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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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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The Afternoon I Spent as an Adult With Special Needs

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Back when I did head injury work, we often engaged in training sessions with families where we helped facilitate what it feels like to be an adult who suddenly has lost the ability to see or use a limb. I found it extremely enlightening for family members to get that insight, if even for a few hours.

I recently had the opportunity to experience something firsthand that I’d never gotten to experience before –nor do I want to again.

I spent the day as a mostly nonverbal, mobility-limited adult.

Without going into great medical detail, I spent the bulk of a day awake on a ventilator while my ability to move my face and neck was greatly restricted, as were my upper and lower extremities, due to catheters and blood pressure cuffs. I was completely unable to speak, although I did have the ability to communicate via writing (and sign; however, no one actually knew sign language so that wasn’t extremely helpful.)

It was excruciating. I kept trying to communicate. By no faults of their own, doctors put medical needs first, and my attempts at communication were often ignored or even thwarted. Attempts at self-repositioning were misinterpreted as attempts to dislodge equipment when, really, oh my God, sometimes your butt just hurts after you’ve been in the same position for awhile. I’ve never had so much respect for what life as an adult with special needs might be like because I’d have never experienced such an uncomfortable position for so long.

I’ll go back to work (where I help adults with intellectual disabilities) with a newfound respect for people with limited mobility. I’ll go back home with greater patience for my children and their heightened communication needs. I’ll miss that phone call so I can give my child a longer response time. I’ll understand when an adult I work with bangs his arm to show me he may need something he’s not getting. I’ll understand that sometimes your butt just really hurts.

I knew all these things before. I know them now. I get them now.

Mollie-fam

A version of this post originally appeared on The Behavior Station.

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The First Time I Looked at My Mastectomy Scar

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So I’m back in my own surroundings and out of hospital, and it feels blissful. I only have to do one thing today — well, aside from the essentials like taking care of the wound and keeping up on my medication.

Today is the day I must look at my scar.

If I don’t, it’s defeat because it’s my body, and I need to know what lies below the dressings. I need to know what lies beneath.

In the hospital I had a brief flirtation with this when I looked at my reflection in the the bath faucet, but I glanced away rapidly, not ready for what I would see.

Today though I’m ready, and I admit, my narcissistic tendencies are going to help me on this one. I undress first and get in the shower enjoying the scent of Soap & Glory shower cream. Clean, sumptuous and fresh. I spend time washing my skin, washing away the institutionalized smell of the hospital. It feels so good to be in my own bathroom, in my own bath.

Freshly bathed and dry, I turn slowly to the mirror and dart my eyes feverishly, knowing what I need to do. I look…

Once I look, I can’t stop. My eyes take it all in, and I stop in my tracks. I look at “it,” and many thoughts flash through my mind. It occurs to me that I actually went through with the mastectomy operation, and it was a success. That thought doesn’t stay long enough in my head, though, as vanity chick breaks out, and I’m looking at it from an aesthetic point of view, thinking how deformed and monstrous it looks. The reconstruction is high and wonky, and the stitches remind me of a sewing lesson when I was in primary school where we learned to do blanket stitching but you pulled too tight and your creation puckered. The whole reconstruction looks like it’s about to burst; it looks stretched, angry and raw. I notice, for the first time, stretch marks on my breast. Oh yes, and my nipple is in the pathology lab.

The vanity chick in me is getting way too much airtime. She needs to get off her perch and move out of my head. OK, time to get a new chick in my head to take a look. I’m searching for her. Scientist chick? I’m a medical miracle. I’m trying to convince myself to own feelings I don’t even have yet. Yes that’s it, I’m a medical miracle — what they’ve done is amazing really. I’ve had cancer cells removed from my body, chemically treated pig’s membrane attached to an expanding implant and then my original skin sewn back on. 2015 and this is where we’re at. Pretty impressive. The pig’s membrane holding the implant in place intrigues me; I remember when the surgeon told me the plan and the subsequent Google search I’d done that night. Let’s hope my body likes pork. (Given how much I love pork belly and barbecue ribs, it would be an abomination if my body rejected this breast. This chick loves pork.)

Anyway, I’m staring at the new breast. I’m doing some psychological “own it” piece one of the girls from my support group told me to do. “Feel it!” She said “Own it!” So I’m simply staring at the breast, coming to terms with it. I feel like I’m staring at someone else’s body. It feels so surreal; 72 hours ago I had a pair of breasts, and now I have one breast and a wound. It’s a wound at the moment, but I know in time it will be a breast. It’s a bit like when I was 12 and waiting for breasts to arrive. I had mounds then, but I knew I would have breasts eventually, and yes, they came and served me and a few admirers pretty well.

So yes, now I can tick looking at breasts off the tick list. It’s been 10 minutes, and I need to put on some clothes. I feel OK. Mission completed. I’ve looked, and I didn’t cry or vomit. Time to put on my Marks & Spencer sports bra and favorite leopard skin knickers.

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Share These Stories to End the ‘R’ Word

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This Wednesday, March 4, is the annual Spread the Word to End the Word day. This is an awareness day about the hurtful effects of the word “retard(ed),” otherwise known as the “r-word.” This day also promotes inclusive people-first language.

Check out and share the following r-word stories to let your friends know why it’s important to end the r-word:

To view more podcasts and articles on the r-word campaign that have been featured on Special Chronicles, head here, and be sure to take the end the r-word pledge today.

You can also share this video from my friend Tim Shriver Jr., co-founder of Spread the Word to End the Word:

This post originally appeared on Special Chronicles.

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