mother and child holding umbrellas, walking on a path in the park

Dearest H,

I am writing this letter to tell you how truly grateful I am that you are my son and how you have changed me as a person. When I first saw your little face over the surgical curtain, I was bursting with pride and happiness. When you were about 8 months old, I noticed you were different from the other babies. As you got older, you seemed unhappy and frustrated, and you found it difficult to tell me what you wanted. I didn’t understand how you perceived the world.

Over time with support, we learned how to communicate with each other, and you were joyful. I will never forget your first word. You were in the bath playing, and I was squirting water at you and saying, “Ready, steady…” and you said, “Go!” I was so elated and felt like I had won the lottery. You were laughing and joining in the game.

Getting your diagnosis didn’t change anything, as I had already started to adapt my parenting to help you develop. I quickly realized attending a mainstream preschool seemed to make you unhappy. You started attending a school that focused on children with needs similar to yours. You enjoyed your first day and still never look back or get upset when you are dropped off.

I was so excited getting ready for your first sports day. I made sure my phone was fully charged so I could take lots of pictures of you. The first race was the egg and spoon. You did a fantastic job and enjoyed the running. You didn’t want to give the egg up at the end and started playing with it and throwing it around the playground. This made me laugh. As the next races were called, I tried to encourage you to join in by picking you up and taking you to the line to wait for your turn. You became upset and ran off every time. You were having a great time away from the other children playing with your egg, running around and going on the slide. I felt deflated and a bit disappointed because I wanted you to join in and enjoy your first sports day. Writing that has made me upset and guilty I ever felt this way.

Later on, I looked through the pictures I took and had an epiphany. It was like a light had been switched on and another door had been opened. I realized I had experienced those feelings because of my own expectations. You didn’t like lining up and waiting or joining in with the other children, so you didn’t want to do those things. I realized I need to focus on the positives — a picture of you on the slide with the biggest grin on your face.

You make me laugh, smile and cry with excitement. You surprise me every day, and I can’t tell you how proud I am of everything you achieve. You have taught me a lot about myself and have made me a better Mummy and a better person. I know we might have challenges to overcome in the future, but we will do it together. H, you light up my life and make me whole. Thank you for being my little boy!

Love you to the stars and back,
Mummy

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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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“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.

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Follow this journey on Anonymously 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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