Autism Is a Funny Little Bird

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Autism is a funny little bird. He hopped in through a window I hadn’t meant to open. When I turned around, he was looking at me with unsmiling eyes.

I was so afraid.

I tried to shoo him away, asked him to leave 400 times. I was stern. I was pretty f*cking rude. But he wouldn’t leave. He didn’t know how to fly. I prayed to the sky, looming gray above the roof of my house, for that little bird to leave. I made deals with voices I shouldn’t have heard, voices that spoke in tongues I didn’t understand.

But the little bird still stayed. He flapped around the rooms of my house, made sounds like a screeching owl and fluttered around my head fast like hummingbird wings. He made his nest near my boy and settled in for a long stay.

The bird was horrible at first. He asked me to do things I didn’t think I could do, things I wouldn’t have ever wanted to do. He did not care if I was tired or hurting. You, the collective you, would laugh when I brought it with me to the supermarket. You weren’t being mean, but it was funny to see me chasing my bird around the store. Sometimes I admit, I laughed too. I sat right down on the dirty floor in the cereal aisle, and I laughed.  Like a mad woman laughs at the gnomes that dance on her back porch. I laughed because my bird was strange and devastatingly beautiful. I laughed because I was broken up on the inside, and you were staring at me, and the bird was chirping for cookies in his little autistic chirps. I laughed to suffocate the sobs climbing up my throat.

The bird stayed. He grew up in fits and spurts with my boy, and I tried to teach him to fly (and ride a bicycle and eat with chopsticks), but he didn’t seem to really want to learn. He didn’t ask for much. I fed him cookies, and he chirped happy chirps, and I figured out how to make him smile. I decided not to suffocate the sobs when they came, and when I did that, I found they came less and less.

The bird stays. He stays, and I still wish he would go. I wish I could see a boy without a bird nearby. I wish it like you, the collective you, wishes for a million dollars to fall from the sky. I wish it less and less though.

The bird stays. He stays because he can’t fly, and even though he never may, it’s up to me to help him try.

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This post originally appeared on Don’t Hate the Player, Hate the Game.

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C’mon Autism, Give Me Your Best Shot

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Dear Autism,

You entered our lives about 5 years ago, and, like a thief in the night, you robbed us of everything.

You stole all of our plans for our precious baby boy. The school he would attend, the vacations, friends, the possibility of a girlfriend, prom, college… everything all in one diagnosis– gone.

You’ve wreaked havoc on us with the endless screaming, the pulling of hair, the biting, the sleepless nights and the constant worry. All of the “if,” “when,” “buts,” and “whys.”

What if he never talks?

When will he show signs of progress?

But what if I’m not strong enough for this?

Why him?

There is no doubt in my mind that I would lay my life down tomorrow, just for my son to have an equal shot at life. Not even a head start, but just an equal shot at the everyday things most people take for granted. I would make that deal in a second, and never think twice. But that would be for his sake, not for mine.

My heart breaks every time I see him struggle. Why him? It’s just so damn unfair.

Autism, you have been the worst and best thing to have ever happened to me. While what you stole can never be adequately put into words, what you weren’t counting on is that through the struggle I gained strength.

You taught me you’re not a life sentence, but you are life-changing. I’m a kinder person because of you. I’m a more patient person because of you. I’m a more compassionate person because of you. I don’t get caught up in “What will people think,” because of you. I take absolutely nothing for granted because of you. I celebrate each little victory because of you. I laugh more because of you. I’m more thankful because of you.

I’m stronger, autism, and it’s all because of you.

Autism, 5 years ago you may have crushed me, but you did not destroy me. You put up a fight each and every damn day, and some days you come out the victor.

But the fact of the matter is this — A man’s strength isn’t proven by how many punches he can throw. It’s proven by how many punches he can take.

While I may not know when or where your next punch is coming from, I do know this…

I’m still here.

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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I Have a Little Secret to Tell the Disorder That Challenges My Family Every Day

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Dear Dystonia,

I hate you. You’ve challenged me in ways I never knew possible. You cause exhaustion, pain, frustration, confusion. You leave isolation and fear in your wake. You steal innocent and worry-free childhoods. You make it impossible for anyone to relate to your victims. You work your ways into all aspects of life and into places nobody wants you. You’re mean, you’re unforgiving, you’re relentless.

I hate that we can never beat you, never get rid of you. I hate that you turn the everyday mundane into obstacles. I hate you for taking away my right and ability as a mother to help my kids and make them feel safe. I hate that you cause stress and anxiety and helplessness. But mostly, I hate that you have my kids. They’re sweet and little and perfect, and they don’t deserve you. You’re destructive, and I hate you.

But, I have to tell you a little secret. While you’ve been attacking the people I love most in this world, you’ve unintentionally left behind some unexpected consequences.

When you force me awake time after time, night after night, you give me time. So much extra one-on-one time. Time with no distractions, no phones, no TVs, no toys. Just me and my little boys snuggled up in my bed together. While you were busy causing vomit and pain, you left behind lessons in what it means to truly love unconditionally. While you were busy forcing four people into one bed, you’ve also forced closeness and intimacy. While you were busy causing pain in little boys’ legs, you taught them they can overcome, persist and achieve. While you’re busy making funny postures and movements, I’m learning to read the minute details of my children that would have otherwise gone unnoticed. While you’re busy disguising yourself to outsiders, you’ve taught my kids that their parents will always believe them, even when others don’t. You fostered a trust and a bond I never knew possible. While you were busy trying to stress my marriage, you left us with the true meaning of partnership and commitment. The financial stress caused by your cruelness gave us real life lessons in what it means to prioritize and put family first.

So my dear Dystonia, bring your best. We can take it. Just know that while you’re busy causing pain and irritation, I’ll be busy picking up the little nuggets of gold you’ll be leaving behind.

This post originally appeared on Raising Dystonia.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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Listen Up, Cerebral Palsy. I Have a Few Things to Say to You.

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Dear cerebral palsy,

On March 25, 1991 a little girl was born to a newly married couple in a rural town in South Africa called Lusikisiki. That little girl was me, and my life was on course to be just like the life of every other little girl in the world.

Then you came along and turned all our lives upside down.

What is it they say? That we make plans and God laughs? I’m pretty sure God was the only one laughing because I know I wouldn’t be if doctors told me my first child was in for a lifetime of pain, discomfort, rejection and uncertainty.

I was diagnosed with you at around 6 months old, so you’ve been with me almost all my life. You and I have a complicated relationship. Sometimes I wish you would just disappear and never return, and other times I hardly notice you’re there.

However I feel about you on any given day, I live with the knowledge that without you, I wouldn’t be me.

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So thank you, cerebral palsy, for teaching me humility, gratitude, perseverance, self-love and love for humanity — qualities which have served me well in all aspects of my life.

Yours sincerely,

Nisha

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why This Little Certificate Is Actually A Huge Deal

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My son, Riley was diagnosed with autism a year ago. It was, of course, not what a parent wants to hear but, we’ve pushed forward, even through times we wanted to quit. This is a story of one of those times. It’s for anyone out there who feels like there’s no hope and maybe wants to throw in the towel.

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The moment above was a huge accomplishment for Riley, but it was also a win for my husband, Keith, and me. It came with an extreme amount of work — work we couldn’t have put in alone. Coaches like Coach D, who’s Riley’s hockey coach, showed him an amazing amount of patience. Coach Robyn showed Riley incredible kindness and care. Coach Josh and Coach Kelly showed Riley he was safe and could trust them. Coach Tom once sat in the hallway talking with us while I helped Riley through a huge meltdown. Coach Chad first worked with Riley out on the ice, encouraging him and giving him confidence.

We made it through an entire hockey season and never gave up. We finished it together as a family, for Riley, for ourselves. There were so many times Keith and I would think, Why are we doing this? This is nuts! Crazy! Oh my God, I just want to bury my head in a hole and never come out. Then we’d look at Riley and see his love for hockey. His drive was there; we just had to help him get the tools he needed. We dealt with extreme meltdowns — hitting, pushing, embarrassment. We probably looked like the parents with the uncontrollable child. I once heard someone comment, “Wow, number 2 (Riley’s number) is our entertainment.” As a parent with a child with special needs, those words kill you. It kills you to hear things like that because in your heart you just want to fix everything. If that person only knew the amazing accomplishment we’ve made (and now they will because I’m telling everyone!).

Who knows what the future holds for Riley, but I do know we’ll continue to support him. I cannot imagine what it’s like in his part of the world. For him to work through things and continue to show love and the drive is amazing. It just goes to show you the love, kindness, support, safety, confidence, encouragement and trust he needed to make it through.

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Everything I’ve Ever Wanted to Say to Asperger Syndrome

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Dear Asperger syndrome,

I hate you, but thank you. I hate you because you’ve taken me to hell and back. You’ve made life 100 times harder than it should have been. You made me different, you made me stand out, you made me a target for bullies — the bullies who took my childhood away from me. You’ve made my family fight for everything, even the basic rights of a child. I know this isn’t all your fault, I know the system is failing people who have you, but without you there wouldn’t be a fight. Life would be so much simpler.

Then again, without you I’d be so different. Yes, life would be simpler, but would I like the same things I do? Would I have the friends I do? I have some of the best friends in the world, and without you I’d never have met them. I might have been the popular kid with lots of friends but none who are close. I might have been the kid who I now despise most — the bully — rather than the kid who stood up for others. Without you, Asperger syndrome, I wouldn’t be the confident young woman I am today. I wouldn’t have close friends who love me just the way I am. I have a bright future ahead, and I help out all I can along the way. Without you I just wouldn’t be me.

So thank you. Although you come with your own set of challenges, you bring with you some amazing benefits. Sometimes I hate you, but most of the time I couldn’t — and don’t want to — imagine life without you.

From,

The person whose life you make just the way she likes it (bar the bullying!),

Lottie

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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