To the Mom Who Was Right About Your Child’s Autism Diagnosis

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Dear Elizabeth,

Well, you were right — it was an autism spectrum diagnosis.

You know what else you were right about? That everything is going to be OK; that this is the first step on a path that is going to good places for your son; and that the struggles he has experienced were neither your fault nor his.

The lightness you feel? That is the weight of guilt and worry off your shoulders.

There is more, too. Once you and your husband figure out what your son, the Navigator, needs, you are going to work as a better team than you ever have.

There will be curveballs. That job you love? You will quit it; you love your son more. Those plans you made? You will put them on hold or even make new ones, some of them better and more fulfilling ones.

Yes, there will be a sense of loss, but really only the sense of loss that comes with the learning curve of taking on new challenges — losing the feeling that you knew what you were doing and the comfort of the rote.

Honestly, though, how was thinking you knew what you were doing really working for you? Not so well. With this re-learning, things will work better.

But not perfectly — don’t expect a diagnosis to solve everything. It won’t. There will still be challenges, difficult ones that will last for years. There will be things you will have to let go of as you accept who he is.

There will be fights you will fight for him — and you will find you will be more able to fight for him than anything you’ve fought for.

You will gain important new perspectives and make friends you have never met. You will broaden your compassion and understanding.

Your life will become rich and full in a way you never dreamed, much different than you ever imagined. For now, take it one day at a time. Things will be a little chaotic until you settle into the new reality.

Be kind to your husband, your son and yourself. Be patient with family who may be confused or dismayed by the diagnosis — they will come around and be supportive.

You will feel like you need to learn everything at once. Do the best you can and follow the school’s lead. They have a lot of knowledge and will guide you as they work with your son.

Because you were right: everything is going to be OK.

Love,
Me

Follow this journey on Autism Mom.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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

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To the 12-Year-Old Reading Her Autism Diagnosis

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A letter to myself, as I learned who I was.

Hello, Abby!

I know you are feeling scared right now, but believe me, you are going to be OK. I know you just found out we have autism. It’s probably scary. But we are going to make it.

Right now, you probably don’t even know what this means. You’ll go home and research it. I would say not to, but it won’t stop you so, don’t take in too much. The information you read is an overview of autistic people. It is not who you are. You don’t have to try to fit or mold yourself into a box or shape you don’t feel like you fit into.

I’m not going to say people aren’t going to push you, because they will. They always will. People don’t understand that you may not want to fit yourself into their molds. They want you to want to be the same as them. Even now, as I sit here, I have read and heard several things in the last few days about how we need to cure autism, and it just makes me pause and thing, why? And I know that is how you feel right now. Why is this happening to you. Why can’t you be normal, as you always fought to pass as. As you push your tears away to allow yourself to keep up the mask that keeps you hidden from them, their eyes sliding through you like you aren’t even there. As if you are just part of the illusion they see every day.

And I know you make yourself part of that illusion. You hide yourself in their taunts and whispers so you can look as “normal” as possible. You don’t have to do that. And yes, I know you aren’t going to listen to me, because what 12-year-old listens to anyone? But hey, might as well try.

I have one more thing to tell you. Your parents, our parents, are not exactly going to be able to give you the support you need. They try, they do. But they aren’t going to understand you very well. Nobody is. You are going to have friends who drift away, who can’t understand who you are, and yeah, it’s going to hurt. And what people call you is going to hurt. I know you don’t understand why they are cruel to you. I know you don’t know how to make it stop. And I still don’t know. Because the human species is confusing. People are hard to read, and they change so constantly that it is difficult to keep up. And it hurts.

You’re going to feel like everything in the world is painful for you. And it might just be. But it’s not forever. You are going to be OK. I promise.

Sincerely,
Who we are now

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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

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Why I’m Thanking Taylor Swift as a Mom of Sons With Special Needs

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Dear Taylor Swift,

It has been nearly two decades since I took pen in hand (figuratively) to write to a celebrity. Then, it was an up-and-coming boy band from Florida that was performing at the Mark of the Quad Cities. I, the generous manager of a men’s clothing store, wrote the five boys to let them know I understood how hard it was to go shopping now that they were famous. I kindly offered to come into work before or after the mall opened to allow them to shop without being swarmed by fans. They never showed. I expect similar results here.

So why am I, an almost 40-year-old adult, behaving the way an 8-year-old girl might? Because I need to say thank you. I’m not going to thank you for the things I’m sure other people thank you for. I do constantly see online how great you are at recognizing your fans, like this and this or even this.

I don’t have a daughter, so I’m not going to thank you for being a seemingly good role model. Let’s be honest, I’ve got serious #squadgoals because of you. That’s right, isn’t it? I’m almost 40, so I’m not hip to the lingo. None of these are the reasons I am writing to thank you.

Several years ago, I had two children who had difficulty with speech. One was delayed and unable to engage in conversations, and the other was eventually diagnosed as nonverbal and with autism. It was, and can still be, emotionally overwhelming at times. And yes, your music can be the perfect pop antidote, but it’s still not the reason I want to thank you.

My oldest, Brady, entered preschool unable to form sentences. He had speech therapy, occupational therapy and physical therapy. We saw little improvement for many months. The therapists talked about taking him to be tested for autism. And then “Love Story” began to flood the airwaves, constantly played on the radio and on VH1. And it became Brady’s favorite song, being requested on a constant loop most days.

And then, he started singing it. He grabbed the keyboard he had gotten for Christmas and he sang along — not just words, but sentences. He knew all the words to the song, words I didn’t even know, and he sang them. Our jaws dropped.

Each song released from that album elicited the same results. Eventually, the keyboard was replaced by a plastic guitar, and we watched VH1 constantly in hopes of catching one of your videos in order to DVR it, which we were then requested to watch over and over.

Soon after, speech blossomed and kept blossoming. Now, six years later, my husband and I are generally exhausted at the end of the day from the constant chatter that fills our household.

My second son, now 8, has autism and doesn’t speak, so I don’t have stories of how your music inspired him to sing along… yet. However, I can thank you for what your music has done for him as well. Autism brings its own sensory challenges, and in particular, cutting his hair can be extremely difficult. We’ve cut his hair at home for the last several years, and every month, it’s a challenge. The only beacon of hope comes when we turn on YouTube and allow him to watch music videos during the cut. He gets distracted, and for a moment, it’s not so hard. Your music in particular draws his attention away from our task and quiets him, if only for a few minutes.

bobblehead of nsync member next to framed photo of two boys
A photograph of Kelly’s two sons.

So there you go, Taylor Swift. I am thankful for you and your music because of what it has done for my children. And if by some very small chance, you actually read this, I hope you keep providing the perfect soundtrack for my family — and for our Friday night dance parties, even if the 10-year-old won’t admit to participating in them.

P.S. That group that I wrote to in the 1990s? It was *NSYNC. I understand you, too, are a fan.

A version of this story first appeared on Quad City Moms Blog.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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.

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Why It’s Hard to Meet New People When You Have Autism

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Sometimes meeting new people can be hard, and this is especially true if you have autism, but why? In the video below, I talk about my own experience with this.

If you have any ideas about videos or subjects you’d like me to do, send me an email at [email protected]

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How Watching Basketball Puts Me at Ease as a Person on the Autism Spectrum

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Lately (read: the last several months), I have felt stuck in my head. I have a lot I want to say, but I can’t make the words come out. With #AutismHoops coming up, I wanted to write about why basketball matters to me as an individual on the autism spectrum. I think this event provides an opportunity to raise awareness in front of a unique population, and hopefully, generate acceptance for all individuals on the autism spectrum.

There are very few things in which I feel completely at ease. Watching basketball is one. I’m so thankful for that. It wasn’t always that way. Playing basketball didn’t put me at ease like watching basketball did. I enjoyed playing, when my knee allowed it.

But I flourished when I got to watch it. When my college basketball team started using Internet film exchange and I got that password… man. I loved it. I’d watch games instead of doing homework. I’d watch games before bed, when I couldn’t sleep, when I was so anxious I would vomit, when I couldn’t make my brain be quiet. When I watched basketball, I felt right.

The autistic mind works differently than most. Some people refer to certain forms of autism as “Wrong Planet Syndrome,” and I feel that way very often. But when I’m watching basketball, I know I’m exactly where I’m supposed to be.

I have a difficult time imagining myself later in life. I always have. I never thought I’d have a career. I thought I would always live at home and work for my parents. I wasn’t hopeful. When I applied and was accepted to the So You Want To Be A Coach program, I was terrified. I would get physically sick at the thought of having to introduce myself to another speaker. Our mentor approached me and said she was worried about me. When I took a graduate assistant position, people said I should reconsider. That I would never make it in this profession. I would never be able to connect or network.

When I found my niche, I stopped listening and I started hoping. Basketball gives me a purpose. It allows my brain to thrive by providing a mental challenge. My brain loves patterns. I love that patterns give a sense of routine and are a reliable means of prediction. I think that’s why I’m good at my job as a video coordinator. I get paid to watch basketball and find the patterns, to predict what is going to happen. And I’m good at it.

People ask me questions and want to know what I think. Me. I can’t look you in the eye. I can’t stand for you to touch me. I hate the noisy arenas — the bands, the crowds, the horns, the whistles. These are all really important parts of basketball. Somehow, for me, it works. I don’t have to network or connect anymore. I just have to be me and do what I love.

So when you see coaches wearing their blue puzzle pieces, don’t think about the limits that autism imposes on individuals. Don’t think about the “can’t” or the “won’t.” I’ve felt the despair that comes with not being able to imagine a successful future for myself. Some days, I feel it still.

When the world says, “Give up,” hope whispers, “Try it one more time.”

Instead, change your perception, and change your definition of success. I hope you will not give up. I hope you find your basketball.

Women's basketball team in a gymnasium

Follow this journey on Erinmmckinney.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, 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 Submit a Story page for more about our submission guidelines.

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Today, I Gave You Your Child’s Autism Diagnosis

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I was once you. I once sat on the couch while a psychologist told me my son, on whom the sun rose and set, had autism. I don’t remember any of the words said to me after that — but I remember the room, where the sun was in the sky, and my desire to run from the clinic as fast as I could so I could be alone.

I was completing my doctorate at the time, working in a children’s clinic in another state, away from my family and friends. It wasn’t like I didn’t know what I was looking at. I knew all the signs. I had to know them in order to appropriately diagnose other parents’ children correctly. Day after day, I lied to myself – “He’s just smart” or “He’s unique,” I would say. Suddenly though, I had no story to tell myself. My explanations fell flat in the face of him cowering under the kindergarten table, hoodie over his face, screaming, “Don’t look at me!” I could not explain the word-for-word infomercials he scripted when anxious, or the inexplicable meltdowns where I found myself restraining him so he wouldn’t hurt himself. I wanted to hold him, rock him, soothe him — but he didn’t want to be touched. The confidence I felt at work dissolved when I couldn’t reach my own child.

Don’t get me wrong. It was always hard to deliver painful diagnoses to parents. I was empathic, sensitive and supportive, and I wanted nothing more than to truly help the families I served. But something fundamental changed in me that day — I got it. I understood on a level I never before knew existed. Autism wasn’t known by words in a textbook, it was how it felt in a relationship. The first autism diagnosis I gave after that was the mother — not the doctor — holding back tears, helpless in the face of my own emotions. In my defense, the diagnosis of my precious boy was handed to me as though it were a terminal illness, with all the hopelessness such a pronouncement would bring.

Thus began my own journey — the journey I have been honored to begin with hundreds of the most amazing individuals to ever cross my threshold. I immersed myself in the world of autism, not wanting to only know but to truly understand. I humbly accepted that I didn’t and would never have all the answers to something so complex, but I was committed to seeking what just might work for any child, adolescent, or adult. I found the brilliance of hope in the courage of my people, my “village,” and I discovered that the simple joys of having a child invited to a birthday party, developing a friendship, going to a dance, having a boss, a partner, a child were all possible. The search for the ability to experience joy and peace were far more meaningful than any superficial accolades.

That brings me to today. Today, when you sit across from me, holding your breath, wanting to know the truth while wishing you could be somewhere else. I have administered every test and measure necessary so that I, to the best of my ability, understand your child, your family, your dreams, your fears — there’s no room for cookie-cutter assessments here. I am not the person I was all those years ago. Autism doesn’t frighten me anymore; rather, I embrace the absolute treasure found in every person with autism.

But there you are. I see you — I feel what you’re feeling. I have grown to know you through this process and to understand your vulnerabilities, your unwavering love for and acceptance of your little one. You feel alone and beat yourself up for not always knowing what to do, for waiting too long, for your imperfections. I won’t lie, I want to jump in and rescue you, say, “Let’s wait a year and re-evaluate.” If I do that, I am hurting you, delaying the process you are going to have to go through. I’m going to tell you the truth. And then, if you let me, I will be honored to walk beside you on this road — yours and mine — and share your journey.

Our children with autism can teach us the greatest lessons. Someday, I hope you will tell your story to another parent, about the day you sat where they are sitting, and all you have learned on this journey.

Lori Lichte-Brill
Lori and her son.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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.

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