phone at her desk and answer it. I was bewildered since I hadn’t heard the phone ring, but I thought, “Oh, well, my hearing isn’t what it used to be.” All I got was a dial tone.

I looked back at the teacher, who pointed at her cell phone. I took that to mean it was her cell phone that needed answering. Again, I was puzzled since it wasn’t ringing either. I should have acted on my bewilderment and asked for clarity, but I was in panic mode. I picked it up and heard nothing. 

That’s when the teacher told me her instruction of “getting the phone” was to simply go over to her cell phone, pick it up and hand it to her. Now if she had said, “Hand me the cell phone,” I would have understood what she wanted.

I was humiliated! I wondered what the teacher, 30 years shy of me, must have thought. She probably would have received her cell phone sooner if she had asked one of them to “get the phone” since the children are probably more familiar with cell phones than landline phones.

My diagnosis has explained so much of how I think, feel and act. Now when I think of that moment in the kinder class, I don’t feel so bad.

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My daughter Shea is on the autism spectrum. She is a sweet, charming, funny girl. Thanks to Steve Jobs, the iPad opened up her world several years ago like it has for so many of our kids. Because Shea doesn’t have strong leisure skills and is mostly nonverbal, she relies on her iPad 24/7. Over the past few years, she has gone through about 10 iPads by throwing them, dropping them in water, breaking them in some unknown mysterious way, etc. When one of the above happens, it’s a mad scramble to get her a new one and quick. Thankfully the $99 Apple Care generally takes care of the replacement (sorry, Apple).

Three days ago, my husband was picking up our daughter from school, which I usually do, but he’s a good pinch hitter. I discovered upon their return that she did not have her iPad. I asked him if he’d forgotten to get it from the school and he said, no, she was using it in the car and then she didn’t want to. As a veteran of these circumstances I immediately knew it meant her battery had run out, as she never “loses interest” in it. Then he said he forgot to put the child locks on the door and window and she’d kept trying to open both repeatedly, making for a dangerous situation under the best of circumstances. Oh no… this was trouble.

Long story short, it wasn’t anywhere to be found. She’d thrown it out of the car at some point along the 30-minute journey. Panic set in. We knew we were going to have to buy her a new one, however, neither of us could do it until Friday — four days away.

I woke up this morning to check my email and saw one from The Mighty. I assumed it was my regular newsletter, but I saw it was addressed to me personally. What it said shocked me.

Dear Terri,

I hope this email finds you well. I’m reaching out because we received an email from someone reaching out because they believe they found an iPad belonging to your family…

What? I couldn’t believe it, so with my permission, this editor was able to put us in touch. Questions were racing through my mind. How/where did he find it? How did he know it belonged to us? And how in the world did he find us through The Mighty?

I sent him an email, and he emailed me back with his work address and said I could pick it up anytime. I raced over and walked into a large high-tech office. I told the receptionist I was there to see the kind gentleman, and she said he was expecting me. I asked her if he told her why I was there, and she said no. I proceeded to tell her the story, and by the end we were all crying. He rounded the corner, and to my surprise he was a “kid” (to me at least because most of my kids are older than him). He had Shea’s iPad clutched in his hands and happily handed it to me. I gave him a big bear hug, and he returned with an equally firm squeeze. I’m not sure he understood why I was crying so I told him I hoped he realized this was not about getting her iPad back (although it was really great… really great), but it was about him and the lengths he must have gone to find me.

man with lost ipad

He said he was walking along the side of the road not far from his office and saw it lying in a gutter. Shea’s first and last name were written on the back with a Sharpie. It was very worn so you could barely read it. He Googled her name and came across an article I wrote for The Mighty a year or so ago, and tada!

girl with found ipad

Maybe it’s just this time of year that made this so special and me so weepy, but I was truly touched. I told him he restored my faith in humanity and the generosity of the human spirit. He probably thought, “This lady needs to get out more!” But his eyes were kind, and he said he was very happy my daughter was going to get it back. It meant a lot to all of us. Now, if that isn’t a feel-good holiday story, I don’t know what is.

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My autistic kiddo loves Christmas from her curly head down to her Coca-Cola red painted toes. (I painted her nails with instant-dry polish while she was watching “Frosty.”) The party started for 14-year-old Sadie in late October, when she first spotted the lighted plastic trees at Target. But Christmas Day can often be too much for her. It’s too much glitter and paper and sugar. Too many exclamations. Everyone watches Sadie’s every move, looking for a glimmer of a grin. Most of all, I think there are too many expectations on our parts about the day.

We try to keep things low-key. We set up a quiet area for Sadie at my parents’ house in the mountains, where we spend the holiday. We take walks in the woods. And we let Sadie wander about the house during the morning’s big event. She drops in to peer at the fuss around the tree, unwraps a present, and then goes off to the quiet area to regroup. We dole out her gifts slowly, giving her one daily into the New Year. Then we offer Sadie homemade cinnamon rolls, her favorite, and hope the day goes smoothly.

Though we do these things in an effort to keep Sadie calm, think about it: Who the heck is calm on Christmas? Between wondering how the WORLD’S BEST GRANDPA hoodie you’re giving your dad is going to fly, playing oven roulette with half a dozen 9 X 13 pans, and drinking an ungodly amount of hazelnut-spiced coffee, are we really relaxed? No matter how much I belly-breathe, my attempts at Zen aren’t fooling Sadie and her mood-detection radar.

So this year, I’m letting it go. I’m celebrating the moments as they come. Because I can’t manufacture this:

Sadie sitting under our tree, gazing up at it and inhaling its Fraser fir-ness. I’m in the middle of dusting, but I plop down next to her. I’m rewarded with two gleaming brown eyes and a smile that could melt snow.

I’m never sure which holiday foods Sadie will enjoy. I give her a gingerbread man, and she lights up. Bingo! She asks for another. “You can’t catch me!” she says, reciting the nursery story. I hand her another. There might have been six, in total. (They’re small.)

Sadie and I go for a walk down our street, and she wants to sing carols. One neighbor is setting up lawn reindeer; another is sitting in his front yard on a bench. They give us strange looks. Ah, well. Our offbeat rendition of “Joy to the World” won’t kill ‘em.

The 25th might bring challenges, and that’s OK. This is more than acceptance. This is taking a cue from Sadie, who knows Christmas can’t be confined to one day.

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Dear Autism,

Because of you, there is no such thing as a quiet, flickering light for me.

There is no such thing as a moment with complete comfort, unless my mind is shut down.

Because of you, there is no such thing as complete confidence for me. Anxiety debilitates me.

Because of you, there is no such thing as a dull moment for me.

There is no such thing as a moment where I can feel content with where my body is.

Because of you, there are painful moments people cannot see. Even in the smallest things others might not notice. The smallest things (a slight change in routine/ritual, a certain sensory sensation) keep banging at my head like a hammer beating through my skull.

Because of you, there is no such thing as clear communication for me. The closest people I know think I’m being childish, I hate them, and/or this is happening for “no reason” as I am ignoring, screaming, crying, injuring myself and attacking them.

I am not angry at them, I promise. I am just angry at myself. I’m angry at feeling like I have to lash out or shut down for the words that find their way into my brain and hide. They hide, they bother me, and my chest and body is on fire for those words I cannot speak.

Because of you, there is never a moment when I’m not lost. I feel trapped so deeply inside myself, I cannot show one who I really am or how I really feel. My own mother for 19 years still tries to this day to find and understand me.

Because of you, there was never a dull moment in every milestone I reached. But no matter how small it was, it was always cherished because it meant I struggled more than most other kids to get there. And that was because of you.

Because of you, there is no such thing as a dull moment when I’m hidden in your repetition.

The times I pace the floor for hours to listen to the same songs….

The times I am on my toes, feeling as if the weight is lifted off my shoulders as I smile at the ceiling or the sky…

The times I rock back and forth to a sound or song as I am sitting…

I’m with you in my own personal world I created with you. And I like it. I understand this world, and things go my way in it. And most importantly, I can be freely autistic.

If it weren’t for you, I wouldn’t find joy in the little things in the world the way I do…

When I look at the sky and see four groups of birds flying to their own little rhythm as if they were swinging around like the performers in a circus show.

When I look down and see the beauty of ice crystals individually clinging to the top of each strand of grass, glistening in the sunlight on a cold day. It’s amazing, it’s wonderful.

If it weren’t for you, I wouldn’t find my place and my passion as I have.

Who knew I could spend hours at a time reading on one scientific study after another?

If it weren’t for you, I would be exactly where I am today, but I wouldn’t understand how to appreciate it.

And most importantly…

If it weren’t for you, I wouldn’t be the Lexy Locker everyone I know closely loves dearly.

The person who’s lived with you her whole life

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Image via Thinkstock Images

I’m making a list and I’m checking it twice… and thrice… and whatever words means a fourth time and a fifth time. After one final go over, I pull up the calculator app on my phone, tally up the cost of each item on the list, and I know the word that comes flying out of my mouth confirmed my spot on the naughty list. Again.

As I grab my keys and coat and decide I have to go to Target for the 45th time this holiday season, I’m stopped by the Ghost of Christmas Past. Snatching my Red Card from my hand, this ghost of years gone by not too gently screams in my ear, “Remember last year? And the year before that? And the year before that?” I put on my best innocent face and tell the ghost I have no idea what he is talking about, snatching my Red Card back because I have to go shopping for my son, Ryan.

The lists between my three kids just don’t add up. Again. They never have. And in years past, I thought it mattered. I mean, really mattered. Sitting in the Target parking lot, with the Ghost of Christmas Past’s voice still ringing in my ears, I frantically search the internet on my phone for some last-minute Christmas ideas for Ryan. As I type in every word having to do with Pokemon in Google’s search bar, it hits me that I do remember last year, and the year before that and the year before that, so, I put my car in reverse and head back home.

I love my kids equally, yet, differently, because they are each unique individuals whose love for me and from me is as unique as they are. However, at Christmas time, I feel like everyone must be treated equally by the number of presents received and the amount of money spent on each one. And unfortunately, it always seems like Ryan is on the short list.

Here’s the thing, though, Ryan has never wanted much “stuff.” Oh, sure, he has a few items on his Christmas list…all video game-related, but, after only two or three games, his list is complete, unlike his siblings whose lists go on and on and on. His list on paper (or in this case, in Notes on his iPhone) is different, but it’s not less.

Even when Ryan was younger, he never played much with toys, not in the way you might expect a child to play with toys. What he played with and how he played was different. Yet, as the Ghost of Christmas Past reminded me, that didn’t stop me from spending hundreds of dollars on stuff Ryan didn’t care about or want. Toys, video games and clothes often ended up at our neighborhood yard sale unopened and in “brand new” condition. I could have had my own eBay store from all the stuff I so desperately thought Ryan “had to have.”

In many ways, Ryan is incredibly practical. He may be aware of what other kids have on their Christmas lists, but he doesn’t care enough to join the masses. “Why would I want a bunch of crap I don’t even know anything about?” he asks me. Ummm…I guess because it makes “Santa” feel better? And that’s what the not-so-subtle Ghost of Christmas Past was trying to tell me. For many Christmas pasts, “Santa” made it all about my needs and wants, not Ryan’s.

As with so many moments on this autism journey, I had to step back and ask myself, is this about Ryan or is this about me? More times than I care to count, it has been about me. Even at Christmas. (Insert holiday guilt here).

I think early on, I wanted Ryan to be like all the kids on the toy commercials, in the neighborhood and in his school, that somehow I thought he should get all this “stuff.” But Ryan was Ryan, and every toy on the Hot Toy List wasn’t going to change him.

Thank God.

Ryan is unique. He is different in so many beautiful ways, so why shouldn’t his Christmas list be as unique as he is? Even though his list is much shorter than his brother and sister’s lists, I think Ryan will be thrilled with what he finds under the tree on Christmas morning, so why should I fill one more Target cart with stuff to make me feel better?

This Christmas morning as my daughter Emma opens up her 12th pack of Shopkins, and my son Kyle sports his latest Green Bay Packers Jersey, I believe Ryan will be happily playing Pokemon Sun on his three-year-old Nintendo 3DS waiting for Charmander to evolve into its next form. And I don’t think he will believe his brother or sister are loved more than he is because they have an extra gift or two. My hope is Ryan knows he is loved beyond measure, and that no Christmas list can ever begin to tally up our love for him.

​And as I sit back in a room littered with wrapping paper and cardboard remnants, I will remind myself not to count the number of presents for each kid under the tree, but, to add up all the wonderful gifts I have been given in raising three uniquely beautiful children as the Ghost of Christmas Past slips out of the room and whispers, “See you next year.”

Follow this journey on The AWEnesty Of Autism.

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