mother daughter and firefighter in front of fire truck

To the Firefighter Who Sang to My Autistic Daughter

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To the firefighter who sang to my autistic daughter,

You have put in thousands of hours training to become a firefighter. You physically train so you’re capable of saving people from a variety of life-threatening situations, and you are also capable of providing medical support under unimaginable levels of stress to keep those people alive until they arrive at the hospital. Your dedication, training and study saves lives.

Last Tuesday around 8:20 a.m., you arrived at the horrific scene of my mangled car. I had lost control, ran off the road, over-corrected and crossed two lanes of traffic. The last thing I remember was thinking, “Oh, sh*t. I’m about to wreck,” before hitting a huge tree going about 60 MPH.

They told me I hit four trees and a mailbox, but my memory gets hazy right before I ran off the road. The next thing I recall is some man standing beside my open door, holding something against my bleeding head and telling me I was OK. Things get a little fuzzy again, and then I remember paramedics sliding me out of my car and onto a backboard.

I had a deep gash, about two and a half inches long, across the back of my head, and blood seemed to just pour out of it. My entire right hand was ripped to shreds, and every inch of my body felt a type of pain that no human being should ever have to endure. But none of that mattered. All I cared about was my baby girl, who was sitting in the backseat. I heard her crying, so I knew she was alive, but that was all I knew.

All of you were asking me tons of questions, sticking IVs in my arms, cutting off my clothes, and trying to control all the bleeding. But all I could think about was my daughter Raelyn. I kept repeating over and over, “She’s autistic. She can’t talk. She can’t show you where she hurts. She’s gonna be so scared. Please get my husband or my mom here so they can hold her. Please just get someone here.”

We had to get to the hospital, so we couldn’t wait around for someone to get there. My sweet baby was probably terrified, and there wasn’t a damn thing I could do about it. She was being held by you, a complete stranger, while her mommy was covered in blood, strapped down to a backboard.

You know that sinking feeling you sometimes get in your gut?

young girl at the hospital

Well, every time I heard her cry the way she only cries when she’s terrified, that feeling came rushing back. It is still too fresh to bear. You were holding her and trying everything you could to calm her down. Nothing was working, so you asked me what calms her down. Then I made one of the strangest requests you have probably ever received. I asked you,

“Will you please sing ‘Wheels on the Bus’ to her?”

So you did. For the entire 20-minute drive. And she stayed relatively calm. I believe you were an angel in the flesh who was sent to us for a reason. You are the reason I was able to keep breathing. Knowing my child was safe and not in pain allowed me to take another breath.

Every minute that went by without hearing her cry was another minute I was relatively at ease. I knew my body would eventually heal and the physical pain would fade. But there’s that type of pain I believe only a parent can understand: the pain you feel when your baby is scared or hurt. That hurt me so much more than hitting that tree head on. Each time she cried, I physically couldn’t breathe. I wanted to just hold her and tell her it was OK, but I couldn’t. I was completely incapacitated, strapped down to that backboard, while I relied on you to comfort my kid.

Well, you did the unthinkable.

You managed to keep a mom from completely losing her sh*t while her daughter was terrified. As a nurse, I know when you perform a medical procedure for the first time, you’re nervous as hell and praying your patient doesn’t sense your fear. You put on your game face and hope to hell you don’t screw up. I don’t know if you have children, but if you don’t, you damn sure fooled me that day. I had complete faith in you taking care of my baby.

You didn’t have to sing to her in the back of that ambulance. If you hadn’t, she probably would have been fine. But I wouldn’t have been. People talk about PTSD after a car accident, but the sound of crushing metal and the smell of the air bags after they’ve deployed are not what keeps me up at night. The thought of how scared she must have been the moment she realized we were about to wreck is what haunts me. Aside from not wrecking, there was nothing I could have done to comfort her during what is probably the scariest moment of her life. But once you got there, you made it your mission to make her (and me) believe that everything was OK.

So thank you for going above and beyond what you’re trained to do for your job. Thank you for giving me those brief moments of hope while she was content and quiet. By keeping her calm, you kept me sane (relatively). You made the most traumatic experience of my life sting a little bit less. Our car wreck was just another day on the job for you, but you left a lasting impression on me, and I will never forget what you did for us that day.

Your biggest fans,

Summer and Raelyn

mother holding her giggling daughter

Images via Contributor.

Follow this journey on Autism Through Raelyn’s Eyes.

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When People Say I'm 'Obsessed' With My Autism

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“You’re obsessed with your autism. Ever since your diagnosis, you talk about it all the time. You never spoke about these problems before.”

Keep in mind, none of these people know about my blog. Imagine how “obsessed” they might think I was if they knew I had an autism blog and contribute to a popular disability website.

I want to help. People should not have to struggle in silence.

I never know what to say in face-to-face conversations with friends and loved ones who doubt. Finally, after years of struggling in silence, I am talking — speaking up and trying to speak out. Face-to-face, my words have a hard time finding their way out.

My entire life, I was “sick.” Doctors could not find anything physically wrong with me. They told my mother it was all in my head and I needed to toughen up.

Finally, I have an answer — the truth, and it feels liberating.

As a child, I was tired of being looked at like I was “crazy” and told I complained too much — so I stopped complaining. Nobody believed me anyway. Just because I stopped talking about my discomfort does not mean it went away.

I still lived with constant headaches, nausea and even physical pain — the more severe symptoms of my sensory processing disorder. Before, I would endure, pretending everything was alright, smiling through the pain.

“You used to be such a positive person.”

It seems now that I advocate for myself and speak up when I am uncomfortable or not feeling well, I am a “negative person.”

Why does this stigma still exist? I’m not trying to be negative, I’m sharing my world with you or asking for help. But it seems to me few people want to know how I am really feeling.

People have accused me of using my diagnosis to get out of things, but really the things I try to get away from now are things that have caused me pain my entire life.

In my experience, people can be downright nasty when I try to paint autism in a positive light. They seem to feel as if I am dismissing the struggle, but I feel like there is already enough information on the internet talking about all the challenges associated with autism. If you don’t know where to look, that can be all you’ll find.

To me, my diagnosis is a little paper that says, “You’re not ‘crazy.’ Yes, your body does have a mind of its own. Love yourself.” I chose not to get hung up on the negative and try to always focus on the positive. “Anna is an exceptionally bright woman on the autism spectrum. She struggles with [. . .] ” Let’s not worry about the list that comes next. I can’t live my life drowning in negativity.

I’m not a special snowflake. I am just a girl trying to live an authentic life while loving and accepting herself — autism and all.

To those who think I’m “obsessed”:

I know you may not understand my “obsession.” You may think I am overthinking my diagnosis and believe I am letting it define me.

I am not my diagnosis. It does not define me — it explains me, and answers all of my questions. The secrets I’ve kept my entire life.

Now that I know the truth, I’m not ashamed anymore. I’ve never felt more free and alive. I wish you could understand that, for me, finally knowing the truth has been life-changing.

Image via Thinkstock.

Follow this journey on Anonymously Autistic.

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When People Tell Me I 'Can't Be Autistic'

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A powerful hashtag (#SheCantBeAutistic) has been blowing up on Twitter lately, bringing attention to an issue I’ve been talking about a lot recently.

I was not diagnosed until I was 30 years old because people thought #SheCantBeAutistic.

They were wrong. I am autistic, and I spent too many years waiting to find that out.

Below are just a few of the reasons I’ve been told I “can’t be Autistic.”

#SheCantBeAutistic – she has a great job.

#SheCantBeAutistic – she pays her bills on time.

#SheCantBeAutistic – she works full-time.

#SheCantBeAutistic – she has a husband.

#SheCantBeAutistic – she has pets.

#SheCantBeAutistic – she is too smart.

#SheCantBeAutistic – she wears makeup.

#SheCantBeAutistic – she is very talkative.

#SheCantBeAutistic – her imagination is really good.

#SheCantBeAutistic – she has feelings.

#SheCantBeAutistic – she knows how to read and write.

#SheCantBeAutistic – she is successful in life.

#SheCantBeAutistic – she seems happy and warm.

People make assumptions and use stereotypes to make snap decisions about people. Autistic people are all individuals (just like non-autistic people are all individuals). I fight these stigmas every day when the way I present myself does not match what other people expect of me.

These assumptions are part of the reason so many autistic women go undiagnosed. We go our entire lives feeling different but not knowing why. We grow up believing the stereotypes we hear about autism and don’t ever think we fit that description.

Then one day we hear an autistic person’s point of view — like a lightning bolt, something stirs. There it is, the truth breaking through all the assumptions.

I wish the truth didn’t have so many obstacles, so people could just accept autistic people as they are without assuming how they should be. We are not cookie-cutter people. Every single one of us is an individual. 

Follow this journey on Anonymously Autistic.

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Image via Thinkstock

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Planning a Trip to Disney World With My Child on the Autism Spectrum

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Recently, our older daughter, Kendall, kept begging us to take a trip to Disney World. We believed as a family with a child on the autism spectrum, Disney World would be too much of a challenge. Oftentimes our vacations are simple family trips without any large-scale plans. In the past, when there has been too much unscheduled time on vacations, it became stressful for our son Gavin, who is on the autism spectrum. It resulted in meltdowns and a one- to two-week turnaround to get Gavin back on his regular schedule when we returned home. Nonetheless, we knew Kendall’s patience was fading. The idea of taking a vacation without Gavin left me devastated, but consistently telling Kendall her brother wasn’t ready didn’t leave me feeling any better. So we made the decision we would travel as a family of four to Disney World and work on any challenges that might arise.

I was feeling a lot of stress about the trip, and talking to everyone else about their trips to Disney World left me feeling even more anxious. Prior to going to Disney World, we received a lot of “good luck” comments from friends and family members. They quickly followed the remarks with statements about how we would need a vacation from our vacation when we returned. Many offered how busy Disney World could feel and shared with us that we would probably feel over-scheduled. My fears about this trip started to increase with every passing conversation. We had already struggled to enjoy a family trip in the past, and this was a lot of money to throw at something that might be an even worse experience for Gavin.

Luckily, this was not the case for us. In reality, all of the active schedules and plans made our trip easier. Gavin understands schedules; he thrives on them. I had convinced myself it would be a stressful trip, but it turned out to be magical. Disney World gave us the vacation we had been wanting for three years. Disney World gave me the first opportunity to sit back and watch my children smile, laugh, and stare off in amazement as they interacted with various characters and attractions at the parks.

When left to his own decision-making for activities, Gavin often struggles with the many different options. Disney World’s schedules and plethora of online information allowed us to preview everything for him so he had an idea going into the trip of what to expect. Disney World provided everything we needed as a special needs family to give Gavin an enjoyable vacation. He woke up every day with a schedule of what we were going to be doing and had to show little flexibility or decision-making throughout the day. When we encountered a line not worth waiting in, we used “this then that” language that he was familiar with from his classwork, and it helped the majority of the time. None of us felt over-planned. For once, I felt relaxed. We were all finally enjoying a family vacation.

If your family has a child on the autism spectrum and you are considering a trip to Disney World, I would also encourage you to look at the Disability Access Service (DAS) plan. This plan allows guests with disabilities at the Walt Disney World Resorts to receive a return time for attractions based on the current wait time. Disability Access Services can be accessed by visiting guest relations at any of the four parks. For more information regarding Disney’s disability services, click here.

family riding small world ride at disney world

Images via Contributor.

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Why I Play an Autism-Friendly Santa and Penguin During the Holidays

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The holiday season is one of my favorite times of the year. When I was growing up on the autism spectrum, music became a form of therapy for me. This started with Broadway tunes but then also with an absolute love of Christmas music. “Silent Night,” “Jingle Bells” and so many more classics made me fall in love with the holiday season. As I got older, between listening to Michael Buble’s Christmas album, watching the movie “Elf” or just spending time with the family, I truly was able to fall in love with every moment I’d have during the season.

As someone who has overcome many of his challenges on the autism spectrum, I try to give back to our community as much as I can. This started several years ago by mentoring teens with autism and other special needs. I never had a positive role model I could look up to growing up. This made me want to support the future generations of kids by being a mentor to them during their development.

While this has been a life-changing experience, once thing I noticed was that there had to be some way I could connect to the larger special needs community. That’s when the idea came about to help children on the spectrum. Now every year I dress up as Santa Claus to give children with autism a chance to meet the big guy in a sensory-friendly setting. We have sponsors donate to have the kids come free of charge, and any proceeds from the event go to a college scholarship fund for students with autism.

Each kid I meet has my complete attention for those few minutes. Each one of them has their own story, and every time I interact with them, I try to meet them where they are. Whether it’s me sitting on the ground playing with toys with them or keeping my distance if they want or need space, I’m here for them to have an amazing holiday event.

This event led me to get more involved in other events in my hometown. An autism school I’ve spoken at in the past has a holiday breakfast each year, and now I go to volunteer as an autism-friendly penguin to hand out toys to the kids.

No matter where our journey takes us next with these events during the holidays, I can only hope our community will continue to find ways to volunteer and give back to others. Volunteering and getting involved is one of the best ways you can support us not only during the holidays but all year round.

Wishing you all happy holidays!
Kerry, the Autism-Friendly Santa and Penguin

You can learn more about our Autism-Friendly Santa event for this year here.

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

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