Zaivier Hensley doesn’t like to stare directly at cameras because of the flashing lights.
So when the 5-year-old, who has autism, met Santa at the Fox Run Mall in Newington, New Hampshire, on Dec. 6, the pair came up with a clever way to take a photo:
This Santa was part of Fox Run’s “Caring Santa” program, where a sensory-friendly environment is offered to any child who prefers one.
“For once we were not the people being stared at or whispered about. We weren’t being accused of ‘disrupting’ anyone else’s experience or told we should just go home and forget about it by the ever-present people with unwanted and less-than-helpful advice,” Zaivier’s mom, Catherine O’Meara, told The Mighty in an email. “We got to be ourselves in a place where no one batted an eyelash when we had to walk exactly seven laps around the village before we could go see Santa. It was OK that Zaivier was vocally stimming, jumping and spinning to calm himself while we waited for his turn. And it was OK that he needed extra time to warm up before he gained the courage to even come within arms length of this man.”
“It’s a little slice of the one holiday experience we ever had where the two of us were just enjoying a nice tradition,” O’Meara added. “We didn’t have to qualify why we went, or why it was important. We just had to enjoy ourselves.”
I met Denial 10 years ago. When she first came into my life, I had no idea the impact she would have on me. Denial was the friend I clung to the most. The friend I counted on to get me through some tough days. The friend who was always there when I needed her… and even some days when I didn’t. Denial was the friend who plopped down at my kitchen table, slept off her wine buzz in my spare bedroom and took up residence inside my head. And she never even brought wine. Pfft.
Denial also helped me block out things in my past that were tough to look back on. Things I choose not to remember because, well, Denial suggested I shouldn’t focus on “those” moments. And I listened to her. Denial is a tough cookie.
For many of us who had “The A Word” sort of whispered across an expert’s desk, Denial is a friend we spent at least a little time with, sometimes before we heard the word and sometimes even after. Denial is the friend who stays too long, talks too much, spouts her opinions way too often and is a horrible influence on you. In short, Denial is the friend your mother always warned you about. And just like when you ignored your mom’s advice on that “no good blankety-blank-blank boyfriend,” chances are, you ignored her about Denial too. And just like with your “no good” boyfriend, you eventually had to figure it out on your own, in your own time and in your own way… only this time without matching tattoos.
Denial is the friend who usually shows up right after Fear leaves. So, just when Fear closes the door and you finally think you’re alone, you’re reminded that you’re not. Fear and Denial are the friends you no longer really hang out with, but, you know they showed up in your life for a reason…. and a season… or two… or 10. And rather than beating yourself up for your poor friend choices (just like you do for that old boyfriend and that tattoo), you have to remember you chose them, just as much as they chose you. And that’s OK because you’ve since moved on, and thanks to them, your eyes and your heart are now open.
I’ve decided I can continue to beat myself up for running with the wrong crowd for so long, or I can laugh at the impact that crowd had on me and how much I’ve grown since then. Like with most things, I choose to laugh because laughter really is the best medicine, along with a good bottle of red wine that a real friend brings over when she stops to visit.
Here are 12 ways I know Denial showed up and stayed too long:
1. Back when my son Ryan’s sensory system was on such heightened alert, Denial told me when I was blow drying my hair, it wasn’t the sound of the hair dryer that caused Ryan to run around like a wild banshee screaming, it was because he was upset I was ignoring him and focusing on my latest hair style. Made perfect sense.
2. Denial also assured me Ryan’s lack of eye contact, especially when he looked out the corner of his eyes, was not because making eye contact was difficult for people with autism, it was because he was too busy looking at things much more interesting than his boring, old, nagging mom who constantly said, “Look at Mommy, Ryan.”
3. When Denial stopped by and I would tell her how sad I was that Ryan didn’t have friends, she assured me it wasn’t because Ryan struggled to make friends, it was because he hadn’t found any friends worth his effort. That was so much less painful to believe.
4. Denial also led me to believe when Ryan would spin and spin and spin under the ceiling light in our kitchen, it wasn’t because he was trying to self regulate, it was because he was spinning to see where the screws were on the light fixture so I could change the lightbulb (even if the lightbulb did not need changed).
5. The screaming, crying, meltdown at every single haircut was because Ryan wanted to keep his hair long and every time I walked him into the hair salon, I was betraying his wishes, Denial assured me. She poo-pooed my concern that the tears and the screams for help could be a sensory issue and perhaps a red flag for (whisper) The A Word. He does prefer his hair long, so Denial may have been onto something.
6. When Ryan would cry, “No Miss Joanie’s class, no, no, no!” every time we pulled into his Music for Children Class, it wasn’t because the banging and clanging of drums, tiny cymbals and maracas by a group of 2-year-olds was too overwhelming for him; Denial assured me that with Ryan’s musical gift, his protest was because he felt they should be singing “Ava Maria,” not “Twinkle, Twinkle Little Star.” (Seriously, “Twinkle, twinkle little star, how I wonder what you are” ? It’s a star, the lyrics just told us it as a star.)
7. Denial always made me feel better when I would watch Ryan pull away from other people’s hugs or touches because she assured me it wasn’t his dislike of touch that caused him to behave that way; it was because no one gave hugs like me. I’m a good, big hugger. Seriously, I am.
8. Every time we tried something new or different and Ryan would wig out, Denial told me it was not autism or the need for things to remain the “same.” It was because the old way worked, so why mess with what works?! If it ain’t broke, don’t fix it.
9. Denial also said new clothes, new shoes, new coats, etc. weren’t due to Ryan’s extremely sensitive sensory system; it was just because Ryan knew how much I loved new clothes, new shoes, new coats, etc., and he wanted me to spend the money on myself. Such a sweet, sweet boy. (Dang, that Denial was goooooo-ooood).
10. The reason Ryan ate the same food, day in and day out, wasn’t because he had autism; it was so I would always know what to make him and I wouldn’t ever get it wrong. Because when you did get it wrong, well, suffice it to say, even Denial would leave the kitchen before the blow up began.
11. “Stop sweating it!” Denial would shout at me when I would obsess over Ryan’s scripting of videos, movies and games. “Maybe Ryan thinks ‘Thomas the Tank Engine’s Day’ is more exciting than his own so that’s why he talks like Sir Topham Hatt and not Ryan.” Thomas did have a fascinating life on the Island of Sodor, and well, we do not live on an island.
12. “He’s fine.”
She did have that last one right, but, for all the wrong reasons. Denial told me Ryan was “fine” because that’s what I wanted to hear, but, believing in “fine” didn’t get Ryan the services he needed. Ryan was fine… in fact, he was perfect, but he still needed support — support that as his mother I couldn’t give him, and that was the toughest thing that Denial never said. Yeah, it was time for Denial to get out of my kitchen, out of my spare room, out of my head.
I admit, it was hard telling Denial to leave, and sometimes, I would let her pop in even though I knew I shouldn’t (just like that boyfriend). Heck, sometimes she still does, but, I had to let Denial go to make way for the friend I really needed more than anyone… Acceptance.
One day, Acceptance did show up, and she helped me see all Denial kept me from seeing. Acceptance didn’t stay as long as Denial because I didn’t need her to. Once Acceptance came and said her piece, my eyes and my heart opened, and I knew I could manage on my own… once I found Ryan the supports he needed to manage on his own.
Denial was a huge part of my journey. Just like real friends come in and out of your life, regardless of how long they stay, they leave a mark that you might not be who you are today without. So, even though Denial led me astray for longer than I would have liked, I don’t think I would be on the path I am today without her, and therefore, Ryan may not be where he is today either.
I’m sure Denial quickly left here and sat down at someone else’s table and set up residence in their head. For those of you running in the same circle with Denial, I want you to know she is there for a reason, but don’t let her stay long. Your child’s future depends on you making it on this journey without Denial whispering in your ear. So, when she stops to visit, make her bring the wine and send her on her way quickly.
You got this without her. I promise you do.
Follow this journey on The AWEnesty of Autism.
It’s the most wonderful time of the year! There are lights everywhere, people are crowding stores to find the perfect gifts for their loved ones, there are cookies to bake, family to visit and holiday cheer all around. I’m not kidding at all — I would love if we could make “Christmas season” last all year round. That being said, Christmas can also be an extremely difficult time for kids and adults with autism. There are lots of aspects of the holiday that don’t make for a very autism-friendly Christmas.
The lights, smells, crowds and all of the things that we love about Christmas can be extremely overwhelming to someone who struggles with sensory input. Even something as simple as visiting family for Christmas dinner can be overstimulating and downright painful to someone with autism. So what should we do? Hiding away from November to January isn’t really an option, and we shouldn’t take away the joy and celebration of Christmas just because it’s hard for our kids to participate like others.
This is where hosting an autism-friendly Christmas comes in! This post will be especially helpful to family members who aren’t quite sure how to help a child with autism who will be visiting them for the holiday. It can be really difficult for extended family to understand the complexities of autism. They honestly want to make the kids in their family feel comfortable and safe, but it can be hard to know how to do that practically. That’s why I decided to put together this handy little guide to an autism-friendly Christmas.
First things first: ask ahead.
This one is probably the most important suggestion in this entire post. Ask the parents, or the child if you’re able, how you can help them with the holiday. Maybe they need to arrive before everyone else to transition into the new environment before there are crowds of people there. Maybe they need you to take pictures of different areas of your home so they can explain them to their child ahead of time. The possibilities are really endless. Mothers with autistic kids will come up with the most creative ways to help their child have the best possible time. Trust me: just ask her and she’ll have a few suggestions for your autism-friendly Christmas.
Consider the food.
With my son, one of the biggest struggles of going somewhere else during the holidays is making sure there will be something he can eat. Veggies are out, and noodles, mashed potatoes are petrifying, the only acceptable meat is frozen chicken nuggets and he’s hungry all the time. That doesn’t make it easy to head to families’ houses for the holidays. We bring lots of snacks (crackers, chips, etc.) and we try to find him something from the meal he can tolerate, which is often rolls.
Now, I can’t tell you what foods will be considered “safe” for your family member with autism, so go back to point one and ask ahead! I know preparing the food is one of the most stressful parts of hosting Christmas, and we don’t want to put more of a burden on you. That said, hosting an autism-friendly Christmas could be as simple as making a peanut butter and jelly sandwich or microwaving some chicken nuggets. Trust me, your family members will appreciate the effort!
Be flexible with expectations.
We often have expectations of how the holidays will go that we don’t even stop to think about. The kids will get there and give hugs and kisses to all the grandmas and grandpas and aunties and uncles, then they’ll run off and start happily playing with their cousins. When it’s time to open presents there will be tons of excitement and joy as the kids all happily rip off the paper to see what goodies are inside.
These expectations may be way off base when you’re considering a child with autism. Letting a child with autism set the pace for certain interactions is going to mean less meltdowns and less headache for everyone. Maybe they’ll give high fives to family instead of a hug, or maybe they just need their space. Try to be OK with whatever way they show affection, or even if you can’t tell they’re showing it at all. Opening presents in a house full of excited kids can be oversimulating for everyone, let alone kids with autism. Your autism-friendly Christmas may include the child opening presents one at a time slowly over the night and not in one chaotic free-for-all.
Have a sensory retreat.
I am not suggesting that you have a full-blown sensory room prepared for your family member with autism to hide away in, though that would be awesome! But designating a space where the kid can hide away for a bit and regulate his sensory system is vital for having a happy, autism-friendly Christmas.
Maybe this simply means that you close off your bedroom so they have a quiet space to themselves when they get overwhelmed. Maybe you set up a quick sensory bin to help them calm down. Even something as simple as a comfy chair away from the chaos with a phone and some headphones can help a child with autism calm down and enjoy the holiday. Again, just ask the parents or the child what they think will help. They’ll probably even bring along a weighted blanket or some noise-canceling headphones to help out.
Explain autism to other family members (especially kids).
Autism isn’t always the easiest thing to understand. First off, it is a huge spectrum, so it’s hard to know what to expect. Maybe your family member will only struggle to make eye contact, or maybe they’re completely nonverbal. Either way, it’s still autism.
It can also be really difficult for kids to understand because kids tend to think in black and white. Often, other kids in the family will think the child with autism is being favored or is simply naughty. It’s really important to explain to kids in an age-appropriate way that their cousin’s brain works differently, so they can’t always do things the same way other kids can. Sometimes they don’t share toys, sometimes they don’t eat the same foods and sometimes they don’t answer questions. All of that is OK because we’re all different, and that’s what makes us special. Trust me, you’ll end plenty of fights by helping the other kids understand why one of them gets chicken nuggets while they have to eat their veggies!
Overall, be loving.
Having an autism-friendly Christmas can seem difficult, but the changes needed will have a small impact on the host. They will have a huge impact, however, for a child with autism and their family. We often spend half of our family holidays apologizing for one thing or another, handling meltdowns or intervening in arguments. The other half is spent trying to enjoy our holiday (and maybe grab a bite to eat) while stressing about when we will need to start apologizing, handling and intervening again. Making some small changes and putting forth a bit of effort into hosting an autism-friendly Christmas is one of the best ways to show your family that you care this year.
Let them know you love your family member with autism and want to help however you can. To me, that’s the spirit of Christmas.
Follow this journey at This Outnumbered Mama.
The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Lead photo source: Thinkstock Images
I don’t always want to talk about difficulties. I don’t believe it’s beneficial to focus on negatives constantly. But I also believe we live in a society that attributes powerlessness and weakness to vulnerability, and I would like to dismiss that myth.
One of the biggest challenges I face as an adult on the spectrum lies within the realm of my parenting duties. Not so much the act of parenting itself so to speak, but more so living up to my children’s expectations in regards to what society says a parent is supposed to look like.
I have tried, with what I believe to be an enormous amount of effort, to instill certain beliefs in my children, one of which is that everybody is different, including parents. I think they understand to a degree, but I do believe there remains a frame outside their general understanding they have yet to reach.
The reason I say this is because in as much as I believe they truly love me as I am, I also believe sometimes my differences frighten them. I’m not talking about the kind of fear that comes with aliens or monsters. I’m talking about the kind of fear that comes with feeling alone and uncertain. I don’t think they know how to say it, but I can see it in their eyes sometimes. It’s a feeling that I am all too familiar with. The times when they should be able to believe, beyond the shadow of doubt, that they can lean on me aren’t always as simple as they should be.
Parents — as a general rule in story books, television and mainstream society — are deemed fearless. Unafraid with an infinite amount of bravery. And even during the times when they don’t have these traits, they still pretend to.
But what if a parent was afraid? What if, in addition, they were completely incapable of hiding their fear? What happens then? Well, let me tell you.
My 14-year-old is an athlete. She is exceptionally talented, witty, intelligent and wise beyond her years. She is my compass in most social situations when I feel uncertain. I am eternally grateful to have been blessed with such an amazing kid. She has been playing with the same soccer team for about six years now. It is a top level that participates in many out-of-state events that require travel and frequent overnight hotel stays. It’s probably one of her favorite things about the team. She has a fancy for all things, well, fancy. I’ll add in here that this type of fancy also happens to be my least favorite part of the whole experience.
I have severe anxiety when it comes to changes in routine, leaving home, not sleeping in my bed, hotels and bugs. I have up until this point forced myself to submit to these trips. Taking down myself and everyone around me in the process between the pressure and the punishment for not being able to handle it. I have tried to make adjustments: car-pooling, sharing rooms, sending her up with teammates, canceling at the last minute and even just trekking it alone with her while putting myself in a compromised state physically and emotionally.
The reality is this the amount of anxiety traveling creates for me is overwhelming. If I can’t go and come home the same day, I can’t go. It’s as simple as that. I have accepted that this is a part of who I am. Not that I have succumb to the fears and refuse to overcome them. This is different. This is the way my brain is wired, and rather than attempt to change something biologically certain in my DNA, I have decided to work towards a more attainable goal of working around it.
This weekend we are set to play in Jersey. Initially, I booked a room and invited a friend to come along for moral support. Then I checked the reviews, which had multiple reports of, uhm, bugs. Reservations canceled. I researched other hotels but found nothing. I made the decision that we will go and come home both days. She gets to play, and I feel safe. It’s all about compromise, right?
Well, sitting across from my daughter at the dinner table as I broke the news proved to say otherwise. If I said she was pissed, it would be an understatement.
Part of me was angry. How could she not be more considerate of my feelings? Hadn’t I raised her better than that? Of course I had, but this was one of those things I spoke of earlier: The things that lie outside of her understanding.
She gets that I am afraid of certain things. She understands. But beyond that lies the extent of my fears and anxiety and the emotional and physical repercussions over having to withstand these anxieties under extreme pressure in the situations that I am expected to perform. She doesn’t know what goes on inside my head. Her comprehension is only as big as her own life experience. And besides, kids shouldn’t have to understand certain things, right? It’s our job as parents to shelter and protect them.
But everything about our life as a family says different.
My children have been exposed to some harsh realities kids twice their age are unaware of yet. I am conflicted over the way it has affected/will affect them. I like to think they are attuned to the world and better prepared for the cold than most. But also, maybe they are missing blissful ignorance that comes with childhood. I don’t really know. Sitting across from her when I broke the news, which I felt was completely rational, it was evident we were not in agreement. She was angry, but underneath that anger I could see disappointment. Disappointment in my ability to measure up.
“Why couldn’t I just deal with it?” was what she seemed to say.
Even further beyond her disappointment, I could see that she resented me for making her feel like she was alone. My fears, my differences and my overall inability to be like the other parents alienates her. I tried to remind her of the times we went away and I was a panicked mess. It just didn’t seem to resonate on a level of understanding I needed it to.
I have lost more than a week’s sleep feeling anxious, scared, sad and guilty. I don’t want my children to ever have to carry my weight, but at the same time, I want them to be understanding human beings aware that in every person there are differences. And they should, in the best way they know how, honor and respect these differences. I don’t think people should ever compromise their health or well-being, be it physical or mental for the sake of fitting in, looking normal or to keep someone happy, especially a part of one’s family. I would never want my children to do that, and I can’t teach them to honor themselves and be honest about their feelings if I myself am not.
Part of me is happy she still sometimes thinks like a selfish kid, and that I haven’t forced her to grow up too fast. As she does get older, though, my hope is that my vulnerability and honesty will enable her to understand better and be more likely to deal with the world easier because of her direct exposure to all things uncertain. Parents are afraid, too. We are human just like them. The only difference lies in our direct experience with the world and what we have learned firsthand to be true.
So what happens when a kid finds out their parent is afraid? The kid learns what it means to be honest and doing so sees that it doesn’t make them any less of a person. The power lies inside that truth.
I don’t think anyone has this parenting thing down perfect. I do consider myself lucky to have been blessed with great kids. They may not get it all the time, but they get it. And that’s more than I can say for most grown adults today. I like to think I had a hand in that. Until next time, stay weird.
Follow this journey on Awkward Is Awesome. A View From the Spectrum.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
It’s that festive time of year where I insist my family sticks to all the traditions of years gone by, regardless of how old the kids have become or how horrific the tradition was last year. How quickly one forgets the swearing and cursing with each little hoof as we wander aimlessly searching for the perfect Christmas tree. Well, this year was no different. And after the tree was cut down, dragged to the car, rigged up in the family room (more swearing) and trimmed with ornaments of Christmas’ past, we made a solemn promise (through more swearing) that we will not do that again next year. Until next year rolls around, of course.
One tradition we all still love (I swear, it’s not just in my mind) is watching all of our favorite holiday movies. “The Grinch,” “Christmas Vacation,” “It’s a Wonderful Life,” “Bad Santa” (that one is for Mom and Dad only) and our all time favorite, “The Polar Express” — the magical movie that makes us all want to believe.
“The Polar Express” was dug out of the Christmas movie archives and watched on Friday night.
As we all snuggle in under our blankets with the glow of the Christmas tree lights and the warmth of the fire, I think regardless of age, regardless of time, regardless of how many lights have burned out on that glorious traditional Christmas tree, in those two hours, each and every one of us does indeed believe. Believing is good for the soul.
We ask that children believe in Santa, believe in flying reindeer and believe in a magical train ride to the North Pole, all things they can’t see, and yet, they do. You know why? Children believe with their hearts. They don’t have to see to believe. “The most real things in the world are the things we can’t see,” said the Polar Express conductor and sadly, just days after watching and believing, I watched a different video that showed me sometimes even when I did see, I didn’t believe.
After a night out celebrating one of our dear friend’s birthday and a quick stop at another friend’s Christmas party, my husband Dan and I decided to throw in a DVD of some of our home movies at 10:45 p.m.. It was the highlight of my week.
Yes, there was a lot of nostalgic tears and the astonishment of why I ever wore my hair that way, but, mostly I sat mesmerized by this face. In the videos, my son Ryan was 3, not yet diagnosed with autism, but, both speech and OT services were in place for “developmental delays.”
While watching the videos, I certainly saw some of what concerned me back then. The brief eye contact, the looking out of the corner of his eyes, the scripting of the entire “Charlie Brown Thanksgiving” video (which was freaking hysterical) and the way he was the only child in his daycare Christmas play sitting down, falling down and wandering around the stage. I saw in the videos glimpses of what was “different.”
But what amazed me, awenestly, what shocked me, was how in most ways he looked the “same.” The way he chased the dog, the way he asked for “another present for RyRy,” the way he followed his brother, the way he told us every shape of all the Christmas cookies he was baking with messy flour-covered hands and the way he ran to me, smiling from ear to ear after his daycare Christmas show and jumped into my arms with the most beautiful, heartfelt “Mommy!”
It was almost 1 a.m., and I couldn’t stop watching these videos. My husband was snoring loudly, and my daughter Emma was sound asleep with the glow of the Christmas lights shining on her face. I was alone with only these video images running through my brain, and the stark realization that at the magical, glorious age of 3, words like “developmental delay,” “sensory processing disorder” and “the A-word” were constantly at the forefront of my brain, blocking me from seeing and believing. This brain block caused me to focus on all I felt was “wrong,” blinding me to all that was “right”.
Ryan was funny, brilliant, snuggly, loving, rambunctious, beautiful and perfect, and I hate that I had to see that on a home movie. I hate that all those years ago, I did not see or believe… in him. Years later, through the lens of a camcorder I saw more that was the “same” than was “different.” I’m just sorry I didn’t see it with my own two eyes and believe with my heart as it was happening before me 11 years ago.
Ryan was, is and always will be awesome, and as I watched a much younger mom (with a horrific hairstyle) snuggle him, praise him, cheer for him and love him, I think even through my concern and fear, I always believed that, even though sometimes I failed to see it.
Sometimes you really do have to see to believe, and other times even seeing doesn’t help you believe. I guess that’s why believing… really, truly believing, has to come from your heart. Maybe back then, my heart was just too scared to believe what and who was right in front of me. Back in those days when the fear in my brain blocked the belief in my heart, I did in fact believe that “different” meant less. I worried that “different” stood out more than “same” and that “different” would always cause my heart to fear believing.
My hairstyle is better now, and my heart has certainly made a turn for the best. I am no longer a doubter, and every time I see my boy sing, every time I read a paper he has written for school and every time he almost knocks me down with his back pounding hugs, I hear “the bell ring.. .as it does for all who truly believe.”
Yes, I believe.
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