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.

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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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When My Son With Autism and I Got Stuck on a Roller Coaster for 15 Minutes

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This past summer, my family and I spent a day at Great Adventure. It’s the only place Justin, my severely autistic son, willingly stays for more than an hour (I often joke with my husband that wherever we live has to be within a 30-minute radius of a Six Flags park.) It’s usually a fun excursion for us, mostly free of angst, and something I truly enjoy doing as a family.

On our last trip there, however, things got a little bit interesting. We were all safely ensconced on the Runaway Train roller coaster, rushing precariously along to our first hill, when I looked ahead and saw a man in the front row waving his camera. I heard one of the employees scream, “You can’t have that on the ride!” and immediately had the feeling all of us were going to pay for that jerk’s need to have a selfie.

Was I ever right.

Halfway up the first hill, we came to a jerking halt. I was seated next to Justin, and I immediately took his hand and squeezed it, reassuring him we’d be OK. Within a minute, one of the employees was climbing up the side stairs. I turned to grab her sleeve as she passed so I could get some information. I told her my boy was severely autistic and our unscheduled stop would be hard for him and asked her how long we’d have to sit there.

She told me even after they’d taken the camera from Mr. Important, we’d have to wait for a supervisor to come restart the ride, which would take up to 15 minutes. I thanked her, and as she recommenced walking, I heard the slow whine of my son’s discontent begin. I knew this was going to be a long 15 minutes.

When you’re a writer, metaphors seem to fall into your lap. As my son fumed (and trust me, so did the rest of the people on the train), I had time to think about being stuck, both literally and figuratively. I looked at my son. He was agitated, but he wasn’t pinching me, crying or trying to get off the ride as he would have done only a few years before. I was so proud of him as he went with the flow, hopefully reassured by my constant flow of “it will start soon.” I praised him, squeezed his hand and made a mental note of how much progress he’d made.

Then, I realized he wasn’t the only one on the ride who’d made progress. We all have our demons. Mine involve over-consumption of chocolate (a fun one!) and anxiety. I’m not going to blame autism for this — I was a worrier even before my kids were born (I’m fourth-generation. As my mom says, I come by it honestly). Before the kids were diagnosed, I could talk myself down from any anxiety ledge. I can truly say it was a part of my life I didn’t like but had learned to work around.

When not one but two of my kids were diagnosed with autism, anxiety became my new best friend. To be fair, when my kids were in their early years they were plagued by sleeplessness, gastrointestinal disorders and a general unhappiness that was both exhausting and depressing. I worried they’d never sleep. Hell, I worried I’d never sleep. I worried they’d never eat. I mostly worried they’d never experience more than a few fleeting moments of happiness, which is all I ever got in those dark days. My worries became a mantra of “What if this is permanent?” which I carried around with me everywhere. I couldn’t shed my fear for more than a few hours at a time. I was stuck. And now, as I realized on that damn roller coaster, I’m not. Most of the time, I’m free.

I’m not free of everything. My fears of what will happen to my boys when their dad and I are no longer around are permanent. I’ve accepted this and have (somewhat) learned to live with it. To me, it’s the great divide between me and parents with kids who will safely live independently one day. I don’t think it’s a bridge I’ll ever cross, although I’ll wave longingly to the other side from time to time. But 10 years after my first son was diagnosed with autism, I realized I’m free of these things: I’m free of worrying about what other people think if my son’s loud in a movie theater (it happened over break, it was three minutes, I figured the rest of the audience will live). I’m free of what other people think, period.

I’m free of worrying over whether I’ll ever hear my severely autistic son’s voice (I did when he read his first book to me at age 11).

I’m free of trying to do everything right. Nobody can, whether they have kids on the spectrum or not.

I’m free of trying to maintain friendships with people who don’t understand my life.

I’m free of worrying every single day about my boys’ futures. The time for that will come, but it’s not here yet. I’ve learned to live more in the present.

I’m free of feeling guilty over what caused their autism and what I have and have not been able to do for them since their diagnoses.

I’m free of worrying whether or not they’ll ever be happy. Sometimes, my boys are by far the happiest people in our house.

Even on that roller coaster, I was free of panic over how Justin would handle our interruption. He was fine. So was his mama. It was huge, monumental progress for us both.

And as New Year’s resolutions fade with the first of many bites of chocolate, I resolve that remaining free is the one I will carry with me.

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New Book Series Tells Stories You Can’t Find in Bookstores

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Finding My Way Books” began with a meeting between two friends. I was leaving a job in infant-toddler services, and my friend, Vera, was remaining. We’d shared an office and both worked on Early Intervention teams. I was the occupational therapist on one team, and Vera was one of the early childhood special education teachers on another team.

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When we came together, Vera was moving deeper into her Ph.D. curriculum in special education. She was excited about promoting self-determination skills in young children. At the same time, I was moving away from working with young children but wanted to continue supporting families in some way. I’d always wanted to write children’s picture books. On home visits with families of children with disabilities, parents would share their frustration and disappointment about the lack of books written about their children. They wanted their children to be included in the world of books. They needed to see them in books at the bookstore or at the library. A seed was planted — I thought for years about writing the books they were searching for but couldn’t find.

Vera and I had lunch together, and I told her I thought we should create books about children with disabilities learning skills needed for self-determination. She loved the idea. These books would provide families with encouragement and support. They would make the world a better place.

We both agreed the books needed to have photographs rather than illustrations so the stories would be easy for a child with developmental delays to understand. We also wanted them to be nonfiction because we’d experienced such wonderful, true stories through our work.

These books were to be stories about everyday life. We wanted to show that children with disabilities are just like other kids. They’re fun! They may do things differently and need more assistance, but they’re part of our world of children to be celebrated. We wanted children with disabilities to be included, to have a voice and tell their own stories. This was our way to say, “Yes, you’re important to our world. We want to hear you.”

Mary, our photographer, was working with us at our infant-toddler program at the time. She was creating videos about families receiving Early Intervention services. Mary was the perfect person to make our books special.

It’s been nearly four years since Vera and I got together for that lunch. We’ve created five books, each featuring a different child with a disability or developmental delay. Each book also includes a family guide with information on self-determination and classroom activities. Our books are entitled: “I Want To Be Like Poppin’ Joe,” “Kaitlyn Wants To See Ducks,” “I Don’t Know If I Want a Puppy,” “Marco and I Want To Play Ball” and “MyaGrace Wants To Make Music.”

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We’re working hard to get the books out into the public. Currently, a few libraries and one zoo gift shop carry them, and I’ve started doing author visits on Skype. We have free downloadable lesson plans to go with each book available on Teachers Pay Teachers. Our books are also available on Amazon and Barnes and Noble.

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Please visit our website to learn more about us at findingmywaybooks.com. I would love to have you contact me at [email protected] if you would like more information.

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