child holding pumpkin with spider on fall leaves, halloween

I Saw My Son With Autism Not Dressed Up for Halloween. His Teachers Saw Something Else.

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I am one of those people who truly loves Halloween — not the spooky, scary side of the celebration, but costumes… oh yes I love costumes. Give me a reason to dress up, whether it’s halloween or a theme party, and I am 100% committed. When I was a child, I bugged my parents for months leading up to the big day of October 31 by evaluating every possible costume I could potentially dress in that year. By the time the actual date rolled around most of my family was exhausted by my obsession with perfecting just the right attire for the big night.

Like so many parents, I looked forward to sharing these experiences with my own children. When I had my first son, I was elated to be able to dress him up in costume; he was an adorable 4-week-old pirate, a 1-year-old lobster and a 2-year-old Cookie Monster (even if he wouldn’t keep the head on). It wasn’t always easy figuring out how to maneuver a baby into these ridiculous ensembles, but the pictures are treasured, and my love of halloween, costumes, and trick-or-treating remained.   Then my son turned 3, and it all came to a screeching halt. 

While we had been engaged with early intervention and various therapies since my son was 18 months old, it was right around his 3rd birthday that we received the official diagnosis. Our son is on the autism spectrum. Nothing had changed yet, everything had changed. Many of the simple day-to-day ritual or family outings that most people take for granted were already not part of our norm for a variety of reasons, including our child’s sensory issues, meltdowns or challenges in large groups of people. Yet somehow the notion that Halloween would no longer be a cause for fun and celebration was simply not something I had considered.

That Halloween when my son was 3 we just barely got him into a t-shirt that resembled a pirate costume. He had the hat, eye patch and sword in the wagon next to him, but it was enough to feel as though we were a part of the day. Then last year, when he was 4, it became apparent that my grand plans for family-themed costumes and our first opportunity to attend a halloween parade at his pre-school were simply not going to go as planned, or at least not according to my expectations. The parade included every grade of the elementary school from pre-k through third, and it was wonderful. The kids looked great, the parents were out in full force, cameras were flashing at every turn, and the school did a wonderful job. When my son’s class came out I waited with anticipation. I had not been able to convince my son to wear his costume to school but sent a note to his teacher that morning explaining it was in his backpack and that I thought there was a good chance seeing the other kids in his class dressed up would make him want to participate.

As his class entered the parade every single child was in costume… except my son. He was wearing an black Adidas running outfit that was to be the underneath of his costume. I could feel or at least imagined I felt other parents wondering who the poor kid was whose mom forgot about the parade and costume. I could barely choke back tears as I realized yet again how different our experience was compared to other people’s, but I proudly stood by clapping and waving and taking pictures of my little guy.

Needless to say the actual night that followed also did not go according to plan; my themed family costumes of Ghostbusters with our younger son dressed as the Stay Puff Marshmallow Man did not appeal to my older son. We tried again and again to no avail, and by the end of it he was so out of sorts (and so were we) that we never even made it out to trick-or-treat. This was not my finest moment as a parent. I had focused so much time and energy on creating a Halloween experience that would meet every Pinterest expectation that I forgot to focus on what was really going on in the mind and world of my child. He doesn’t like costumes, he doesn’t like to pretend he is anyone other than who he is, he loves imaginary play, but we can’t call him Captain Charlie or Superman because then everything goes downhill. I may not get it, but I can and have certainly learned to accept it.

The following Monday I received several pictures of the school parade via our parent email with countless notes from his teachers, aides and therapists all telling me that due to his sporty retro-sweatsuit combined with his good looks they all decided he was dressed as Ben Affleck from “Good Will Hunting.” I laughed and cried with these notes because it humbled me and made me realize that how we choose to look at a situation and how we choose to celebrate regardless of what is the “expected norm” matters more than what we think should happen.

His teacher told me she was so proud of how my son had walked in the parade, how he stayed with his class and held hands with his two friends the entire time. He didn’t freak out at the number of family members crowding the area or cheering and yelling. He simply stayed with his group and smiled the whole time, and he had fun doing it.  

So here we are in October yet again. Normally I would have started thinking about costumes at least a month ago, but this year I have decided to step back and see what happens. My son told me he wants to be an astronaut, and I think that is great. We will go pick out a costume together, he may or may not wear it and we may or may not make it out to trick-or-treat. If we make it out that night and he is not in costume, I will not worry about what people think or if anyone is annoyed at giving candy to a child who is not dressed up or may not make eye contact. None of it really matters to me any more. The realization that we are creating our own family memories and traditions that may look nothing like what we thought they would but are uniquely special in their own right is all I need.

Image via Thinkstock.

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How a Kindergarten Project Taught Me to Trust My Son With Autism

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Sending a vulnerable child off to his or her first foray into the larger world without the shelter (OK, constant hovering) of a loving parent nearby can be emotional for any family. I feel especially vulnerable sending a child diagnosed with autism spectrum disorder (ASD) into a new environment where he, and I, will be tested in ways that we have not yet imagined.

I will admit to possessing a lot of baggage on this topic. We lack proximity to an extended family support network, so prior to the start of kindergarten, I could count on my fingers how many times my oldest son had not eaten lunch with me, much less spent the night without me. For the few times a week he had morning preschool, I barely had time to complete the grocery shopping before picking him up again. I was his interpreter, his defense, and, maybe, we were one another’s means of hiding, too. Our normal was never called into question. This was our routine — our small life.

Despite my insecurity about sending him off, pragmatically, my spouse and I made lists of pros and cons. We toured and studied private, charter and public local schools. I brought up homeschooling as an option. School research was our actual hobby for a matter of months. My diligent husband created Excel spreadsheets to calculate our votes with a statistical margin of error. And we came back repeatedly to the answer that our school of choice was the best fit for him, and the best fit for our family. Somehow, as the start date came nearer, that sense of calm ration deserted me.

The early childhood support team we clung to for the past two years changed over to an elementary team fielding a much larger caseload. That first team had walked us through the initial evaluation process and saw me cry in the car before driving away. They watched as we learned to parent: teaching toilet training and enforcing the wearing pants out of doors. The new team may certainly be just as or more proficient at their jobs, but saying goodbye to our trusted support team was challenging.

There was a different aspect of parent presence in preschool. If we arrived 15 minutes late due to an early morning meltdown, no explanation was required. Because our preschool had no busing option, I recognized the students and their caretakers by sight, if not by first name. Asking for patience, and sometimes some leniency, was less of an issue when it impacted one partial-day classroom.

We attended open house to meet the teacher. I took our gaggle of children for trips to practice the school bathrooms and to try out the playground. Nearly a month in advance, we were counting down the days and doing everything possible to make the transition as smooth as possible: countless library books about school, a paper chain countdown, personalized school supplies, a list of acceptable lunch options. We let him plan his entire first day of meals and snacks, and there were not nearly enough vegetables. 

On the first day, I was numb with fear, excitement and pride. Walking away from him was one of the hardest moments of my life. We made it through those first few days where he and I came home yelling and crying and trying so desperately hard to adjust. He didn’t eat, drink or use the bathroom. I didn’t sleep. I read up on the rules and manuals; he played Legos in isolation. We gave ourselves more time, and I wrote a lot of emails. I nodded and put on a brave face.

I am starting to know his new support team on a first-name basis. He has moments where he is overcome with excitement about his new library card or he found the sticker I put in his lunch box. One day, he came home and spoke about another child by name! Granted, this classmate had sustained a broken arm during recess, but I was so encouraged that he had connected with another person that I enabled the making of a “get well soon” card.

There are glimmers where a new baseline is emerging, where he and I have come to an equilibrium once more, a balance of getting by, and some hard times, and having fun.   

And then today, this came home:

school project about best friends for kindergarten class

My gentle and loving 5-year-old boy wants to complete the picture with a drawing of the stuffed puppy he has slept with since he was 1. I am so scared. I have to trust that the other parents, parents of children I have never met and whose names I do not know, are putting in their work, too. How will these other 5- and 6-year-olds respond to a boy whose best friend is a stuffed animal? Will they see an opportunity to be a friend to him?

Letting go of control and being willing to risk it, to trust my boy to his own limits and to trust others with his heart, is my experience of kindergarten. We can do this together.     

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To the Teachers Who've Helped My Son With Autism

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We just got back from my son’s back-to-school night. John is a 15-year-old with autism spectrum disorder, and he is in an all autism out-of-district school. John has been in this type of setting since he was 3 years old, and this is the third and likely final school he will be in.

Every year, back to school night makes me reflect back on the early years, and as my wife is a special education teacher, it makes me think about the exceptional people my son has had in his life.

We were terrified in those early years, my wife and I. Everything was so new, the future so unknown.  Who would he become? How would he get there? Who would help us? Were we doing the right thing? And the most important question of all – were these the right people? These questions can haunt you as an ASD parent, especially at the beginning. Before you develop a sense for who’s right for your child and who’s not. Even if you think you have a bit of instinct to rely on, you’re not sure your instinct is even reliable. You are putting a lot into someone’s hands on nothing more than faith.

We were very lucky in those early years. I would venture to say we didn’t even know how lucky we were until we got to look back on it. John’s first school was a warm and loving environment, a place my wife described as “like walking into a warm hug.” For most of his years there, he was in a classroom with the same teacher and the same assistants. This team of people was nothing short of exceptional. Their level of dedication and love for my child is unmatched to this day. We’re still in touch with his teacher from those early years. She still likes to know how he’s doing. I don’t think her love for him ended when he aged out. You can’t put a price on that.

His second school was a much more formal environment. It was what he needed as he was getting older and a focus on academics became more important. It was hard for us as parents, adjusting to this environment, though he did exceptionally well. There was no more daily communication of
every detail from his day. He had more responsibility than he used to for things like homework. He was being challenged more. He also had the same teacher and aide here for a good long stretch of time. At first we had trepidations, but by the end of those four years, we knew that we had hit the jackpot a second time.  It became clear that this second set of people in his life were as dedicated and
caring as the first set of people.

Around the age of 14, John also outgrew that environment. We had to start looking for other schools, and we heard about one within a decent busing distance. Friends were telling us to see it, and we finally did. After just a few minutes, we could feel that it was the right place for him at this time in his life. And the people — could this be happening a third time? Could we really be finding another place with people of the same caliber as the first two?

We moved him in mid-school-year last year and this year he’s back for the full year. He is joyous
about this place. He’s surrounded by a team full of people who get him, who challenge him and who help him to be a better him. And after back-to-school night, I can honestly say these people have
the same level of dedication and caring as he had the first two times.

I don’t know what we did to be this lucky, to find good people at every turn. To find people who help our son become the best person he can be. I do know, however, that it’s not something you can buy or beg or borrow or steal. It’s a gift from the universe, and I’m eternally thankful for it.

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7 Things I Want My Friends to Know After My Daughter's Autism Diagnosis

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Yesterday, I sat in that haze again. I have kept myself busy. I enjoy the exercise I get in while my children are at school, but I don’t enjoy it nearly as much as I would like to — because I am constantly wondering if my child is safe. I am constantly wondering how I can move her forward and provide her a life that will be fruitful and give her the amazing gifts I hope to provide for all my children.

As I put my little ones to bed last night, I reached out. Though I could have called and polled my friends, there was a part of me that didn’t want to talk about it — but I did want the answers. I have been part of an online mom group for years. I figured they may have some insight, so I shared this post:

I have had wine to be honest, but I swear some days I just wish I knew what Serrie was thinking. I am so grateful for all I have, but there are moments I wish I knew. Is this normal? I wonder because so many of my friends “avoid” talking about Serrie… Why is our society so afraid of special needs? It makes special needs families feel lonely.

I am grateful because within just a few minutes I had responses. One response that surprised me was one noting a bit of discomfort due to being politically correct or fearful of saying something wrong. I am the queen of saying everything wrong, so I guess it never occurred to me when people were quiet, it wasn’t always a slight or a way to distance oneself — sometimes people may not say anything at all because they think they are doing what is best. No matter what they think is best for me (or other parents with a new autism diagnosis), the worst thing I can hear is silence. That lonely feeling I get when I think of what my child is thinking or wanting to say is magnified with friends who are silent. Every time a friend says “I saw her smile,” it lights my life. Every time a friend says “She said xyz to my child,” it gives me hope. And every friend who takes the time to check in or listen as I cry truly touches my heart.

I am fairly certain I am not alone — so today, I am letting you know my take on being my friend as I parent a child who has autism:

1. I am the same mom (and friend) I was before. I am no different from you, and though I have a child with distinct challenges, my challenges are no less or more important than your own; they are just different. I still want to hear about your child. Even though I may wonder about my child meeting similar milestones, I am truly happy for you and the child in your life.

2. I still need you. Perhaps I need you now more than ever. I dreamed, just like you did, about how my child would move through life, and I am now saying goodbye to some of those dreams. I am slowly creating new dreams and new goals, but it’s a process I have never walked before, and I need all the support I can get. Please don’t leave me alone. I need you. One day, I hope to be able to be the one you need once again.

3. My child is still my child. She or he is no more or less than my other kids. I love my child. Completely. I may feel overwhelmed or defeated sometimes, but that does not mean I love my child any less than I did the day before my child’s diagnosis. Please don’t ever ask me to leave my child out. That is the most painful thing you can do.

4. If you don’t know what to say, just be there. When you turn your back, walk away or say nothing, I wonder what I did wrong. I am already struggling; leaving my side can only make me struggle more. Please know your presence is truly appreciated, and though I may not know how to thank you, I am grateful you are near.

5. This road has major ups and downs. You may think I am “over” how the diagnosis has changed our lives. I may be “over” the initial shock, but as I travel this new journey, I will find myself having amazing highs and amazing lows. That may transfer to my daily life and my mood. I am sorry. Bear with me. This is a journey that has no end.

6. If you want to help, help with my other kids. One of our greatest fears is trying to meet the needs of our child with special needs and neglecting the needs of our other children. Though we may not be able to reciprocate immediately, it’s truly appreciated. This summer my kids sat through up to seven therapies a week. Those times they got out of it were truly gifts — not just to them, but to me.

7. If I say I can’t go or a party is too much, trust me: It’s not you. I am learning to understand my child’s unique needs. As I understand them, I will be better prepared to venture out into the world. I will be able to take you up on outings and parties, and I will have your support in those events.

Parenting is not easy. I have had the fastest education as to exactly where we as parents succeed and fail. In the past, I am certain I have not been the friend I should have been when my friends experienced a new diagnosis, but now I have a better understanding as to how. As parents, let’s learn to love our children and each other’s children for who they are without turning our backs — but instead by embracing the unique qualities of each child.

A version of this post originally appeared on Messy Blessy Momma.

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The Significance of My Son With Autism Picking Out His Halloween Costume

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As the parent of a child with autism, there are things I just don’t experience the same way the parent of a neurotypical child might, and it can be disheartening. Though guilt rises up in me admitting this, when approaching some situations, I’ve asked myself, “What’s the point?”

In May, my husband and I had plans to take our son, who’s on the autism spectrum, to see “Frozen on Ice.” My son came down with something, and we took him in to see the on-call doctor who prescribed medication for him and then went on to say that we probably shouldn’t take him to the show. “He’s not contagious,” she said. “But it’s a better idea to stay away from crowds so he doesn’t pick up something else. Plus, he doesn’t really understand so he won’t know what he’s missing anyway.” I saw red and stopped listening, calmly excused myself, and made it to the car before my husband and I both shared tears over her tactlessness.

She said this garbage in front of my son. She had “known” him for about five minutes. And in that small amount of time, she determined what he could understand and what he couldn’t. She assumed.

I seethed. My son loves “Frozen.” He loves Bubble Guppies. He asks to go bowling and to go to the beach. He picks certain foods and avoids others. He’s not “stupid.” He’s not unresponsive. He’s alive and well, and he’s a person with likes and dislikes just like you and me.

So we took our son to see “Frozen on Ice.” And he watched. And he smiled. And in my head, I punched that doctor in the throat. Because on every level, human and professional, she was dead wrong.

Friends and family members jumped to defend me and shared in my anger when I posted about the situation on Facebook. They supported me and commented on all the pictures of William clapping along with his favorite “Frozen” songs. He wasn’t 100% himself because of his ear infection, but he had a couple of days of antibiotics in him by the time we went and damn it, we were going to “Frozen” on principle alone at that point.

One of my friends genuinely asked me via private message, “Would William know the difference?” I thought about it. He had never been to the Amalie Arena. He had never seen any show on ice. He had never seen a person ice skating, come to think of it. That had nothing to do with autism, though. So I told her he understands we are seeing “Frozen.” I told him it’s in a big arena. I told him we’re going with his aunt and his daddy. He could think we’re just going to watch the movie. But couldn’t any 4-year-old think that? Any child might not be able to picture or grasp something brand new to them. And I like to think even if he couldn’t picture the entire setting, he was looking forward to it.

I think people, like this on-call doctor, often believe there is no point in attending big events or attempting to celebrate holidays with children with special needs. Because they don’t react the same way. Or they can’t experience it in the same way. But this is funny to me because how many people do you know who take their infants to Magic Kingdom to meet Mickey Mouse, something that a barely walking child will have zero memory of? How many spend hundreds or thousands of dollars on Christmas gifts for a child who will forget the toys and play with the boxes? How many parents and grandparents take toddlers to the zoo, pointing out animals and trying to teach them new words even if they’re distracted by other things? How many of us throw Pinterest-inspired first and second and third birthday parties that are really more for the invitees than the guests of honor?

Here’s the thing: memories aren’t just for the child. They’re for the parents, too. We do these things to see our children smile, sure. We do them to build our families. And we do them to make ourselves happy, too.

Every year, I’ve selected William’s Halloween costume. I remind him how to say “Halloween,” “trick or treat,” “pumpkin,” and other seasonal phrases. But it’s hard repeating myself year after year. I shouldn’t be teaching my 4-year-old to say “trick or treat” when that was all he could say two years ago, right? It’s hard. But you know what? He is what we have. He is who we have. His abilities are progressing every year. So we embrace it.

He was an astronaut. Then Jake and the Neverland Pirates. Then Danny Zuko from “Grease.” Then Albert Einstein. This year, because he loves watching baseball — specifically, the Tampa Bay Rays — I decided to buy him a Chris Archer jersey, find some baseball pants and cleats, and make him a Tampa Bay Rays player. I knew he would like it. I’ve enjoyed making those memories, not just for him, but for me and my husband and our family members and our hundreds of Facebook friends who think William is pretty badass.

But this year, I faced a couple of obstacles…

One of my friends asked me about William picking his costume. Though I’m pretty open about our challenges, people — out of both ignorance and sheer curiosity— ask questions or make comments that remind me that we’re different. I got sad. Would he ever pick his own costume? Should we even try? What’s the point?

Then, William all of a sudden developed a sensory issue with button-up shirts. I started worrying that the jersey thing wouldn’t happen. He wouldn’t wear it. Should I even try to get him to wear it? What’s the point?

On Labor Day, my husband and I took our son for a ride to the Spirit Halloween store. I thought maybe, just maybe, he’ll walk up to a costume that catches his eye.

Wrong.

My son, like always, wanted to run up and down the aisles over and over again. He wanted to push the button that awakened a screaming banshee hanging from the wall over and over and over again. He wanted to see the red lights on the zombies and the smoke coming out of the wolf’s mouth.

I sat on the floor of an aisle and texted my best friend while my husband chased my son. “There’s no point,” I sent her. No point in asking him to pick a Halloween costume. While little boys and girls around me pick their Teenage Mutant Ninja Turtle and Elsa costumes, my little boy repetitively pushes buttons and runs in circles. Oblivious. I spiraled. No point in Thanksgiving. No point in Christmas. No point in Easter. No point in birthdays. He doesn’t even notice. I felt tears coming.

Then a text message came in.

“He’ll get there,” she answered. And she was right.

I stood up, put on my bravest face, and walked toward where my husband and son stood. I was determined to try, and I was determined to not fall apart if my attempt failed.

I took my son’s hand and said, “William, first we need to pick a costume. Then we can push the button.” He said, “Push button.” I said, “First, let’s pick a costume.” And I had an epiphany. Choices. Too many choices.

I walked up and down the aisles and selected things he would recognize. “Look, Will, it’s Woody from ‘Toy Story!’” I said. “Cowboy,” he said. “Look, it’s Superman!” “Superman!” he repeated. “And this is Dracula from ‘Hotel Transylvania.’ We watched that night.” I did my best Dracula impression,

“Dracula bleh, bleh, bleh.” And he laughed. “And this one over here is Hiccup from ‘How to Train Your Dragon.’ He’s kind of like a knight because he’s wearing armor. We’ve seen both of those movies.”

I put all four costumes on the floor. “Do you like any of these?” I asked him. He pointed. Pointed with his finger. Which he never does. Anyone who has a child on the autism spectrum can understand the celebrations that come with seemingly meaningless milestones like this one. He pointed at the vampire costume and said, “Dracula bleh bleh bleh!” And he smiled.

He picked his costume, guys. For the first time. He probably didn’t pick it like other kids might. But he picked it.

We did the parent thing and put the shirt, pants, and cape on — just to make sure — which he yanked a couple of times, and then we distracted him by giving him what we promised: the chance to go push the button to make a monster scream.

Either way, he ran through the store, his Dracula cape flying behind him. He pushed the button, flapped his little arms excitedly, and left the costume on for another 20 minutes. It’s a winner.

Sometimes, it seems like there’s no point. It seems like he won’t understand. It seems like we can’t experience the “normal” things. But really, there’s always a point. Always. Because he’s the point. And he’s a seriously cute Dracula… bleh bleh bleh.

little boy dressed as dracula

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When My Mentee Said No Girl Would Ever Date Him Because He Has Autism

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It can often feel challenging trying to find a relationship. When you add on having difficulties with social interaction due to autism, it may seem impossible.

I recently experienced this situation with one of my mentees while we were discussing National Disability Employment Awareness Month in October. I asked my mentees to share five goals they have for in the next academic year and then five goals they have for five years from now. While many put down going to college, finding a place to live and landing a job, the majority of them also shared with me about wanting to find a partner.

One of my mentees in particular shared with me the hardships of dating on the spectrum.

“Boys are usually suppose to ask out the girls and that terrifies me,” he said. I looked at him with compassion as I used to be in the same boat as him as a high school senior getting ready for a transition that tends to come with a great deal of uncertainly. I thought about my experiences dating as someone on the autism spectrum when I was his age. I always had to be the one to approach a girl, whether it was about asking her out on a date or to be my girlfriend. Although it didn’t feel like the sensory overload experiences I had when I was younger, it felt like another overload to me.

While we continued our conversation he asked me why he was always the one who had to put himself in the situation. Why, if he established a rapport with a girl who was interested, couldn’t she ask him out instead of the other way around? He then dropped a bomb on me when he told me that he thought no girl would date him because he has autism…

I blurted my response out really quickly:

“Don’t be so hard on yourself. You are bright. You are gifted. And one day, someone is going to love you for exactly you are. When you find that right person… it will work, regardless if you ask her out or she asks you. And it will be wonderful. ”

I meant that. Every word. You see, my mentees are smart and have amazing interests. That’s why I know, when they find someone who has those similar interests they will be able to find a confidence in themselves that they may have never understood they had, and be able to thrive in relationships. Regardless of social quirks and being shy at times, each one of them has someone out there for them.

What I hope for his future is that any girl out there will take a chance on him, much like I hope any girl out there today would take a chance on me. Ask him out on a date, be there for him, and see what happens.

For those out there searching for love, it’s out there and you can find it one day. Keep looking, and when that person comes who you connect with, take a deep breath and pursue what may be. There is something in you that only you can offer in this world. Never forget that.

In 2015 I released a book called Autism and Falling in Love based on my experiences trying to find love on the autism spectrum. You can learn more about the book here.

A version of this blog originally appeared on Kerrymagro.com.

Image via Thinkstock.

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