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26 Things I Know for Sure About Raising a Child With Autism

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I’m about to write some sage stuff here, y’all. Are you ready?

Here are the things I know for sure about raising a kid with autism.

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26. I know for sure my son is awesome. I know for sure my son is worth it. I know for sure my son makes me happy, even though he is equally maddening. I know for sure there is not one thing in this world that could ever make me stop loving him. I know for sure that whatever this life throws at him, he’s eventually going to knock it out of the ballpark.

I could write volumes about what I know for sure about raising kids with autism.

Follow this journey on Autism in Our House.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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. Check out our Submit a Story page for more about our submission guidelines.

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To the Store Employee Who Heard My ‘Odd’ Request for My Child With Autism

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Dear “Santa Jay,”

I walked into your hardware store on December 5, 2014, not as a consumer, but as a mom. A mom who has a child with autism. I was no stranger to what I was about to do, as I have done it with other businesses more times than I can count. I was fully prepared for the “odd” look I assumed I was about to get by asking questions like, “Excuse me, but do you have anything that resembles a panel horn?” (My 4-year-old taught me that it’s the control box that controls the fire alarms in large buildings) and “Do you have any boxes with pictures of microwaves on them?” Yes, I know that bewildered head tilt, eyebrow raise and wide-eyed look all too well. It’s the look of confusion, surprise and sometimes judgment of my ability as a parent.

Brittany Miller.2

I’m sorry to say that as you greeted me with a “Can I help you with anything today, ma’am?” I had already judged you and your reaction falsely. I spouted off my normal speech. “Yes, I know this is going to sound like an odd question, but do you have any keys that have been miscut that I can buy from you? My 4-year-old has autism, and he is obsessed with keys.” I waited for your eyebrows to raise and your eyes to widen as you soaked in my question, but you didn’t give me a funny look or even attempt to raise an eyebrow. Instead, what you said to me is something I will never forget. Do you remember what you said to me? I do. I remember it word for word.

“That’s actually not a weird question at all. I get one or two parents a year who ask for those.”

What you said may not sound like much, but to a mom who often feels lonely, isolated, judged and living in a world others don’t understand, your words really translated to this: You are not alone.

And in that one moment, on the date of December 5, 2014, and in that one single second, I didn’t feel like I was.

Your response gave me much more than happiness. It gave me hope, it showed me compassion and it demonstrated acceptance for my child and the world he is living in. Do you remember what you did next?

You then led me to a bucket filled to the brim with miscut keys, and you even helped me pick out some you thought my son would like while telling me, “Take as many as you want, free of charge, and come back anytime for more.”

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This leads us to now, more than a year later, and your words have still helped me get through some of my hardest days. My son is still obsessed with keys, and he carries them everywhere he goes. He even has “key breaks” at school as a reward for good behavior. Those keys that you so graciously offered to me for my child have become his biggest and best calming mechanism thus far.

Over the past year, I have brought my son into your place of employment several times to pick out new keys to add to his obsession. Sometimes we see you, and sometimes we don’t. But just recently I stopped by to get keys from “Santa,” and I had the pleasure of speaking to you again. You asked me, “How is the little guy doing?” and once again, your compassion brought me to the verge of tears.

So I want to say thank you “Santa Jay” for not just for giving me and my child the material object we were seeking, but for reminding me I am not alone. That we are not alone on our autism journey. My son’s obsession with keys may fade over time, but I can promise you that the words you spoke to me never will.

Sincerely,

One of many mothers who has a child with autism

The Mighty is asking the following: Write a letter to a stranger or someone you don’t know well who showed you incredible love during the holiday season. 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. Check out our Submit a Story page for more about our submission guidelines.

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The One True Gift We Gave to Our Son With Autism

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As the parent of a teenager learning to drive, I was an utter failure. When my daughter, Natalie, took the wheel, I was such a wreck that it’s a wonder she learned to drive at all.

Several months after getting her license, she offered to take her brother, Daniel, for ice cream. While she’d proven to be a fine driver, I couldn’t help watching as she backed down the driveway, shouting advice and directions, gesturing like a traffic cop as she veered toward our neighbor’s lawn.

“You’re not helping!” Natalie yelled out the driver’s window as she inched toward the street.

“Be careful!” I cried redundantly.

“Yeah, yeah, yeah!” she yelled back, waving me off.

“Both hands on the wheel!” I bellowed in reply. “I mean it now!”

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As she shifted from reverse into drive, I observed Daniel in the passenger seat, eyes scrunched tight and hands over his ears, desperate, no doubt, to block the din of our banter. But as I teased Natalie later, it was as though he couldn’t bear to watch as he placed his life in his sister’s hands.

Eighteen months later, our mood was less jovial as we moved Daniel to a residential school in another state, an hour and a half from home. He was 15 years old. Seven years ago today, I let go of my son, placing his welfare in the hands of people I barely knew, relying on faith that we were doing the right thing for our cherished, special child. It was the most painful thing I’ve ever done.

I’d had several months to prepare and accept that he could no longer be educated through conventional special ed channels or safely cared for at home. The school we’d chosen was highly regarded, known for its success with students with behavioral issues. We toured and met the staff, asking every question we could think of. I talked to friends whose own son resided at the school, comforted by their positive experience. We were as confident as we could be that we were making the best decision possible under difficult and heartbreaking circumstances.

Yet there was no real way to prepare Daniel for the life change ahead, to explain our actions had his best interest at heart and that we’d done everything we could and it was still not enough. Words could not convey to our nonverbal, autistic child our profound love as we left him in an unfamiliar place and his care now in the hands of others. My dark fear that he’d believe we’d abandoned him almost broke me as I clung to the fragments of my tattered, trembling faith.

After Daniel’s move, I rarely practiced that faith, traveling to Wisconsin most Sunday mornings to visit him. In truth, I was glad for the excuse to leave the church behind. My parents were both gone by then, their memories filling the space they helped build before I was born and the church of my childhood imbued with more sorrow than comfort, awash in reminders of all that was lost too soon. The old hymns and liturgies were haunting in their constancy — vestiges of what I once believed invulnerable.

I attended church a few weeks ago, however, and met the new pastor for the first time.

“They say ‘America’s Got Talent,’ but I beg to differ,” she joked in her sermon, noting that reality TV rarely depicts a truly useful skill, a precious gift or a worthwhile endeavor.

“The high school teacher who makes algebra come alive — that’s talent,” she continued. “The musician who brings tears to your eyes. The parent whose children know they are loved.”

I missed much of what came next. I was suddenly back seven years to the third night after we’d left Daniel in Wisconsin.

We’d spoken every day to his floor manager, Kip, whom Daniel had taken to immediately. So far he’d adapted remarkably, Kip told us, better than most new residents. We’d been advised not to visit for 30 days, but Daniel was adjusting so well that Kip thought we may be able to come sooner, possibly for Christmas.

My voice broke with relief and gratitude as I thanked him.

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“Daniel is going to be fine,” Kip assured me. “He is secure in a way I don’t see very often. This is a child who knows that he is loved.”

I doubt Kip will ever understand how much those words meant to me and that they remain the most meaningful thing I’ve ever been told.

For all the ways I felt we’d failed him, we had given Daniel that one gift.

He knew he was loved. He knew we would come for him again.

It’s been a turbulent few years with my son. I wonder sometimes if he still knows the depth of my love for him, and how I treasure him despite the distance that separates us; if he remembers the love I could once demonstrate each day, waking him in the morning and seeing him to bed at night. I wonder what my weekly visits evoke in him. Are they like the old liturgies of my childhood, stirring memories of faith once held without question with the melodies now echoing both loss and promise?

Does he know me, still? Does he remember? Have the seven years he’s been gone blurred his sense of me, or do I remain one thing he knows to be true, to be constant, no matter what? He asks for me, but what is he seeking now? Does the memory of my love wound in my absence, or is it one true gift that distance cannot diminish?

I don’t know the answers for sure. But I keep faith that he does know, that he has always known, that I am with him and that he will always, always be loved.

Follow this journey on Good Marching: Experiences in Autism and the Rest of Life.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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‘Sesame Street’ Sent This Girl With Autism a Surprise for Her Sweet 16

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Tori Medlyn had a surprise guest at her sweet 16 birthday party — Elmo!

The beloved puppet made a special video appearance for Tori, who has autism and is considered nonverbal although she can say a few words, according to Little Things. Her mother, Lisa Medlyn says Tori loves to watch “Sesame Street” videos online.

Medlyn reached out to the PBS show in hopes that the company would send her daughter a birthday card, but what she got was much better.

For Tori’s birthday on November 28, “Sesame Street” sent her a personalized birthday video featuring none other than Elmo himself. Elmo spoke about some of Tori’s favorite things, like pizza, held up a photo of her and sang a song.

See Tori’s special birthday video below:

The birthday girl got to watch the video with her friends and family.

See Tori’s reaction to the special surprise in the video below: 

The company also sent Tori a bag with “Sesame Street” paraphernalia including books, cups and other toys.

“The reason I emailed them is there are so many missed opportunities when you have a kid with special needs,” Medlyn told LittleThings.com, a lifestyle and parenting site. “So it was really awesome because it was one of those times in our life that we all had something to look forward to… This is one thing that got to be just for her.”

Tori’s birthday present came just after “Sesame Street” launched its autism initiative “Sesame Street and Autism: See Amazing in All Children,” which introduced a character with autism named Julia.

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This Mom Nails How We Feel About Special Needs Marriage Statistics

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Erin Jones doesn’t care what the statistics say about special needs marriages.

Jones, aside from being the face behind the prescription selfie that launched the #MedicatedAndMighty movement, is a former hair stylist who took a break from the trade for the last six years to homeschool and care for her four children with special needs. She’s on the autism spectrum and also lives with ADD, SPD, celiac diseasehypothyroidism and hyperparathyroidism as well as anxiety and depression.

On Monday, Dec. 7, Jones posted a photo with her husband on her Facebook page with a moving description of marriages between parents of children with special needs.

Special needs marriages. Just like other marriages, only spicier. I read the statistics, just like you do. I know how…

Posted by Mutha Lovin’ Autism on Monday, December 7, 2015

 

The post read:

Special needs marriages — just like other marriages, only spicier. I read the statistics, just like you do. I know how most of them turn out. Here’s what else I know though… I’m no number. This man is no number. Love is hard. It hurts sometimes. It’s the ultimate yin and yang. Some days you won’t be all right and you won’t know how anything will ever be all right again… but you stay, and somehow it’s more than all right. It’s your twisted fairy tale come true. Your warped perfection.

The 36-year-old from Nashville, Tennessee, has been married for six years to her husband Brandon Jones, but they’ve been together for eight years. The statistics Jones refers to are the numbers pointing to an increased likelihood of divorce in parents of children with special needs, however new research challenges whether this is actually the case.

No matter what the number say, Jones isn’t paying attention.

“Love comes with lots of emotions, but love is a choice, not a feeling,” Jones told The Mighty in a Facebook message. “Statistics don’t matter. My choice, our choice, to continue to love and live together is why we continue to fall deeper into this beautiful friendship called marriage.”

 

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When People Say ‘You Don’t Look Autistic’

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“You don’t look autistic.” This is a common statement I hear if I ever tell someone my diagnosis. I use a service dog for my autism and severe migraines, and I am currently training his successor. So people are always curious as to why someone who can walk, speak and seems perfectly “fine,” uses a service dog. Most people assume I am training them for someone else in more “need.” While it is no one’s business, it is a common question.

Service dogs are trained to mitigate multiple different disabilities. Many are visible and many are invisible. Having one or the other or even both doesn’t make us any less disabled. Just because you can’t see my autism, doesn’t make me not disabled. My neurological conditions don’t have a “look.” Autism doesn’t have a specific “look.” It doesn’t usually affect an individual’s physical features. Autism can have physical manifestations, such as motor-skill delays and balance issues. I personally have balance and gastric issues connected to my autism. But even those aren’t “visible” to the untrained individual.

Autism is a part of everything I do. It’s a part of me. I can’t turn it on and off at will. Autism partially makes me who I am, but that doesn’t mean I should be singled out or treated differently. And I honestly prefer to be treated as everyone else. Is this too much to ask? Apparently in the United States, it is quite a bit to ask for. There are autism stigmas everywhere. I believe the new “Sesame Street” character, Julia, even empowers the stereotypes and stigma about how autistics should act. We are all individuals and cannot be stuffed into a tiny box of absolutes. We should be treated as individuals and respected as such.

The stigmas hurt us more than they help us. Every fellow autistic I know and have come into contact with wants to be an individual. They also have strong voices of their own, and they want to be heard. Does this mean every autistic is like this? No, but the adult ones I have met are.

So, the moral of this post is basically to think before responding to someone’s diagnosis. Saying something like, “You don’t look autistic,” is rude and assuming. Don’t put us in a small box. It isn’t easy for many of us to open up to people.

Please don’t make our lives harder with assumptions. Let us spread our wings and be ourselves.

Liz Bernstein.1

Follow this journey on Liz’s Life, Aspergers, Gluten Free and Raw Fed Aussies.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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