jack-o-lantern with text 'because halloween and autism can be scary'

Because Halloween and Autism Can Be Scary


Oh my goodness, Halloween is almost here.

And like every year, I’m anticipating it with a certain amount of excitement and a certain amount of anxiety. If you don’t have a child on the spectrum or with sensory processing issues, you may think my anxiety is about homemade costumes or sweet decorations.

If you do have a child like mine, you know exactly why.

Since my son was 3 years old, Halloween has been a difficult, at best, to an all out nightmare of a holiday for him (and therefore, us). It started with the Buzz Lightyear Costume in a size 3T and culminated in a meltdown over the mention of trick or treating last year.

It took me a long time to accept that this holiday needed to be a bit different for us (I can be very, very stubborn when it comes to family events. No one knows that better than my my poor son). For years I pressured and pushed and bought three different costumes and pleaded and cried and got angry and grew more and more afraid. Then, we got the diagnosis — particularly the part about sensory processing disorder and rigid thinking.

All of a sudden, I understood. I got it. It made sense.

Why is Halloween so difficult for my child?

Costumes

My son doesn’t wear regular clothes well. He freaks out about tags, socks, the wrong kind of fleece, pants of any kind and just about any long sleeve shirt – because they are physically painful for him. Can you imagine how this costume felt?

young boy in a halloween costume

Every single year, he would try. Sweet boy. He wanted to celebrate with us. He wanted to get candy. He wanted to do what all the other kids were doing.

And then the costume.

Sometimes he would cry and complain. Most of the time, he would not know how to deal with the overload and start to get angry and meltdown.

Every year – except one.

boy in green alien halloween costume

This year, his morph suit was made of lycra (Hallelujah). He loved this thing. He would’ve worn it all day long, every day. A year later, in an occupational therapy gym, we discovered that lycra has a very soothing effect on some sensory overloaded systems… and my son has one of them. He sleeps in lycra sheets now. He has huge swaths of lycra that he asks us to bind him up in, really tight; Lycra is our friend around here.

It was our most memorable Halloween yet.

Lighting/Noise

Halloween carnivals and trick-or-treating are just loud. I remember my little guy at 4, going up to a porch where other children were also waiting. As soon as all the kids yelled, “Trick or treat!“ he tensed up and covered his ears. We lasted about three houses, and then Halloween was over.

We used to try and meet up with other families, thinking it would be more fun for him to be with friends — except that more friends equals more noise and exactly the opposite of what he needed.

In addition, since my son is older now and better able to articulate what is bothering him, we have learned that the lighting has been uncomfortable for him all along. Apparently, the glow of the street lamps, the porch lights, the glow necklaces,and the jack-o-lanterns made for an extremely uncomfortable night for my son. His eyes have trouble processing light in darkness. He prefers bright light or no light. Anything in between is “annoying” according to him.

Social Cues

When do we ever ask our young children to walk up to a stranger’s house, ring the doorbell, take candy from them and interact socially (You are so cute. I love your costume. Oh what a scary little man you are!)?

For my rigid-thinking, rule-bound son, making the exception to our safety rules for one night a year was difficult. Couple that with having to actually interact with strangers — something he finds difficult in everyday circumstances where the lighting is comfortable and he is not expected to wear a scratchy polyester blend, head-to-toe outfit plus mask?

It is so clear to me now why Halloween was so awful for him.

The truth is, I wanted Halloween for me. I wanted to be the mom with the cute kids, happy and excited and racing to the next house for candy. I wanted the idea of Halloween. And I felt so sorry for myself that everyone else seemed to have children who loved it, while I was stuck at home managing a meltdown.

Looking back, I regret that being my focus. I regret turning something that was supposed to be fun into something that was painful and scary for my guy.

For the past two years, we have allowed him to participate as much or as little as he wants. This has meant no real costume and not really leaving the house. (Last year, he really, really wanted to go. He tried — twice –and then melted down. We ended up making homemade macaroni and cheese while my husband took his brother to treat-or-treat. My son was sad, but then his brother returned and shared all his candy, so all was well.)

He announced this year that he is “too old to dress up anyway,” and he wants to be the one handing out the candy as kids come to the door. I have no idea how it is going to go, with the doorbell ringing over and over and the loud children on our doorstep, but I am thrilled he is still willing to participate.

If you are momma headed out this week to Halloween celebrations with your little one, I wish you fun pictures and sweet moments filled with love and lots of candy.

And if it doesn’t go well?

I would encourage you to find what works. It might be a different tradition entirely, like making homemade caramel apples together or wrapping each other up in toilet paper and playing mummy.

Figure out what works for your little one and enjoy it.

Because one day, when they are “too old to dress up anyway,”  you will treasure your own little ritual. And you will miss it.

Happy Halloween, Momma. You got this.

jack-o-lantern with text 'because halloween and autism can be scary'

This post originally appeared on Not The Former Things.

Read more from Shawna Wingert on The Mighty:
A Letter to Jet Blue From the Mom of a Child With Autism
What I’ve Finally Realized About My Son’s Meltdowns

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The One Thing I Need My Child With Autism to Know


You will know today is your birthday because we will tell you “Happy Birthday!” You don’t know how to respond except to echo “Happy Birthday!” and you don’t know what birthdays mean, other than you get to sing a catchy tune with those words in it. All day yesterday, when I would tell you, “It’s your birthday tomorrow!” you responded by singing “Happy Birrrrthday, dear Carson!” because Carson is in your class and you went to his birthday party in September. You don’t know that we will have to train you to answer “How old are you?” with “6.”

You don’t know that I’m having a hard time believing you’re 6 — that I’m quickly realizing this is getting harder as you get older. You don’t know that one of my least favorite questions from strangers is, “How old is he?” because I could always tell they were baffled when I said “5” and now they will be even more perplexed when I say “6.”

You don’t know how to have a real conversation or tell me how your day was. You don’t know that when people say, “Oh, well my kids don’t tell me anything about their day either!” I want to remind them that their kid could if they needed to — that their kid can still tell them who they sat next to at lunch or what they did at recess or which kid farted in class (a regular conversation with your brother) or if someone was mean to them.

You don’t know that you’re the most fascinating person I have ever met.

You don’t know how to answer simple, everyday questions unless you’re properly trained how to answer them.

You don’t know that a lot of the things you do are considered “weird” by society’s standards. I have heard kids call you weird. You don’t know that it used to bother me, but it doesn’t anymore. I find your weirdness endearing. I happen to think society’s standards are a bit boring, and we need more people like you to balance it out.

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You don’t know that I wish, every day, that I could crawl into your brain to see what’s going on in there.

You don’t know that I feel pangs of guilty jealousy of other parents — parents who have kids developing “normally” by society’s standards, kids way ahead of the curve, kids who blow “average” out of the water, kids I’m around every single day who are a constant reminder of what you’re not doing yet.

You don’t know that I’m jealous of you. I’m jealous of the way you think, hear, see and feel.

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You don’t know the number of unexpected milestones you have reached over the last few years. You don’t know how many times I did a silent little happy jig about every tiny-to-everyone-else but huge-to-me accomplishment you achieved. (You also didn’t know that I do know how to jig and quite well.)

You don’t know how hard you had to work to learn simple tasks, like pointing and saying, “Hi,” how hard you had to work to learn how to answer simple questions like, “What’s your name?” and “Where do you live?”  Other kids may know more, but you definitely work your ass off.

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You don’t know that just because we don’t follow the exact routine we did yesterday (and the day before that and the day before that) it doesn’t mean your world is going to collapse.

You don’t know that we celebrate every new word, every new skill. You don’t know that when you blurted out “What the F*CK?” in preschool, in the correct context, we didn’t get mad. We said, “Cool! Unprompted language!” And you definitely don’t know that I cried when you first went pee on the toilet. (Most people don’t know that, because it’s kind of embarrassing. What better place to admit it than on the Interwebs?)  You don’t know, but some people do, that my husband saved your first poop-in-the-toilet for me to see because he knew I wouldn’t believe it unless I saw it. You don’t know it was so huge we thought about naming it and sending out announcements in the mail. (You also don’t know that many parents reading this will completely understand what I’m saying, and instead of being horrified or shocked, will just be like, “Oh. Yeah. We did that too.”)

You don’t know how to lie and you don’t know how to hide your feelings. That makes you the most authentic person I know.

You don’t know that this world is difficult to navigate, even for us “normals.” Sometimes I try to imagine navigating it as someone who sees it differently and without the words I want to say. People say things to me like, “I don’t know how you do it,” referring to this whole autism parenting thing. Well, they don’t know that I don’t know how you do it.

You don’t know the obstacles ahead of you. I have no doubt you will hurdle them, maybe not with ease and maybe not without heartache or pain, but you will hurdle them. You will move onto the next one, as if to say, “OK, what’s next?”

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You don’t know what “mean” means yet. You will, I’m sure of it. Kids will be mean to you. It’s possible they already are, but you wouldn’t necessarily pick up on it. You don’t know that it’s because they don’t understand you.  You don’t know that they’re missing out by not trying.

You don’t know when you’re not being included. You like playing with others but also seem completely content to be alone.

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You don’t know that, as you get older, your innocence and your vulnerability will become more enticing to the groups of kids whose self-esteem don’t measure up or whose parents never taught them the meaning of kindness and acceptance and that different is good.

You don’t know that if I ever find out anyone has hurt you or taken advantage of your vulnerability, I will go Mama Bear on their ass, and I might not be classy about it.

You don’t know that I’m crippled by fear about your future. You don’t know that I wish I could keep you in a protective bubble — a cruelty-resistant bubble that only lets the good in.

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You don’t know that when you cry, I want to cry, almost every time. Because, good God, it must be frustrating to not be able to communicate with the people around you.

You don’t know that I hope, with every ounce of my being, that there will always be one kid who stands up for you. One true friend. One kid who has your back. You don’t know that I found out at parent/teacher conferences last night that you have attached yourself to a sweet little girl and you hold her hand and you link your arm with hers and she is your helper and Oh my God, I almost starting bawling right there in front of your teachers. You don’t know that I wanted to ask, right then and there, if they could keep her with you all the way through school.

You don’t know what a cool brother you have. You don’t know that he will definitely always have your back.

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You don’t know how much your brother worried about you before you started Kindergarten this year — that he worried you wouldn’t stay quiet during lockdown drills. He worried you wouldn’t like lunch time very much. He worried you would get lost on the way to your classroom. He worried to the point of tears when we drove by the school one day over the summer.

You don’t know that I held back tears when your teacher told me your brother walks you to your classroom every morning.

You don’t know that I wonder if you will end up alone or with a companion. I wonder if you will find someone who loves you for you, who understands you and doesn’t look at your quirks as quirks necessarily but as really cool things they’ve never seen anyone else do before. They will see you as someone they want to be around always. You don’t know that I wonder if you’ll experience the joy of being a parent. If you’ll be able to pass on your kindness, your sense of humor, your ability to see, hear, feel,and think to another human being who is half you. You don’t know that I hope this happens for you, because I want more of you to be part of the world.

You don’t know that I’m so glad I get to be your mom — that sometimes I think, “Holy sh*t, this kid is cool. How did I get this lucky?”

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You don’t know that I’m tremendously proud of you. I want to brag about you quite often, but that type of bragging is uncommon in this world that’s different than yours. “My kid recites his class list at bed time!” is a different type of brag than, “My kid started to read!”  You don’t know how amazing you are, and how incredibly cool I think your brain is.

You don’t know you have autism.

You don’t know that some people are scared of autism.

You don’t know that I was scared of it four years ago when the pediatrician put her hand on my shoulder, said, “I think he has autism” and handed me a list of phone numbers. That I cried on the way home. That I Googled “autism” and then got more scared before remembering, “You moron, you’re not supposed to use Google for any sort of… um… anything.”

You don’t know that my biggest fear, aside from something happening to you or your brother, is dying.  Because no one knows you like I do.  There are people who love you and who will take care of you, but if I could just figure out a way to be immortal? Yeah. That would be greeaaaaat.

You don’t know that being your mom has quite literally changed me.

You don’t know that I wonder what it would be like if you were “normal.” And you don’t know how terribly I would miss you if you were.

You don’t know what a birthday really means. You don’t know how excited most kids are to announce to family and friends and complete strangers: “I’m 6 years old!”

There are so many things you don’t know that I wish you did.  Yet, so many things I’m thankful you don’t know.

I just want you to know you are loved.

This post originally appeared on Glass Half Full.

Football Player With Autism Makes Memorable Play Thanks to Teammates -- and Opponents


A little bit of teamwork goes a long way.

Andrew Martire, 8, has autism and plays on a pop warner football team in Lowell, Massachusetts, according to My Fox Boston. Recently, in his first game as a starter, Andrew got to be part of a pretty memorable play — he made a 65-yard-touchdown!

Both teams worked together to give Andrew this special moment and the crowd went wild cheering him on.

Check out the heartwarming play in the video below:

Boston News, Weather, Sports | FOX 25 | MyFoxBoston

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A Letter to Five Guys, From the Mom of a Teenager With Autism


If you live in our community and catch a sight of us in public, you will see a young man hopping through the store, a cool looking device sitting in the shopping cart and a woman telling “hoppy” to come along. Some people stare. Some people smile. Some people are pretending not to stare.

It’s OK, really. He’s happy and I’m happy and that’s all the matters. We generally go through the stores without conversation with anyone else and that’s just fine with me. We do tend to live in just the space between us, where I understand him and he understands me.

Except there is one place in the community where Kreed’s hopping, dimple grin and sounds are a welcome sight, and people greet him with cheers and shout his name and immediately start his order — often times before I even open the door. Reminds me a little of Kreed’s very own Cheers place.

five guys logo

 

Five Guys is Kreed’s favorite burger place on Earth. Literally. Ask Kreed where and what he wants to eat and it will be Five Guys every time. While their fries are delicious and burgers large and yummy, I know it has just as much to do with the people as the food. Kreed is accepted there without question. They aren’t staring at him but celebrating his uniqueness and love him for it. It’s a place where they actually talk to him and wait for him to respond on his device. They will give him all the time in the world to let him order even if it takes a few tries. They are careful to speak directly to Kreed and not look to me to translate. If Kreed gives them money, they give him back the change.

They are some of the most wonderful group of people, and they don’t even know it. It’s wonderful to have Kreed go somewhere and not be treated different, except maybe with more kindness and grace than he has ever experienced before.

Kreed is different and despite being an incredibly handsome (I’m not biased, I swear) young man of 17, it’s apparent he’s different within seconds from his hopping, to using his communication device. Most people expect me to answer for him or repeat their question to him and most just stare even if they try not to. On some level I know Kreed is aware of this by how he treats people. He knows when he is not cared about or treated as the same — so in turn, he will pretty much ignore you completely. In public we are in or own space, and he talks to me as if I am the only one that exists. When he walks into Five Guys, it’s like the greatest experience of his life.

For that, I will be forever grateful to Shane, Drew, Dolores, Joe (who tries to act like a tough guy instead of the teddy bear that he is), Max and Sara.

boy with five guys staff

They have enriched Kreed’s life more than they will ever realize. Thank you for respecting him and liking him and making sure each time he walks into Five Guys, that it’s an experience full of love for him.

People don’t often realize the impact they can make on someone’s life. For Kreed, they have made him into a Five Guys fan for life and we frequent the restaurant at least 4-5 times a week. They’ve helped him learn skills he had been unwilling to do before. And they’ve given him something he gets nowhere else — for this boy to feel such love from virtual strangers merely by being himself.

To those that love Kreed and live with him every day, that kind of impact is immeasurable. They have opened up his world in a social way that had not been possible before. He became interested in money so that he could go to Five Guys more, which in turn led to him learning to do chores around the house to earn such money.

He learned to use a huge part of his AAC device by going to Five Guys — he learned to ask for the food he wanted, to ask for “more water or fries or peanuts” when he ran out, and to tell me his feelings while he was there (happy and excited). I can’t begin to tell you the amount of language Kreed has learned because of the people at Five Guys.

We have visited numerous Five Guys over the years now, but none like the crew that is currently at the Dana Park location in Mesa, Arizona. I owe them a lifetime of gratitude for how kind they have been to Kreed. Kreed has also been going to the Flagstaff location as we transition to move there and many of the staff has gotten to know Kreed as well and are equally as kind.

But the staff at Dana Park truly love seeing Kreed and look forward to his visits. For Kreed to feel that kind of love from a place is amazing, and I will never ever forget the way they have touched Kreed’s life in this moment of time.

In a world where we hear about bullies and violence… there are still corners of this world where kindness rules. To the staff at the Dana Park Five Guys, you all have my love and respect and thanks for being such a bright light in Kreed’s World.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

When I Realized the Grocery Store Bagger Has Autism


A man about 25 years old works at our local supermarket. Let’s call him “Sam.”

Sam works as a bagger and general helper at the supermarket. He’s a large young man — would have made a good linebacker in high school. Sam is one of the hardest workers at the store. Some of us understand Sam, and some do not. Some stare and crunch up their faces with a questionable look. Sam has autism.

On any given day you will find Sam at the end of the checkout lane conversing with himself. He has a vast knowledge of sports teams, remembering the dates of games, the score and the upcoming schedules of each team. He has a habit of smacking his hands together with such force that the sound resonates through the supermarket. I often wondered if this was a coping skill taught to him to use when he gets nervous or if it was a replacement given to him for a more offensive behavior. Or maybe for him, it’s a sensory issue.

One day as he was bagging I said, “So, Sam, how are you doing today?” He immediately put down the item he was bagging and walked away. Oh my God, I thought to myself, you scared him and he had to walk away to avoid reacting negatively to it. Then the cashier told me, ” He won’t touch pickles… If you buy a jar of pickles he won’t bag it.”

I breathed an autism mom sigh of relief. I was having an I-should-have-known-better moment there for a bit.

Sam will talk with anyone. Usually you can hear him spotting folks he knows in the market. He’ll call from two aisles over, “Hello, Mrs. Brandy Miller. How are you today?” “Mrs. Brandy Miller, are you still working at the bank?” “Nice to see you, Mrs. Brandy Miller, OK, talk to you soon.” The problem is, as I noticed today, sometimes the person to whom the greeting is directed, fails to respond. I find this sad.

Today, as I entered the checkout line, Sam was in a different position from his usual end-of-the-checkout bagger spot. Sam was a customer. “Sam,” I called, “are you doing your own shopping today?” “Yes, I am, how are you today, thank you, I’m doing very well,” he replied. He had a decent size cart of groceries.

My curiosity aroused.

As he had his groceries rung up, he conversed with the girl running the register. “Ashley, do you work tomorrow? I work 10 to 2, Ashely. Do you work tomorrow, Ashley? Ashley, I’ll see you tomorrow when I work 10 to 2. Ashley, what hours do you work tomorrow?”

I wondered if he was actually shopping or doing a practice run. I perused the groceries he’d selected. Many juice boxes, a jug of lemonade, ice tea, a bottle of vitamin water, a link of some type of smoked sausage, two or three Lean Cuisine-type dinners. And two Sunday newspapers. He bagged it all himself in the reusable, keep-it-green type of plastic shopping bags the store sells. The total: $133.

“I’m going to pay for my order in a minute, Ashley. Ashley, I will pay for my order in a minute.” He fished his debit card from his wallet. “I’m gonna pay for my order, Ashley.” His gaze changed to the computer screen that shows the total as the register records it. “Ashley, how much was that newspaper? It should be $1.75. The Carlisle paper is $2.00 and the Harrisburg paper is $1.75.” The cashier was confused.

“There are two newspapers there,” I pointed out to her. Sam knew the prices of both and noticed that the register had only rung up the one on the bottom as the cashier slid them over the scanner, since one was on top of the other. “I’m gonna pay for my order now, Ashley.” He slid his debit card through the machine, entered his code and announced, “I’m gonna go put these in the car now, Ashley. I will see you when I work 10 to 2 tomorrow, I will see you. When you are working tomorrow, Ashley? Have a nice day, Ashley, OK, bye, bye.”

And he departed.

I wanted to grab the lady behind me in line and shake her, saying, “Did you see what Sam just did? He bought his own groceries and paid for them correctly. He has a job, he earns his own money, and he came in here unescorted and did his own shopping. Do you understand what a great accomplishment that is?”

But of course I could not. It would take me hours to explain to the average person not aware of autism, how much work, bravery and fortitude it took for this young man to get to this point in his life. My frozen foods would melt in the time it would take me to explain that a grocery store full of crying babies, loudspeaker announcements, crowded aisles and a sea of colors can be a nightmare for our family members on the spectrum. So, I smiled to myself for his achievement and paid for my own order.

As I exited the store, the idea crossed my mind that I would love to be able to speak with his parents. I would love to ask them how they managed to teach him all they had that got him to this level of independence. I scanned the parking lot hoping that perhaps he was still loading groceries into the car. I swore to myself I would approach them and congratulate them and Sam for his job well done. But alas, he was gone.

Every time I see Sam at work at the market, I’m reminded that I too have a son with autism. I wonder, can I teach him what he will need to know to at least reach this level of self sufficiency?

I suppose it will be one day at a time — one jar of pickles at a time.

This post originally appeared on Joey’s Ma.

Why I Hate Functioning Labels


I am an adult with autism, raising a son with autism.

And I hate functioning labels.

I do. I despise them. I don’t care for labels at all, but as an autism parent, I do understand how these labels get our kiddos the help they need.

But really… functioning labels are the worst. They’re designed to show where our children are on the spectrum, but they’re actually limiting our kids.

Here’s an example.

My son, Liam, has been diagnosed by four doctors as having autism — as well as bipolar disorder and many other things. (He has a full plate.) Two doctors said he’s high-functioning. The other two said he was moderate.

Why two different functioning labels? Let me tell you. Liam’s IQ is 120.  He tests gifted in math and vocabulary. But his reading comprehension is bad. He can read to me, but he can’t tell me what he just read. He’s considered “learning disabled” in that area. Even though he spoke early, his speech was so hard to decipher that it was considered a speech delay.

So it would seem that based on his IQ and some of his test scores, he’s high-functioning. But, based on his disabilities and behaviors, he’s moderate.

Liam has also learned to pass. For those of you not familiar with the term, “passing,” it’s when a person with autism is able to pass as “normal.” There are some days where Liam can play with his peers or be in a public setting, and no one would know he’s on the spectrum. But before long, passing becomes too much work, and a meltdown ensues. There are also days where he doesn’t even try to pass. It seems at 8 years old, he’s realized that, around the people who accept him most, there’s no need to pass.

So you see, Liam is literally all over that spectrum. He doesn’t fall into one convenient slot. And the more parents I’ve spoken to, the more I’ve learned that Liam isn’t alone. So why do doctors and therapists insist on using these functioning labels?

Autism isn’t a competition.

I don’t care where you or your child fall on the spectrum. My child doesn’t care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same.

So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was “high-functioning.” No. I don’t consider myself high-functioning. I’m simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

Basically, my autism is my autism. Liam’s autism is his autism. And your autism is your autism.

This post originally appeared on My Life With My AuSome Son.

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