3 Things That Help Me as an Adult Who Experiences Shutdowns

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After reading an article on what helps children with autism during shutdowns, I thought I’d write about my own experience as an adult who still has shutdowns.

First off, what is a shutdown? Here’s my definition: A shutdown occurs when someone is experiencing sensory overload and snaps into their own world and out of reality. When I shut down, it can occur for different lengths of time and with different severities.

I’m blessed my fiancé, Traci, understands my shutdowns, knows what to do and knows why they may be happening. This is so helpful as an adult on the autism spectrum. So let’s go into what helps me as I am shutting down.

1. If you know me well, you’ll see me start to get quiet and anxious. My body just kind of freezes, and my mind starts to take myself out of reality. When this happens, please ask me if I would like to go outside. This will take me out of that mindset for a moment and help me realize where I am. I need to get out, and without you, I can’t get myself out. During my student orientation at college this summer, everyone was talking too loudly, and I started to shut down. My fiancé asked if I would like to go outside, which helped.

2. If noise is an issue and I can’t excuse myself from the situation, my fiancé might help me hold my ears or take out my ear plugs, anything to help simmer the noise down. If I am overheating — I’m hypersensitive to temperature, too — she will get water for me or soak a towel to help me cool off.

3. If I have already shut down, just be there. Knowing you are there helps. If you can alert me without grabbing me, that’s even better. Allow me to relax during the sensory overload. Sometimes it may be a few minutes, and other times it might be an hour.

ShutdownsAA
Graphic designed by Catherine Contillo

Things to remember not to do:

1. Don’t touch me. Don’t try to rub my back. Don’t try to hold my hands. Just please don’t touch me. Being overloaded already heightens the touches and just makes it worse.

2. Don’t make me feel like a bother. Don’t make me feel alone. Just don’t.

My advice for adults on the autism spectrum who experience shutdowns? Get to know yourself. Find out what triggers your own shutdowns. For me it’s loud noises, so I don’t usually attend parties or go to Fourth of July events. And I always bring ear plugs with me because loud noises can happen anywhere unexpectedly.

I would also suggest talking to those close to you. My close friends understand me and my quirks to an extent. The number one thing my friends know is if I tap them on the shoulder, I need to get away from where we are. The nonverbal cues are the most important because as adults on the spectrum, we know being verbal during a shutdown can be quite hard. Make sure those close to you understand your main triggers. Maybe they’ll see what’s happening before it happens. Figure out what works for you because no matter what that is, it will help you in every situation.

Lead photo source: Thinkstock Images

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Why I’m Telling Something I’ve Never Told Before to Any Kid Living With OCD

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Dear friend,

I’m writing to you not from a place, but from a point in time — a zone, if you will — that I had no idea I could reach: a zone of calmness and peace. You see, I too had constant thoughts I didn’t and couldn’t understand; nasty thoughts that seemed to be transmitted into my brain by some heinous monster. I too felt the weight of anxiety on my chest squeezing the air out of my lungs. I too felt the fear of the illogical, yet terrifying obsessions that make us yearn for some type of control. I too carried that inconceivable weight upon my shoulders and I carried it alone for the longest time. I too have obsessive compulsive disorder.

Upfront I want to tell you this letter’s purpose is not to say it goes away with time —because it doesn’t. But what I will say is this: It can get better. You deserve better, but the only way to do it is by speaking up. You can’t do it alone.

I know your thoughts are frightening. I know they’re sometimes crippling. I know they’re not yours and you don’t want them, but they’re there and you have to deal with them. This is why I’m writing to you right now, friend. I want you to deal with them. I need you to take the first step; the first step I should have taken earlier in my life.

Let me take your first step with you, because no one should do it alone. You, my friend, will seek out help — whether you choose professional help, or simply letting someone in your family know the truth, that is your choice. But in joining you, I’m taking another first step in my life, which is something I’ve been putting off for 23 years: I will be completely open about my irrational fears and I will share them with you and any curious eye.

These are all things I’ve never told anyone out of fear or embarrassment:

  • As a kid, I would avoid knives out of fear of spontaneously stabbing someone.
  • I would skip in place at the mall to ward off intrusive thoughts, breathing in when I saw a woman, and breathing out when I saw a man. I would hold my breath in between.
  • I washed my hands whenever someone I didn’t like touched me out of fear that I would become more like them.
  • I washed my hands so often that as a consequence, the skin from my palms would shed like snakeskin.
  • Sometimes I would spend about 10 minutes staring at my car, walking away only to be pulled back to it repeatedly by the need to check if I let the lights on or if I left the doors unlocked. Some days I would check all of the lights and all of the doors four or five times each.
  • One time I spent four hours trying to cook a simple meal (Chicken and rice with beans on the side). I had to wash and disinfect everything multiple times between uses. I was scared I would get salmonella or give it to someone else. 
  • I feared someone would break into my house and hurt my mother, sister and father if I didn’t check if the door was locked seven times before going to bed.
  • Some nights I would have to get out of bed after being all snug and comfy and ready to sleep to go wash my hands in order to ward off intrusive thoughts.
  • Sometimes, when the anxiety would be too much, I would stare at myself in the bathroom mirror and pull my hair. 
  • I would avoid dogs and cats out of fear I would harm them in any way.
  • I would avoid children for the same reason.
  • I would do all of these things in secrecy and full of shame.

I’ve gotten over most, if not all of these irrational fears and compulsions. Even on bad days when I’m mentally exhausted or agonizingly anxious, I still find the strength to let those intrusive thoughts be what they are: thoughts. I have them, and then I let them go. But I couldn’t have gotten here without the help of psychologists, medicine and my beautiful family.

I’m done with hiding out of fear of humiliation. I’m done with the taboo around mental health. But most importantly, I’m done pretending I don’t have OCD out of fear of making those around me uncomfortable.

Let’s stop pretending together. Please take that first step. Don’t do it for me, do it for those you love. Most importantly, do it for yourself.

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Autism Enters the Conversation at the Second Republican Presidential Debate

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Autism entered the conversation at the second Republican presidential debate on Wednesday, September 16, at the Ronald Reagan Library in Simi Valley, California.

After about two and a half hours of debate, moderator Jake Tapper asked presidential candidate Dr. Ben Carson, a pediatric neurosurgeon, whether or not fellow presidential candidate Donald Trump should stop publicly claiming that childhood vaccines are linked to autism, according to a New York Times transcript of the debate.

Dr. Carson responded by saying that numerous studies have failed to demonstrate any correlation between vaccinations and autism, then attempted to move the conversation in the direction of big government.

When Tapper again prompted, “Should he (Trump) stop saying it? Should he stop saying that vaccines cause autism?” Carson responded with, “I’ve just explained it to him. He can read about it if he wants to. I think he’s an intelligent man and will make the correct decision after getting the real facts.”

See the interaction in the video below:

Trump responded with the following:

Autism has become an epidemic. Twenty-five years ago, 35 years ago, you look at the statistics, not even close. It has gotten totally out of control. I am totally in favor of vaccines. But I want smaller doses over a longer period of time. Because you take a baby in — and I’ve seen it — and I’ve seen it, and I had my children taken care of over a long period of time, over a two or three year period of time. Same exact amount, but you take this little beautiful baby, and you pump — I mean, it looks just like it’s meant for a horse, not for a child, and we’ve had so many instances, people that work for me.

Just the other day, two years old, two and a half years old, a child, a beautiful child went to have the vaccine, and came back, and a week later got a tremendous fever, got very, very sick, now is autistic.

I only say it’s not — I’m in favor of vaccines, do them over a longer period of time, same amount. But just in — in little sections. I think — and I think you’re going to have — I think you’re going to see a big impact on autism.

Dr. Carson responded by saying, “The fact of the matter is that we have extremely well documented proof that there is no autism associated with vaccination, but it is true that we are probably giving way too many in too short of a time and a lot of pediatricians now recognize that and I think are cutting down on the number and the proximity in which those are done.”

After the debate, Autism Speaks released the following statement:

The issue of autism took center stage during last night’s Republican presidential debate, and it must remain at the forefront of the national dialogue. There are millions of Americans affected by autism, many of whom are in need of better treatments, supports and services, and deserve more research on the cause of autism. Our elected officials must take action on behalf of them. We need a national plan that addresses the needs of people affected by autism across the entire lifespan.

As for the issue of vaccines, over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism. The results of this research are clear: Vaccines do not cause autism.

Go here for a full transcript of the debate. 

What’s your take on this discussion of autism? Let us know in the comments below.

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Police Officers Escort Daughter of Fallen Cop to Father-Daughter Dance

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Jewel Warren, 8, lost her father, Memphis, Tennessee, police officer Tim Warren, when he was shot and killed in the line of duty in 2011, according to a post on the Memphis Police Department Facebook page.

When Jewel recently received an invitation to attend a father-daughter dance at her school, she was saddened by the letter. Her mother, Taylor Amen, spoke with Donna Kirk, founder of Our Fallen Heroes Foundation, and they began reaching out to officers from Warren’s department looking for an escort.

Many officers jumped at the opportunity. Because of space was limitations, six were chosen to escort Jewel to her dance, Yahoo Parenting reported. There’s already a wait list for which officers get to take her to the next dance.

 

On Friday, September 4, the community came together to make it a night Jewel will never forget — local florists donated boutonnieres, a corsage and roses for the officers to give Jewel, a photographer donated her time to capture the special night and Jewel arrived in style to the dance by taking a ride in a classic 1972 Cutlass Supreme, according to a post on the Memphis Police Department Facebook page.

 

We know we cannot replace Tim, but we can be there for his family when we are needed,” Said officer Amen, according to the Facebook post. “It was truly a honor.”

 

h/t Reddit Uplifting

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To the Soccer Coach Who Stepped Up in a Big Way for My Son With Autism

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Dear Coach C,

As my son Ben’s first soccer season draws to an end, I wanted to take a moment to write this to you. I know I said thank you today on the field, but I also know those two simple words cannot convey just exactly how grateful my family is to you.

There are not many people would volunteer their time to coach 4- and 5-year-old soccer on a Saturday. I know this because of the multiple emails I received pleading for coaches for the league. If I’d had the slightest clue how to play soccer beyond “don’t touch the ball,” I would have helped. But you stepped up in a big way.

I know for many parents, soccer is one of many sports and activities their child participates in. For us, deciding to put Ben in a regular soccer league was a really big deal, and we didn’t make the decision lightly. For you see, we’ve tried other sports and watched them not work out well. Like the karate class where Ben spent almost the entire time in the penalty box because he would not “focus.” Or gyms that were too noisy, too confusing, too…much. So after careful research, we chose a soccer league that emphasized sportsmanship over competition — a league where everyone gets a trophy — and we held our breaths and hoped for the best.

So when I approached you on that first day and told you my little boy is autistic and may not look you in the eyes or always focus on the game, I fully expected to see an expression of panic on your face. I would’ve understood if you glanced for the nearest exit. I would’ve even understood if you had said, “Autism? I’m just a volunteer and I don’t think I am equipped to handle your son.” But you did none of those things. Instead, you gave me a reassuring smile and you told me he would be fine, and I knew immediately you weren’t patronizing me. I felt the confidence in your voice, and a glimmer of hope grew inside me. For the first time, I let myself believe that this could actually work. And then, you gave my son a jersey, and he suddenly he was a soccer player. Number nine. I know no one else felt it, but a momentous shift happened in that moment. My little guy who prefers his world of solitude was now part of a team.

Coach C’s soccer team doing a team cheer

Watching you with the children each week was just magic. Your positive energy was infectious, and even the most reluctant child was drawn to your energy. When my son would wander away from the field or in front of another player during drills, you never showed an ounce of impatience or exasperation. You guided him to where he needed to be. You talked him through what was going on in the game. You even adapted some soccer drills along the way to meet his needs. When Ben had the idea to knock down the cones with the ball, everybody took turns doing it. When Ben lost interest kicking the ball to a team member, you became his teammate until he was ready to join the group again. And you did all this with a smile.

Because of you, on soccer Saturdays he would wake excited to get on the field, and when he saw your bright red shirt, he’d run to you, yelling, “I’m here, Coach!” He got to feel the thrill of a game well played. He got to bask in the glow of applause from the crowd. He learned how to huddle up with his teammates and do a team cheer, “Go Cheetahs!” He got to slap the hands of the other team at the end and tell them, “Good game!”

During the games, it was hard for Ben to keep his focus on running after the ball, but you never lost sight of him. You always made sure he had equal turns to play. I watched as you made sure he had his turn to kick the ball in. I saw how you took the time to listen to him as he told you he was an airplane and joined his world by looking up to the sky, too.

I was touched when, on the tournament day, you made sure to say something personal to each child. You called Ben your “most enthusiastic player” with a great deal of heart. We all laughed together when you told the team they had grown so much this year, to which Ben piped up, “Even me!” Your example of acceptance to Ben’s unique soccer style paved the way for his teammates to accept him, too. I know that Ben has grown so much because of you, but the example you set for those other children will be lessons they take with them in the future about accepting differences in others and finding the strengths in everyone.

A simple thank you isn’t enough to convey our gratitude for the gift you have given him. Ben has regained his faith in the world of sports, and I know this will pave the way for him to try more in the future. I hope our paths will cross again, on the field or elsewhere, but I know one thing for sure. I believe God puts people in our lives in the moments when we need them, and he brought you to us. Thank you from the bottom of our hearts!

Love,

Jessica, Nick, and Ben

The Mighty is asking its readers the following: Describe a moment you gave or received a gift that touched your life in a special way. 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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The Challenge I Gave the Classmates of My Son With Epilepsy

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Some of the faces in the crowd were familiar to me, though having lost a little of early childhood’s pudginess. Fifth graders scooted in around me as I sat at the front of the room. I’d been invited to talk to my son Calvin’s classmates about him and about epilepsy, as I do every year for a handful of teachers who’ll have me.

I always start by telling them Calvin was born prematurely and missing a section of his brain — some of its white matter, its superhighway — and as a result it takes Calvin a long, long time to learn things and some things he may never learn. I told them he’s visually impaired, can’t talk, doesn’t walk well and still wears diapers. I explained that when he was 2 he was diagnosed with epilepsy. Then I asked if any of them knew what epilepsy was. A cute boy at the edge of the group raised his hand.

“It’s when your brain has seizures and you have to take medication to stop them.”

His answer hinted that he knew someone or perhaps had a pet with the disorder.

I went on to explain what seizures are, how several kinds exist and how some seizures can cause one to lose consciousness. I told them in some people, the medications don’t always completely control seizures but how folks still have to take the drugs and experience their side effects. I mentioned how the cannabis oil I’m making, which comes from a plant, seems to be helping Calvin safely come off one of his addictive, debilitating and harmful drugs. I ended my intro by saying Calvin is the best person I know. Then I asked them why they supposed I felt that way:

Because he’s your child?

Because he’s happy?

Because he’s nice?

I praised their answers and told them Calvin is the best person I know because he doesn’t have a mean bone in his body; he’s pure. I noted that I had one more important thing to say at the end of the session before I opened up the floor for questions.

“You can ask me anything about Calvin and about epilepsy,” I said, assuring them no question was out of bounds. After a short pause, the first hand went up from a pretty girl with long brown hair.

“Are all people with epilepsy like Calvin?”

I thanked her for the important reminder that, no, most people with epilepsy are not like Calvin, though a lot of people like him have epilepsy. I explained how it’s difficult to tell if someone has epilepsy unless you witness a seizure or you’re told. The boy who knew what epilepsy is raised his hand high.

“I have epilepsy,” he said, standing brave and sure beside his desk.

I was careful not to pry, instead channeling his courageous energy, underscoring how most people with epilepsy are smart and able to do the same things their peers can do. Then more questions began to flow:

How long is the longest seizure Calvin ever had?

How does Calvin communicate with you?

Can Calvin play any games?

What are his favorite things to do?

What medications does he take?

Do you know what his different sounds mean?

Will he outgrow his epilepsy?

Can Calvin recognize himself in a mirror?

Does Calvin sleep in a special bed?

Does Calvin’s body hurt after a seizure?

They looked sad when I told them Calvin’s longest single seizure lasted 45 minutes and the emergency drugs didn’t seem to be working. I told them that one time, while in the hospital when he was tiny, Calvin had scores of little seizures over the course of hours and the doctors didn’t know they were seizures but I eventually realized that they were. I assured them doctors don’t always know everything. I explained the words advocacy and paradoxical and convulsion. I talked about how Calvin doesn’t feel good after seizures and, finally, that he’d said the word Mama once, before the seizures and the taking of drugs began.

When there was a brief lull, one boy raised his hand and asked what I’d been saving to tell them.

I gently challenged them all to be an example for their peers by showing kindness and compassion to Calvin and by being his friend. I encouraged them to be kind to others who might look different, sound different, act different, dress different, speak a different language or come from a different country, because all of us have the same heart, and that by doing so, they can make the world a better place.

As I left the room, the children thanked me, and a freckled girl with a bob of ginger hair looked intently into my eyes, smiled sweetly and waved as I pulled the door closed and skipped off to see my Calvin.

This post originally appeared on Calvin’s Story.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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