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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

RELATED VIDEOS


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.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


My son was diagnosed with autism a few months ago, and it’s been my favorite topic of conversation ever since — sometimes I feel like it’s the only thing I talk about anymore.

I started asking myself why sharing information about this personal thing has become so important to me. It’s not like autism has been a life-long cause of mine; I only vaguely knew what it was until a few months ago, and didn’t know anyone who’d been affected by it.

Is it because I want to share my son’s autism publicly? Not really. He’s got some classic signs of it, but honestly, a small part of me hopes the diagnosis was wrong and in time we’ll see he’s just a slightly quirky kid with a speech delay.

Like every parent, I watched and waited for my kids to hit the milestones, looking for any sign of delays or abnormal development. When my son’s speech seemed delayed, and we noticed him flapping his hands now and again, my first thought was, God, please don’t let it be autism. I’m not proud of that, but it’s true.

You hear about it so much in the news lately, so it was the first thing to pop into my head. Autism scared me. Not because I had images of grown men talking about boxer shorts from K-Mart, like in the movie “Rain Man“; I knew autism was more than that. What scared me was how unknown it was to me at the time. You can’t see it. It affects everyone differently. There’s no cure or medicine for it. Even doctors trained in the field have trouble diagnosing it. Everyone’s arguing over the causes of it.

I realized today, though, why it’s so important for me to talk about autism and raise awareness. It’s so people I know who may be touched by this disorder, can be less scared of it and more accepting of a diagnosis because they’ll know someone who’s gone through it, too.

Thinking about autism in the abstract is very different than acknowledging it in your own life, and maybe like me, hard to accept the signs. They can know that, while we never wanted to see the signs and would have rather ignored them, we still acknowledged them and quickly sought treatment. Maybe they’ll be more willing to recognize autism if they see it in their kids. They’ll see that I’m happy and so is my son, and that he didn’t suddenly change because of a diagnosis.


Before the diagnosis, I had no role models for living with autism. I’d seen videos, talked to professionals, and read blogs, but that still didn’t make me less scared or accepting of it in our lives. When we hear someone say, “Oh! I know someone who…” they’re saying those words to bring the topic closer to home, to humanize it and make it real.

Since I didn’t know anyone who’d been through it, I hope by talking about it so much, I can bring autism closer to people I know, so they “know someone who” themselves.

This post originally appeared on “My Life, Introverted.”

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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Shortly after having my son in June of 2014 and our surprise diagnosis of Down syndrome, I was feeling down and worried. I made the mistake of turning to the Internet for answers, and frankly, there is some scary stuff out there.

I was reading horrible thing after horrible thing about illness and heart conditions and delays. I was terrified. I was doubting my ability to be his mother and doubting my strength.

down syndrome the mighty

He was less than a week old and I couldn’t even fully enjoy the beautiful baby I had before me. I would hold him when I was alone and cry. I would cry for the fears. For the possibilities. For the unknown.

I should clarify, I never once didn’t love my son. There were just so many unknown factors that can partner up with a Down syndrome diagnosis and my post-pregnancy brain, raging with hormones, was having a rough time not dwelling on so many negatives.

One day while I was just holding Zak as he slept — I hardly ever put him down back then, as I was so afraid something horrible would suddenly happen (what I am not sure!) — I was just scrolling through my Facebook feed when I encountered a page called Healing Harper.

Unbeknownst to me, this was actually a local family. Harper, who has Down syndrome, was born a few months prior to Zak and was quite ill. She was in the hospital when I came across the page and I continued to learn more about her and her family.

down syndrome diagnosis the mighty

After seeing her strength and the strength of her family,  it dawned on me… Zak is healthy! We are not in the hospital. We are home. If they (Harper’s family) can handle all of that, why can’t we handle a little extra chromosome?

Not only did the Facebook page completely change my attitude toward the diagnosis, but it gave me the idea to start my own page for Zak as well.

After tossing around many names, I landed on calling it Eyes Wide Open,  because mine were. It was a turning point for me. I quickly became an advocate and Zak’s page now has over 3,000 followers. I refer to him as Extraordinary Zak… because he is!

I actually reached out to Harper’s mom and we have become friends on Facebook. We haven’t had the chance to meet in person yet since Harper is still in and out of the hospital. But some day we will.

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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Sophie Wright, 20, is an illustrator from Leeds, England, who lives with anxiety. She feels anxiety disorders are commonly misunderstood, so she decided to create a comic about it based on her own experience. Take a look:

Screen Shot 2015-04-03 at 9.37.22 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.37.47 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.38.12 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.38.44 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.39.02 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.39.32 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.39.48 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.40.08 AM
Created by Sophie Wright
Screen Shot 2015-04-03 at 9.40.24 AM
Created by Sophie Wright

Wright says on her Tumblr page that she hopes these comics will help people who live with anxiety as well as those who want to learn more about it.

Check out more of Wright’s work on her online portfolio and Tumblr page.

h/t xo Jane

Want to end the stigma around mental illness? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.