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!”

Kristen Scott.3-001

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.

Kristen Scott.2-001

“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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10 Things to Know Before Our Special Needs Family Visits for the Holidays

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Dear Family and Friends,

We’re on our way to visit with our autistic boys in tow for the holidays, and here’s what we want you to know.

Our lives are a bit chaotic, and we parent just a bit differently at our house for reasons you cannot fully understand. These things may seem odd, different or just wrong as far as you’re concerned. I get where you’re coming from because I used to think the same way, but there really is a method to our madness, and if we’re going to get to be a part of each other’s lives during this holiday season, there have to be some ground rules.

1. Try to be understanding.

We fight every day to make the lives of our kiddos as productive and fulfilling as possible. This means many sleepless nights, meltdowns, IEPs, ignorant educators, medical evaluations, neurological evaluations, testing evaluations, doctor’s appointments, pharmacy stops, short order cooking, ritual habits from before daybreak to after bedtime, countless therapy sessions, driving the equivalent of a super commuter every week and virtually no time for ourselves. We do not need or want your sympathy or praise, but a little understanding will go along way.

2. Don’t be offended or get defensive if…

We stop at McDonald’s before coming to your house to grab some chicken nuggets. My kiddos will only eat a few specific things made a certain way with specific tastes and textures. And no, they will not eat what you put in front of them. We love your cooking, but my boys do not have the same adventurous palates. We are trying to compromise.

Also, my boys sometimes choose to close themselves in a room and play their electronics as opposed to playing with the other children. They do not like lots of noise or stimulation around them. It truly hurts their ears and overloads their senses. If they do come out for snippets of time, we see that as progress. Let them come and go as they please. Enjoy the time they are out and around people. In fact, it would be helpful if you plan on having a safe room set up for them to escape to. You don’t need much in there except an outlet to keep the electronics charged.

3. Try not to react (or overreact) to meltdowns or tantrums.

There is a difference between a meltdown and a tantrum. We have learned that reinforcing tantrums causes more tantrums. Inversely, a meltdown can be caused by a myriad of stimuli occurring around my child. We will deal with these according to the suggestions we have received from our therapist. And no, I don’t want your opinion on how you would deal with a child behaving this way.

4. It’s OK for them not to engage with everyone else.

We allow our boys to sit and watch “SpongeBob SquarePants” the entire time we’re there. Right now it’s their thing, and it keeps them engaged in a way only they understand. No, they don’t want to watch the game. Not to mention all the hoopla surrounding watching the game sets them on edge. Someday, I dream they will be interested in football, but today they are not, and I have come to accept that as a possible fact for the rest of my life.

5. Certain foods (like mashed potatoes) taste great with ketchup.

If my son happens to join us at the dinner table, he only eats the mashed potatoes smothered in ketchup. We take our wins where we can get them, and him being at the table is a win. Did I mention the ketchup? Please buy an extra bottle while you’re out shopping, but in case you forget, I will keep my emergency supply in reserves.

6. Pacing is a fact of life and doesn’t hurt anyone.

One of my boys might start to walk around in circles from the kitchen to the living, down the hall and back around the kitchen. This is called stimming, and it’s his way to manage the world around him. It can be soothing for him to do this for up to 30 minutes or more. You may also want to ask us why and when does he does this. I have loads of answers for you, so let’s discuss them over a beverage.

7. Exercise can be a great, calming activity for my boys.

If you have a trampoline in the yard, this could be used as a very good heavy movement tool for the boys to enjoy. My oldest has been known to jump for up to four hours nonstop. He will tolerate a few additional jumpers as long as they don’t interlope on his activity. These kinds of activities can actually calm him down for hours afterward.

8. Headphones and earplugs aren’t signs of rudeness.

My boys don’t take off their headphones the entire time they are there. They listen to lots of things and sometimes nothing at all, but by having the headphones on, they are able to moderate the volume of sound emanating around them. This helps keep them grounded and balanced.

9. We’re not being rude if we leave early.

If we need to leave early or one of us heads back to the hotel with the boys, we’re trying to be considerate of you and also keep an eye out for their wellbeing. They can really only handle so much of the chaos going on around them. Chaos can be defined as people talking in groups with several conversations going on at the same time, kids screaming and playing tag in the backyard and the general festivities that happen when families get together just a few times a year. Don’t try to keep things down on our account. We knew what we were getting into when we came, and we’ll go with it.

10. Don’t judge, just accept. And talk to our kiddos.

Don’t judge us, don’t belittle our parenting choices and don’t give us your opinion of how or what we’re doing with our kids. Don’t parent our kids for us when we’re around. Just accept us and accept we are here with you, and we’ll be excited and happy to come back again.

Do engage with our kiddos, ask kindly worded questions about behaviors you notice with our kids and take steps to understand a little of what our lives are like. There are some great blogs, Facebook pages and books that share a little about what our lives are like.

With this new understanding, you will help us keep autism awareness alive and growing.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro 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 Kind Woman in the Waiting Room With My 2 Autistic Children

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Dear woman in the doctor’s office waiting room:

I know you saw me. In my yogurt/banana/snot-stained shirt, chasing my 2-year-old around as he climbed on everything and everyone (from chairs to decorations to unplugging the Christmas tree).

You heard me apologize and explain that my double stroller doesn’t fit in the treatment rooms, so the single stroller had to do, and only one child could be contained at a time.

You saw me desperately drain my phone’s battery playing “Curious George” to try to keep my kids appeased. You saw me switch up who remained in the stroller. You saw me then try and keep my 3-year-old from biting patients. From knocking the magazines off the table over and over again. From hurting himself as he stumbled around.

woman in waiting room playing with autistic child

Then, as he climbed and flipped over the arm of the couch, half on, half off — I saw you rub his back. I saw you play with his feet and make them “bicycle.”

I saw him calm, smiling. I saw you take his hand and walk with him. Hug him. Talk to him gently. I saw this as I desperately rolled the stroller around the room to keep my 2-year-old from screaming and melting down.

I smiled and thanked you. I made sure you knew he could bite. You were unfazed as you hugged my drooling and pinching toddler happily, making him laugh. As we were called back (after an hour-long wait), I thanked you so dearly and sincerely and let you know that you’re amazing. Then I saw you put your hand on my shoulder and say, “You are amazing.”

I felt the tears come from my eyes as I felt genuinely accepted and appreciated and loved by a complete stranger. I never even got your name. But you will never know the impact your kindness has made on this mother of two autistic children. Instead of the usual dirty looks and judgment, I got understanding and kindness — a rare thing in public when you have nonverbal autistic children. You understood. You didn’t ask what was wrong with them. It didn’t matter. You saw that you could help, and you did.

If there were more people like you in this world, it would most certainly be a brighter place. I thank God for you, and I know there are angels out there among us. Thank you.

Sincerely,

A mom who has never felt more accepted and understood

Follow this journey on Emily’s Army.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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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