I’ve known autism now for over 20 years, and saying it’s been an emotional rollercoaster does not do justice. You have to live through it to understand the ride.

My most vivid and earliest childhood memory was being in a doctor’s office (light blue walls, big brown desk, white coat), which I later realized was where my brother was diagnosed. Then I remember my mom holding my brother in his arms, and my dad holding my mom while walking down the black, metal staircase. I think I was walking alone on the steps, but not too far away.

And that’s how I’ve felt for so long — I always felt like I was trying to walking solo, on my own path, but not too far away from my family. I became a second mother, a third parent to my brother. Little did I know, there were many others on this similar path; it took me over 10 years to find my first “Sibs-friends.” And — I hope I am able to speak on their behalf — we all feel the same way: it’s tough, but we love our siblings just the way they are. We acknowledge that we wouldn’t be who we are today if it weren’t for autism.

brother with autism the mighty

So I will wrap this up with tears of mixed emotions and a letter that I wish my brother could understand, not today, but maybe in the future:

To my dear brother,

Your world of autism seems so simple. You live day by day to fulfill the little joys you need (expected favorite meals, favorite toys, scheduled events) and have so much love and care around you. Yet, you struggle with your lack of independence and the looming presence of seizures each day.

I’ve watched you grow, and it was not easy. From the days you would throw tantrums in our favorite arcade to when you first discovered puberty and seizures, to our first time alone for an extended period without parents… I’ve been there. I’ve been there to play with you, cook your meals and brush your teeth.

Because of your autism, I am a product of arrested development, discovered bits of parenting before I turned double-digits in age, and a constant worrier. It affects me in ways that I have yet been able to describe completely.

Yet, thanks to your autism, I am who I am today. I discovered a career that I am passionate about, and have met wonderful people who are just as understanding as I am about the importance of communication. Because of your struggles to tell our family about your interests, your daily memories and your immediate needs, I wanted to help ease that pain for other families.

I am a person who will give a piece of her heart to everyone who needs it, and let my love and care bleed out until I have nothing left for me. For better or for worse.

And for that, I am forever grateful. I believe in things happening for a reason,  mainly because of you, my sweet brother. Thank you, “Brat,” from the bottom of my heart. Thank you, autism, for the tough moments and the blessings.

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Billy Mann is the music producer behind your favorite songs. (Really.) But we’re not talking about what he’s doing for the face of music right now.

For Mann, the richness of life comes from so many things that aren’t about a hit song. As a father of four, Mann and his wife Gena have been actively involved in the autism community and raising awareness for the ABLE Act. Mann is a modern-day advocate in every sense of the word. Aside from taking part in big, important meetings on the Hill, he takes to Twitter to throw gems out into the Twitterverse and start important conversations.

Amid a busy start to Autism Awareness month, Mann recently answered three questions for The Mighty.

1. How has being a husband/father/artist/executive made you the advocate for autism awareness you are today? 

Having a child with special needs has made me a dad with special skills, and one is being inspired by my son to take action. He’s so brave and noble in his silence. Most people with typical kids don’t realize that it can take some children with autism years to learn to go to the bathroom by themselves, to use a fork, to hold a pencil. Most people don’t realize that when they see my son and they ask him how he’s doing, after 10 years of not responding, teaching, nurturing and therapy, now he says, “good” back to them. And being a coast-based creative executive out of New York where everyone is so important, in a rush, so special and almost-famous, I’ve learned to remember that everyone I meet has a story I don’t know about. The taxi driver. The doorman. The guy folding a straw over and over again while waiting in line at Starbucks… My son has made my listening and perception skills stronger and grown my compassion and sensitivity. But when I look at the fast increase in diagnosis, the NIH and CDC government numbers and studies and the impact autism can have on families and school districts, I cannot not act.  

2. How do you see media raising awareness for autism? 

In reality, the increase in media coverage of autism is a reflection of society, as it should be. Autism spectrum disorders have increased in the U.S. While the autism community is a diverse spectrum, the need for awareness, services, advocacy, resources to soften the harsh economic impact on school districts, local, state and federal governments, applies to everyone equally. Raising awareness is the first step towards right-sizing resources and inspiring understanding and acceptance.   

3. What are some defining characteristics of a modern day advocate? Have you seen social media make a difference?

I think that advocating in the social media world means seeing cyberspace as a kind of “Hyde Park” moment at all times. There are so many critical causes and needs and missions out there, and even while I’m focused on autism, I know in Hyde Park there are a lot of us at once. I’ve learned over the years to not just tweet my thoughts but also retweet and favorite and encourage others whose feelings and thoughts align with mine. Sort of like when James Brown screamed, “Yeah!” and then his whole band and the audience echoed back, “YEAH!” I think people who share causes are best when we grow the community through reaffirmation and positivity. 

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Sometimes it takes kids like the ones who attend Huron High to restore a little bit of faith in the world. My brother, now attending high school, almost to the final stretch as a senior, has been part of a perfect example of this faith in humanity.

Growing up, you get to observe the way children interact with others who come across as “different.” I for one have experienced the taunting and teasing that comes with this disability. And when I say “disability,” what I really mean is “blessing.” Because that’s exactly what my brother with Down syndrome is: a blessing.

Max is an outgoing, lovable, companionable kid who grew up without judgment or bias toward anyone. His innocent mind made him all the more willing to approach anyone and everyone with a friendly gesture (usually by saying howdy).

Some children may have taken his extrovert personality the wrong way at times. Peers would recognize his physical differences and stare as if they were trying to figure out what was wrong. Some would take advantage of his innocence and tease him because they knew he would never tease back. The truth is, nothing was wrong with him and his heart of gold simply wasn’t capable of being rude to another peer.

Since then, Max and the children he grew up with have come a long way. The friends he has made over the years have only lifted him higher and encouraged him to be the best he can be. Max is a manager of the high school football team, jersey and all. The team has been incredible with making him feel at home and that he is of significant importance to the team as a whole.

He is also a manager of the middle school basketball team. Although these players are years younger than him, they know him just as well as those of his own age and make him feel like an essential part of the team.

Max competes in Winter Special Olympics skiing and has received gold medals over the past three years.

There is no way he would have reached his goal of this many medals if his best friends and classmates weren’t right there cheering on the sidelines each year.

Max was also nominated and chosen to be the Grand Marshal of our town’s local parade this past summer. Not only did his peers think this was a good idea, but the entire town.

Did I mention he is going to be a senior in high school? The only senior with Down syndrome to ever graduate from Huron High. There is no doubt in my mind he wouldn’t be where he is right now if his peers weren’t always right behind him pushing him to be the best he can be.

All of these people have made my brother feel so incredibly special through everyday actions. The way Max’s classmates have come together to support him has me at a loss for words.

I watch him interact in a more social way than he ever has before with his friends, and I cannot describe how grateful I am that he found such loyal people.

I cannot wait to see where life takes him and I cannot thank his classmates enough for helping him get to where he is now. Max has become a leader, an inspiration, and a friend to all, thanks to his astounding peers.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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special-needs-mom-note Several nights ago we took my son to the park just before dusk. It had been in the mid-60s out, nice weather for playing outside. My son, who is autistic, apraxic and who also has several other diagnoses, was having a blast following the other kids around and riding on the little merry-go-round.

Several times the other kids would ask him questions like, “What’s your name?” or “How old are you?” But in Adam’s excitement, he didn’t seem to hear or understand. He was happy to be running around and playing outdoors. Several times one of the other kids asked me what he was saying, and I had to interpret. The older he gets, the more we find ourselves trying to explain why he has difficulties talking.

Little kids don’t seem to understand. They will yell in his face over and over thinking that will get their questions answered or give him mean or weird looks because he’s different and in his own little world at times.

If I could sit them down and gently talk to each of them about my son, this is what I would say, this is what I would want them to know:

Dear Little Ones,

I know my son seems different, and I know he doesn’t talk as well as you do, but if you would be willing to give him a chance you would find that he’s the sweetest little boy you will ever know. He may seem to be hyper and excitable, but this is because he finds so much joy in the world around him.

If you would take the chance to get to know him, to slow down and try to understand him, you would love the few words he would have to say. Although you might not understand every word, he does understand you and loves to watch what you do. He absolutely loves other children and while he may come across a little rough around the edges, it’s really just his way of showing you he cares.

It may be annoying when he babbles the same few words over and over or when he copies everything you do, but he only does these things because he admires you. He learns from watching others and loves to do what they do too.

If you would only give my son a chance, he would make a great friend. He’s loyal and caring and truly loves the people around him. I hope you too will see him the way I do and decide that even though he may be a little different, he’s a great person to get to know better.

Sincerely,

A Special Needs Mom

At times it’s hard to watch my son interact with others. Many do not understand him, and I worry that as he gets older, he will have an even harder time making friends.

I cannot always protect him from the hurts of this world and from others, but I can tell others about my son and hope one day they decide to give him a chance and see what an amazing little boy he truly is.

This post originally appeared on Singing Through the Rain.

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My son,

I held you in my arms a few minutes ago. I was contemplating the future and it is overwhelming. So I choose to exist here in this moment, and avoid visions of the impending scoliosis that your diagnosis, Pelizaeus-Merzbacher disease, dictates.

Pelizaeus-Merzbacher Disease the mighty

You are so small. Your spine is the length of my extended hand. I usually slightly press on it, hoping to counteract any imminent curves. It is foolish, I know. I am learning to feel every vertebrae with my fingertips, and I am thrilled when I feel the spaces in between, their straightness. “Does every parent do this?” I ask myself. As you started being restless, I left you on the corner of the couch with your favorite toy piano, and I feel the need to write you a letter.

My son…

I know you are tired of sitting down. Tired of being held. Tired of being put here or there. Though you are exhausted, the last thing you want is to lie down. Nonetheless, I still leave you on the same safe place where you won’t fall, and I hand you the same toys. Like an unfinished Minecraft game, your world seems finite. The exploration ends as far as your arms reach, as far as your inchworm crawls get you.

So from one person’s arms to the next you go. Like hitchhiking your way around. You have little control of where you end up. Sometimes I forget about you, and so you begin staring at the lights, at the ceiling, at the shutters, at your parents’ wedding picture in wonder. I am sure you have memorized every nook and cranny of our living room, our kitchen, our bedroom. If you were an architect, you could perfectly trace our home from memory.

Pelizaeus Merzbacher Disease the mighty

I am sorry, my son, for all those days I am busy. And for the ones that I am not busy, and I selfishly choose wrong. Sometimes my imagination freezes and numbs my every thought.

I have seen you stay in a sitting position for long periods of time. People walk by and not notice you as if another piece of furniture. But I see you from across the kitchen smiling as you play your little toy piano like a virtuoso. You pull the lever on the piano to change the music, and you have this accomplished grin on your face  Even though it may go unnoticed, you do not care. You know the effort it takes, and you relish in it. You try to clap your hands, but your left hand misses the right hand two out of three times. You celebrate every win. You are my hero.

I promise to make it up to you. I will make each and every day as special as you make mine. I will discover new songs with you, my Maestro. We will watch the stars and roam the Earth. We will cheer goals and touchdowns. We will dance and laugh.

And we will pray in appreciation, for forgiveness, for patience, for faith. Though you can’t move your body, you will help move mountains someday, little boy. You already have me on the move. I am coming for you. I hear your cries. Let’s go play. I love you.

Dad

Pelizaeus Merzbacher Disease the mighty

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

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The first time I heard the word autism actually said out loud, in reference to my son, he was 3 and a half.

His sweet teacher at the little Monetssori preschool down the street said he might need to be evaluated for it.

He is already reading, without you or I teaching him a thing. This is called ‘hyperlexia’. It can be related. Also, watch him in the classroom and on the playground. He doesn’t play with the other children at all. He lectures them about sharks sometimes, but he doesn’t really play. And then there’s the socks, shoes, tags in the shirts, the limited foods he will eat… it just seems like there is more going on here than what I typically see in 3-year-olds.

I loved this teacher. I thought she was better with my son than even I knew how to be. She adored him.

And I wanted to punch her.

Not because I thought she was wrong, but because what she was saying confirmed fears that I had been harboring since my son was a baby.

I remember when I was pregnant, reading somewhere that if a child makes it to 18 months old and meets all the developmental milestones, he or she will not be diagnosed with autism. (Note: I am not sure that is what was actually written, but that is what I understood to be true at the time.)

Around the time my son was 2 weeks old, it was clear that something was going on. So, for every single well-child check-up, all the way to 18 months, I held my breath as the doctor asked about his delayed walking, the foods he had been introduced to but refused to eat, and the number of words he was speaking. Every appointment, I would leave feeling relieved.

Only six more months… three more months… one more month. He is 18 months old…we made it!

His second birthday came and went. Autism was something I no longer worried about. Instead of any diagnosis, it seemed clear that it must be my fault that he never, ever slept longer than a three-hour stretch. My parental weakness was clearly why pulling out a pair of socks was enough to send both of us into a panic attack.

Every night, my sweet little boy would pull out the emergency evacuation card we had taken from our last plane trip (no judgment – he loved it and there was no way I was leaving it behind after a six-hour flight with a 2-year-old). Every night, he asked me to “read it” to him for his bedtime story. Every night, in the same exact order, I would channel my inner flight attendant, and pretend like I was walking through the instructions given on a plane.

airplane safety sheet

In the event of a water landing…

This aircraft is equipped with five exits – two in the front, two in the middle and one in the rear. Please look around to find your closest exit as it may be behind you…

Smoking is prohibited at all times…

He relaxed, listened and memorized the entire script.

A year or so later, when his teacher mentioned him lecturing the other children about sharks, I thought of that evacuation card. We had since gathered a few more, and he knew all the differences between the Boeing 737 and the Airbus 318 evacuation procedures. I mentioned this to her, hoping to prove somehow that she was wrong.

He is just so smart,” I said. “He is,” she agreed. “Maybe a genius. But that can also be part of this.

Four doctors and almost seven years later, it turns out she was right.

Four doctors, thousands of tears, too many terrible parenting moments in which I acted out of fear that I had caused something I had no idea how to stop, and seven years later, we received a definitive autism diagnosis.

The evaluation took three days.

On the first day, it was just me in the room with the developmental pediatrician, answering questions about his developmental history. When he was a baby, when he was 18 months old, when he was 2 and a half, when he was 4. As I answered her questions, I knew.

Autism.

It used to be such a heavy word to me. I would roll it around in my head, over and over, trying to apply it to this child I couldn’t reach.

Autism.

It used to be so scary, so unknown, so empty.

Autism.

It seemed like something to be feared and avoided, rather than something that could explain, define and understand.

Not anymore.

Now, it’s just autism.

Autism makes it all make sense.

Autism is part of who he is – and has always been.

This post originally appeared on “Not The Former Things.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? 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.

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