When a Stylist Lost It While Cutting the Hair of My Son With Autism

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I was surprised how much one afternoon at the hair salon threw me for a loop. My son, Nolan, and our family had been through so many tough moments that I thought I was more resilient, had a tougher skin and couldn’t get rattled easily. But I was rattled that day in the hair salon.

My son was born with a severe cardiac defect and has had five open-heart surgeries and too many other procedures and operations to count. He wouldn’t eat as an infant from being intubated so many times and had to have a feeding tube implanted in his stomach for a couple of years. During one of his early heart surgeries, he had three strokes and ended up on life support and nearly died.

His stay in the hospital was supposed to last seven to eight days, but he was there for three months. He was also diagnosed with autism at the age of 3.

We had been through a lot in those first few years and celebrated every small achievement like it was a world record. We had a huge party with all of our family and friends on his first birthday to celebrate that he had survived such a daunting year. He was a blessing and a miracle in so many ways, and we were thrilled with the little things and so happy to have moments that were typical in any family, like getting a haircut.

Nolan was 8 years old the day we went to the hair salon. He still struggled with language and sensory issues and had a hard time sitting still. I tried to set him up for success by saying we could go get ice cream if he and his brothers all sat still and did a good job in the salon chair. Nolan was repeating his plan: “Don’t wiggle, eyes up, sit still.” We had written down the plan on a little piece of paper so he could see the schedule: first haircut then ice cream.

When Nolan sat down in the chair, I explained to the hairstylist that he had autism and could tend to be hard to work with. I asked her if she was OK with that and she said she was.

As she began to cut his hair, he began to shift his shoulders up and squirm in his seat. She asked me to “hold him down.” I was thrown off by her request but tried to sit by him to calm him down and talk him through it. We practiced counting by twos and spelling simple words since this has always been a good way to redirect him. He did much better counting his numbers, and the hairstylist was able to use the scissors to cut his hair.

The calm, however, all fell apart when she took the clippers out. He got upset at the noise and the vibration of the clippers on his neck and began to wiggle out of the chair. I had been through this many times before and tried to explain to her that she needed to give him a minute to feel the clippers in his hand to understand it wouldn’t hurt. I told her he could be fearful and overly sensitive to things he felt could hurt him. For example, he would panic anytime someone tried to put a Band-Aid on him. After getting IVs and his blood drawn so many times, he associated Band-Aids with pain and trauma. Little things like that scared him.

At this point, the hairstylist lost it. She threw the clippers down on her cabinet and said, “He is done. I don’t have to put up with this. You should just shave his head and be done with it. Why does it matter if he has a decent haircut anyway?” 

Mary Levinson the mighty.2-001

In all of my time parenting Nolan, I have always worked hard to help people better understand him. I was used to people collaborating with me to find solutions, not being judgmental and giving up so easily. I asked Nolan to stand up and I did something I had never done before. I lifted his shirt to show her his red angry scars from his most recent heart surgery. As I started to well up with tears, I told her she didn’t deserve to cut his hair and he was one of the strongest people I had ever known and only the privileged got to be in his presence.

She was dumbstruck and began to stutter out a weak apology. I threw money on the checkout desk to pay for the haircuts and walked out shaking. I stood on the sidewalk with Nolan while my other boys finished their haircuts. I paced back and forth and tried to fight back the tears.

Then Nolan looked up at me and said, “I got my haircut so now it’s time for ice cream, right?” I started to laugh in that moment — it all became so clear. His simple interpretation of what had happened was all that I needed. He was proud he had followed his schedule, and he wasn’t worried about the incident in the hair salon. The purity in the way he goes through life was once again eye-opening for me.

He often isn’t able to analyze situations or to read people’s feelings, and I was so grateful for that innocence in that moment. “Yes,” I told him, “let’s get ice cream because you got your haircut.” Nolan and his brothers and I completed the afternoon laughing and having ice cream together. It turned out to be a fun outing for us all.

In the end, I didn’t even get his horrible haircut fixed. I saw his uneven hairline as a reminder that things aren’t always smooth, and that was OK. I would rather have a crooked, uneven but happy, resilient child than a manageable “perfect” one the hairstylist was looking for that day.

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12 Things I've Learned About Being a Special Needs Parent (So Far)

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As we all know, parenthood can be a daily challenge. When you’re pregnant, your hope is that your baby will be healthy and delivery will be without any complications. I never really gave much thought to what it would be like to have a child with special needs or what it meant to be a parent to a child with special needs.

Fast forward to year 12 with our son who has autism. This is what I’ve learned (so far):

1. I’ve learned to be my child’s advocate. I can stand up in a room and fight for what’s best for my son. There’s no time for stage fright.

2. I’ve learned to be an expert in acronyms like IEP and OT. If you don’t know what these mean, you might not be a SNP.

3. I’ve learned that doctors don’t always know what’s best for my son, and it’s OK to let them know that.

4. I’ve learned the school system may only give you the least amount of info needed when it comes to our son, and that getting the services he deserves and needs doesn’t just happen.

5. I’ve learned about real friendships through the tough times.

6. I’ve learned how to celebrate the simple things.

7. I’ve learned the cycle of victory and defeat can feel unending at times.

8. I’ve learned I’m now an educator. I educate others about my child’s strengths, potential and abilities.

9. I’ve learned milestones are different with a child with special needs, and they should all be celebrated! I’ve also learned how to see my “typical” children’s achievements and realize what is truly important.

10. I’ve learned how many other parents are in my community, and they are the strongest, most courageous and kindest parents you might ever meet.

11. I’ve learned to have perspective. Daily.

12. I’ve learned I’m going to keep on learning every day, and much of my learning will be from our child with special needs. He teaches me and those lucky enough to be around him daily.

Follow this journey on Know Different.

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For Years, He Was Underestimated. Now, This Teen With Autism Has His Own Film.

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Keaton Bicknell was diagnosed with severe autism at age 2. From that point on, many people underestimated him. But as of July 2015, he’s accomplished something that would be incredible for any 18-year-old: he wrote, edited, directed and composed the music for a newly released short film, “The Adventures of Pelican Pete: A Bird Is Born.”

Based on the book series of the same name, “Pelican Pete” is a combination of live action and animated scenes. Through Pelican Pete, a young pelican who wears a signature baseball cap, and his parents, the film teaches viewers about how pelicans build nests and raise their young.

“I thought [the ‘Pelican Pete’ story] would make an interesting short film for children on the strength of its ecological messages — much like ‘Ferngully: The Last Rainforest‘ or ‘WALL-E,’” Bicknell, who lives in Saint Augustine, Florida, told The Mighty in an email.

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Photo courtesy of Keaton Bicknell

Bicknell started working on the screenplay for “Pelican Pete” seven years ago when he was just 11 years old. Filming for the project commenced in January 2009. However, the animation studio he’d previously made arrangements with was unavailable. Unsure of what to do, Bicknell put his project on indefinite hiatus.

That’s where Dani Bowman, an animator from Los Angeles who also has autism, came in. Bowman, now 20, founded her own animation studio, Power Light-Studios, when she was just 11 years old. She now teaches animation at the Center for Autism and Dyslexia in Findlay, Ohio.

Bicknell reached out to Bowman in August 2014 to see if she’d help him finish the project. She readily agreed, and less than one year later, “Pelican Pete” made its debut at the San Diego Comic-Con Children’s Film Festival on July 12, 2015.

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Photo of Dani Bowman and Keaton Bicknell courtesy of Keaton Bicknell.
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Dani Bowman at the film’s premier at the Children’s Film Festival at San Diego Comic-Con International. Photo via the Pelican Pete: The Movie Facebook page

Bicknell told The Mighty that the film will be released on a broader scale in the fall of 2015, including a screening at the World Arts Film Festival in Jacksonville, Florida, in October. In the meantime, he hasn’t decided whether he’d like to continue creating “Pelican Pete” films or take his filmmaking in a different direction. Either way, there are numerous projects in his future.

“I’ve got lots of film projects racing through my brain,” Bicknell told The Mighty. “It’s not even funny.”

Take a look at some of the animations from the film below.

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Photo courtesy of Keaton Bicknell
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From the Pelican Pete: The Movie Facebook page
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From the Pelican Pete: The Movie Facebook page

Watch the trailer for “The Adventures of Pelican Pete: A Bird Is Born” below.

h/t Autism Daily Newscast

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When Our Two Children With Autism Connected in the Waiting Room

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Some people like to refer to my child with autism as “being away with the fairies,” “having her head in the clouds” or “living in her own little world.” I know they probably think they’re using harmless euphemisms, but sometimes such descriptions of my daughter’s withdrawal from social interaction feels backhanded and ill-conceived.

As my 6-year-old daughter, Sophia, mentally recalls all the excitement of the day by flapping, laughing and squealing, I smile. But when she screams and cries, I crumble a little bit inside. Her world is equally full of sensory nasties, and it doesn’t take much at all to turn her from joy to torment throughout the day.

Oh, how I would love to spend just a moment in her world to experience what she does. If only to know that it was a happy, joyful place and she didn’t feel sad or lonely.

The other day we were in the waiting room for Sophia’s specialist. I was reading an old magazine while Sophia was happily playing with a wire bead maze in the play area.

A teenage boy rushed through the automatic doors, past the reception and straight to the toy box next to Sophia. He found an old tin spinning top, pushed the brightly colored button on it and flapped wildly as it spun around on the floor while his mother spoke to the receptionist.

I smiled at the boy’s mother as she sat in a chair across from me. She smiled back. We both recognized the familiar flapping, rocking and excited verbalizations in each other’s child. We started chatting about our children, their sensory issues, schooling options and so on. Her world was my world. It’s always nice to speak to another parent who just gets it.

Just then, an odd thing happened. Sophia walked over to the boy, looked him square in the eye and smiled like she knew him. When he dodged her eye contact, she turned with him and purposefully tried to catch his attention. She wanted to communicate.

It was as if she was saying, “Hello there, it’s me, Sophia! We live in the same world, you and I.”

He turned and looked Sophia straight in the eye as if to say, “Hi, I see you. Thank you for seeing me, too.” He smiled and went back to joyfully spinning his toy.

For a split second, these two children connected. Devoid of verbal communication, they saw each other.

I wondered what Sophia saw in that boy who she instantly related to, and in turn, why the boy chose to respond to Sophia’s request for communication. All I know is that I felt so honored to witness the interaction. I looked over at the boy’s mother and knew she was thinking the exact same thing. There was no need for words. We just smiled at each other and felt happy that our children existed in the same world if even for a moment.

Doctors’ waiting rooms can be stressful places sometimes. But on this day, I left feeling happy, full of hope and burden-free.

Rebekah Corlett the mighty.1-001

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What It's Like for Me as a Woman on the Autism Spectrum

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My name is Cass, I’m a 30-year-old graphic designer and I have high-functioning autism spectrum disorder (ASD). Like some other women on the spectrum, I wasn’t diagnosed until adulthood. It was recent; in fact, it was only last year. It’s still very much a secret as well. I had no intention of telling anyone, but my husband accidentally “outed” me to my mum, so then I tried to tell one of my sisters and then I gave up on telling my family. Both my mum’s reaction and my sister’s reaction to the news was immediate and negative: “No you don’t have autism.” My sister called it a pathology. I was so hurt.

I tried a few close friends and they had similar reactions. All of them said things like, “I don’t see that in you” and expressed general disbelief. So I gave up telling people. My husband consoled me that it should be enough for me just to know, and not to look to others to validate what I know to be true. I married a wise man. So I stopped telling people. My other two sisters don’t know, my in-laws don’t know, the majority of people who know me wouldn’t have a clue. Being a designer does tend to give you latitude for being a bit quirky; I guess I chose my camouflage well.

My husband on the other hand was amazing, as he so frequently is. When I told him what my psychologist suspected, and what in myself I knew for certain, he was reflective. I could almost feel him working it through, then in his quiet way he said exactly what I needed: “I think that fits, too. How do you feel about it?” You see, he’d become something of an unofficial expert on autism. Our 4-year-old son had been diagnosed with severe ASD (among other things) nearly two years earlier.

What I don’t think people realize about women on the spectrum, especially high-functioning women, is that sometimes we can mimic and model behavior perfectly. I can only speak for myself, but I know that my “social mask” was in place by about age 16. If you met me now at a party or out socially, I would present as a highly social, outgoing and self-confident woman, and as much as I would like to be that way, I’m not. I struggle daily with things like anxiety, self-confidence, selective mutism, OCD, ridged thinking and trying to cope with situations that are unpredictable or out of my control. I’m photosensitive, struggle with crowds and too many different noises at the same time, and I’m funny about textures.

Professionally I struggled. Why call someone when I can email them? I took criticism, even in its most constructive and valid forms, as a personal attack. As one of my roles as a designer, I had to attend social networking functions that involved public speaking and making small talk with what seemed like a never ending sea of people. By the end of one of these functions, I’d go back to the studio, talk nonstop at high speed for about an hour and then I wouldn’t utter a single word for the rest of the day. If someone talked to me I wouldn’t hear them, it was like static on a TV ringing in my ears. I now know this is a sensory meltdown, and I try not to put myself in situations where this can happen. Even attending dinner in a crowded restaurant, lots of ambient noise, table conversation and close quarters will leave me needing frequent bathroom breaks or trips outside for space.

Motherhood is a challenge for me (like all mothers I know), and I struggle with the little things. I struggle to go with the flow and can get panicked and anxious if the baby wont sleep when she’s supposed to or feed when I think she should. I love my routine and I need the safe predictability of knowing what’s next. I envy those mothers who seem to instinctively know how to mother; it really doesn’t come easily for me. I honestly spend all my mothers’ group catch-ups watching other mothers interact with their children, so when I go home I can try it out with my kids. I also have a predisposition to post-natal depression and anxiety.

Having a diagnosis of autism was a relief for me. It allowed me some freedom and allowed me some room under my stifling mask to breathe. It was the beginning of a celebration. Not all people with autism are savants, act like Rain Man, can fix your computer or have language delays. Some of us just struggle with the little things in life. If someone you know tells you they think they may have autism, don’t be dismissive. If they are like me, it took a lot of courage to own it enough to say it out loud and make it real.

It’s hard to describe the things that make me different from your average woman, wife, mother, professional. The older and wiser I get, the more confident I grow in my own skin, the more I’m letting my quirks show. I want to be the best possible role model for my children, and for me that means celebrating my unique Aspie quirks, the good and the challenging.

My name is Cass. I don’t like peas because they roll and touch the other food on my plate, my tea must be made at the exact moment the water boils, I can’t sleep with the wardrobe door ajar, I hate how my husband squeezes toothpaste from the top of the tube and I rub my feet together to soothe myself when I’m stressed (I’m doing it right now)… and I have high-functioning autism spectrum disorder.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about your disability or disease. How did you react, and what do you want to tell people who hold his misconception? 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.

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A Letter to Parents of Children With Autism, From an Autistic Adult

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Dear parents of children on the autism spectrum,

I’m an adult who was diagnosed on the autism spectrum, and I’m one of the many autistic adults who would love to help you understand your children, if you will let us. There’s a lot of emotion surrounding autism and parenting in general, and I will be the first to admit I don’t have the perspective of a parent. But I do have the perspective of growing up as the weird kid who’s having a lot of difficulty with ordinary things.

I do a lot of reading both in the autistic community and parenting communities. I see a lot of vehemence from some of you about us not being like your children and often a rejection when we offer advice. I feel this is partly due to said advice being offered in a way that causes parents to feel attacked, as though their worthiness as a parent is under the microscope. Sometimes this is the case, as autistic adults can have a lot of built-up hurt from a lifetime of being treated in awful ways for their differences; it can leak out over emotional topics. Often it can be a matter of incorrect tone in conversation because autistic people can be blunt and we have trouble modulating this. However it may seem from the outside, we’re motivated to want the best for autistic children because they’re a part of our tribe, and how you treat autistic adults today is how your children will be treated by society in the future.

A drawing by the author, Andrea Michael

A common argument put forth to negate our input is that because we can communicate in ways you understand, we’re “high-functioning” and not worth listening to because our experience is so very different from your child’s experience.

I was diagnosed with Asperger’s syndrome (or ASD level 1 in the new DSM criteria). I had no speech delay, I was hyperlexic as a child, exceptionally bright in school and I’ve been identified as having a savant skill in art. However, even now as an adult there are things I struggle with — so much so that I can be considered “low-functioning” in those areas and rely on support to manage them.

Autism is such a mixed bag of strengths and weaknesses; each one of us is completely unique in the various functions that have been affected and challenges we face. If fate had cast the dice and my brain had wired slightly differently, my speech and various bodily processes may have been included in those lower-functioning areas.

Despite our varying abilities to pass as “normal” at a cursory glance, there are many areas in which we experience similarities to your children, and that facade of normalcy was hard won over our lifetime and breaks down easily. To maintain it can be an effort of monumental proportions that take up a lot of energy, often leading to mental health problems over time, as it has with me.

Please believe me when I say I understand many of your child’s difficulties. I have insight on the meltdowns and shutdowns, the self harm, stimming, aversions to touch and eye contact. I understand how they feel when nothing is making sense and everything is fear and anxiety. I know what it’s like living with sensory problems that can take away every coping mechanism I have in the blink of an eye. I understand being swept up in obsessive focus on topics/objects. I know the terror of feeling like social interaction will never make sense no matter how hard I try. I understand having emotions so intense that I can’t express them no matter how much I want to so I appear to lack empathy. I know what it’s like to miss the signs of someone feeling bad or angry and accidentally cause them more upset. I know how it feels to have a body that doesn’t work quite right with a lifetime of digestive problems. I understand the heartache of seeing family members struggling and hurting because I’m different.

Some parents wonder if their autistic kids love them because we often don’t show it in ways they understand, and for most of us the answer is a resounding “yes!” — with everything that we have in whatever ways our various abilities will let us. There are so many areas where parents are led to believe one thing, but we may feel entirely differently, and it breaks my heart to see parents and autistic people at odds when we both want the same thing. Yes, some of our views are confronting, but please at least think about them and try to understand why we may feel the way we do. Please let us help you in understanding your children — there’s a large community online of autistic adults from all parts of the spectrum out there who are articulate about their experiences, including those who are nonverbal who have found their voice through writing. A quick search for “autistic adult blogs” should start you on your journey.

Read our blogs, talk to us, let us in — we want acceptance, and we want to help you and your children.

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