What I Want My Child to Know When His Meltdown Is Over

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To my beautiful boy,

You look so peaceful curled up in your bed tonight, little man. It’s like the events of the day have washed over you with no ill effects at all. Your face shows no sign of the meltdown you endured earlier in the day. But as I stand here watching you dream, I can’t help but relive the afternoon’s events over and over in my mind. Could I have done more to help you? Could I have avoided it from happening?

I am exhausted, but peaceful sleep won’t come for me tonight. My mind was whirring around as I wrestled with my thoughts, so I find myself here, having crept into your room on tiptoes so as not to wake you. Peering over your bed and wishing I could tell you how I feel.

You’re so precious to me, my beautiful boy. I love you more than you will ever know. I wish I could make things easier for you because the world is just too much for you sometimes.

And today the meltdown fog took you away from me. I wish it was me in your place. I hate seeing you lost in yourself like that.

I saw the fog approaching you, and I wanted to scream to it to leave you alone. Please stay here with me, my son, and let me make it better for you. I’m your mom, and I’m here to help you through it; that’s what moms do. But I could see the panic in your face as you struggled to catch your breath. I could see the fear in your eyes as it began to engulf your body, swallowing you like a predator. I felt so helpless because deep down I knew this had to happen. Your body was saturated and overloaded with stress, and it had to come out somehow.

Every nerve in my body was telling me to scoop you up, but my motherly instincts were so wrong because my very touch was painful to you and made you pull away from me all the more. My heart broke because I felt like I was making things worse. I felt so helpless as the fear and rage swept over you. As I watched helpless, I saw my own panic reflected in your teary eyes, and I didn’t know what to do. I hate feeling like that. It’s meant to be my job to protect you, my beautiful boy.

I tried to tell you it would all be all right, but you couldn’t hear me. The meltdown fog had blurred your senses, and the world around you was gone. I could feel my heartbeat pounding as I tried to stay calm and keep you safe from yourself.

I know you don’t mean to hurt anyone when you lash out. It’s not really you, so I take the hit as doors slam and chairs fly. All I could do was let it take its course, which pained me to my core.

And then eventually you became quiet. You rocked slowly, and I knew this was your way of calming yourself, before you slid  down the wall in a heap on the floor. You slowly unravelled every muscle of your body, and there you were.

My beautiful 11-year-old little boy, so vulnerable and raw.

I could feel your whole body sigh as the exhaustion set in. And I wanted to cry, but I fought the tears back. Holding my breath, I waited for a sign that you were ready for me to enter your world once more. Your eyes slowly opened and looked at me. My knees gave way, and I crawled toward you, reaching out gently to touch your hand.

Your eyes closed at my contact, and I knew you were with me once more. I needed to hug you, to release all my adrenaline, too, as I suddenly realized how exhausted I was. So there we lay on the floor, my hand on yours. I have no idea how long we remained like that. But that touch was so precious to me that I never wanted it to end.

And as I lay there, I realized something. You never really left me because when you’re swamped in that fog, I feel everything with you. You and I are so in tune that I feel every fear, every anxiety, every scream and every feeling of pain you inflict on yourself. I feel it, too.

Do you know you’re not alone, my angel? I know you may not say it, but deep down I know you feel it because with me you’re truly yourself. It’s safe to unravel when you are with me. And I want you to know I will be here — no matter how thick the fog gets, I will be there by your side all the way, waiting for you to find you way though.

As I watch you here sleeping in the darkness, my love overflows, and the tears drip down my cheek.

I kiss your forehead and whisper to you how proud I am of you. I may not be able to stop the fog from coming all the time, and I can’t make the world a less confusing place for you always, but I know it’s going to be OK because I love you to the moon and back, and I’m here for you — always right by your side.

And that’s what we really need to know. 

The future remains uncertain, but right here, right now, all that really matters is us. And we’re in this together, always and forever.

Goodnight, my darling boy. Sweet dreams.

Follow this journey on A Slice of Autism.

The Mighty is asking the following: Write a letter to someone special in your life. What do you wish he or she knew? How has he or she made a difference? 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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19 Hilarious Food Requests Autism Parents Hear on Thanksgiving

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For parents of children with autism, keeping your kid fed can often be difficult. Keeping them fed around the holidays, however, is a task that comes with its own unique challenges.

Because of sensory issues, Kids on the spectrum can sometimes have seemingly peculiar eating habits and texture preferences. This can often make it a little difficult for parents to find a wide variety of food their kids will eat.

We asked parents of children with autism to share with us some of the most unusual, outrageous or funny food requests they’ve received from their kids at Thanksgiving.

These were their answers: 

1. “Plain (of course) turkey and cheese sub from Subway. That counts, right? It’s turkey!” — Melissa Kidwell

Photo of sandwich with meme: Plain (of course) turkey and cheese sub from Subway. That counts, right? It's turkey!"

2. “One year I was quickly making mashed sweet potatoes with spices, brown sugar and what I thought was vanilla. Oops, it was green food coloring. When my daughter saw it, instead of refusing the green dish, she took some, adding, “I’ve never had slime before.” Every year she asks for slime!” — Jenifer Lapp McAllister

3. “Pancakes and cucumbers.” — Trissa Durastanti Carter

4. “For every holiday, everyone knows my son will only eat dill pickles so they stock up so he is able to fill up.” — Gail Bloker Sinram

Meme: "For every holiday, everyone knows my son will only eat dill pickles so they stock up so he is able to fill up."

5. “Butt rolls. The rolls you buy pre-made that look like butts.” — Stephanie France Fry

6. “My kid’s favorite thing is bread with ketchup. Not ketchup sandwiches, bread with ketchup. And has to be lumberjack bread. Never biscuits. Never, ever mashed potatoes. Over the years we’ve been able to get him to accept ham and avoid the bread with ketchup with the family, but soon as we get home, that’s his snack — six pieces of bread, ketchup in between two slices each. We love our boy.” — Amber Dixon

7. “A bowl full of cranberry sauce. Nothing else.” — Erin Howell Sharpe

Meme of cranberry sauce: A bowl full of cranberry sauce. Nothing else."

8. “Chinese food and pizza. It’s what she has every year. She hates turkey and all the other stuff. So, she gets chicken teriyaki on a stick, lo mein and a small pizza with breaded chicken and alfredo sauce from Pizza Hut every Thanksgiving while the family eats turkey and such.” — Lynn Major

9. “Doritos and whipped cream.” — Jennifer Carole Underwood

10. “My son was obsessed with ‘Charlie Brown Thanksgiving’ — reading the book and watching the movie. He wanted their Thanksgiving meal, but he won’t eat popcorn or jelly beans so all he wanted was buttered toast like Snoopy. He was ecstatic when we gave him a plate of toast while the rest of us ate a full Thanksgiving spread.” — Rachel Frederick Hall

Meme of toast: "My son was obsessed with 'Charlie Brown Thanksgiving' -- reading the book and watching the movie. He wanted their Thanksgiving meal, but he won't eat popcorn or jelly beans so all he wanted was buttered toast like Snoopy. He was ecstatic when we gave him a plate of toast while the rest of us ate a full Thanksgiving spread."

11. “Gummy bears and mashed potatoes.” — Lisa Kasprzak Smith

12. “Let’s be real we all know we’ll be making nuggets and fries.” — Kristy Lynn

Meme of chicken nuggets and fries: "let's be real we all know we'll be making nuggets and fries."

13. “Chicken with bones and sprinkles.” — Vic Kiec

14. ” A Lunchable or English muffin with one slice of cheese and mayo! Hey, it’s his holiday too, so whatever makes him happy.” — Bonnie Pifer Stepke

15. “[My daughter] will only eat turkey if we refer to it as a ‘big chicken,’ and we let her dip it in Lighthouse blue cheese dressing. There is nothing else on the table she will even consider eating.” — Shari DeCarlo 

 

Meme: My daughter will only eat turkey if we refer to it as a 'big chicken.'

16. “Chicken nuggets dipped in applesauce.” — ScottandNikki Cavenah

17. “Ketchup. In a bowl. With no utensils. We like to keep things simple…” — Megan Orine Campbell

18. “Thanksgiving pizza. Christmas pizza. Easter pizza. Sensing a theme here?” — Susan Levine

pizza meme: "thanksgiving pizza. christmas pizza. easter pizza. sensing a theme here?"pizza meme: "thanksgiving pizza. christmas pizza. easter pizza. sensing a theme here?"

19. “My son stood up on the pew in the middle of our holiday church service (during the quietest part, of course) and screamed, “I want my ham!” I was mortified, but the nice elderly gentleman behind us leaned forward and whispered, “That’s OK, buddy. I want my ham, too!” — Karen Matthews

Ham meme: My son stood up on the pew in the middle of our holiday church service and screamed, 'I want my ham!' I was mortified, but the nice elderly gentleman behind us leaned forward and whispered, 'That's OK, buddy. I want my ham too!'

*Answers have been edited and shortened. 

Related: 30 Autism Parents Describe Their Kids’ Bizarre and Funny Eating Habits

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Mom’s Comic Strips Show the Lovable Quirks of Her Son With Autism

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One mom has found a creative method of spreading awareness… and also some joy along the way.

Lisa Smith, from Baldwin City, Kansas, started making comic strips online just three months ago. Feeling inspired by the day-to-day things her kids do, as well as sensing another opportunity to raise awareness about her kids’ challenges, Smith began making more and more of the sketches, to the delight of her Facebook and blog followers.

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Smiths’s youngest two children,Tate and Sydney, are the stars of the comics featured on their mom’s blog “Quirks and Chaos.” Tate, 14, has autism, and Sydney, 11, has Fetal Alcohol syndrome and ADHD. The Smith family adopted Sydney when she was 10 months old and she was diagnosed at age 2.

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Tate and Sydney Smith

The comics often center around the funny things Smith’s children say and their unique perspectives on life. Several of them, like the one below, address Tate’s literal interpretation of things.

Pixton_Comic_A_Baby_Shower_by_Lisa_G_Smith

Pixton_Comic_Running_to_the_Store_by_Lisa_G_Smith

“For me it’s always about educating others,” Smith told The Mighty. “A lot of the ones I do about Tate are about how I think he perceives the world. If [other people] understood more about what he’s thinking they’d be able to relate to him so much better.”

Pixton_Comic_Cooking_Up_A_Storm_by_Lisa_G_Smith

Smith says that being able to find the humor in things has helped her cope with the challenges of her children’s diagnoses.

“What helps me the most to stay out of the doom and gloom is finding the little bits of joy and the funny experiences and the sweet things that the kids do,” Smith told The Mighty. “It helps to have a sense of humor, but I really don’t want to come across as somebody who is laughing at them in a way that’s mocking, because I’m not.”

Pixton_Comic_There_is_no_ham_in_hamburgers_by_Lisa_G_Smith

To see more of Smith’s comics, including ones she’s made for her daughter, visit her blog or Facebook page.

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New Jersey Mandates Special Needs Training for School Bus Drivers and Aides

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New Jersey has a new law requiring special needs training for school bus drivers and aides.

The bill was signed into law by New Jersey Governor Chris Christie on Nov. 9, according to Autism New Jersey, the organization that supported the legislation and urged the governor to sign it. Training for bus drivers and aides will include “appropriate behavior management, effective communication, use and operation of adaptive equipment and understanding behaviors that may be related to specific disabilities,” according to the New Jersey State Legislature.

The law also includes the requirement that, with parental consent, school districts must provide student information cards assigned to each student for bus drivers and aides.

Children with special needs require specialized attention and care. Bus drivers and aides should be aware of behaviors associated with certain disabilities, and know how to effectively deal with them so to avoid any confusion and accidental mistreatment of these students,” Assemblyman Dan Benson, who sponsored the bill, said, according to Autism New Jersey. “It makes their job easier and ensures that these students are being treated with the respect they deserve.”

The law goes into effect immediately, but the details of the trainings, including when they will begin, will be determined by the Department of Education.

“It’s encouraging to see the legislature and administration making individuals with autism a priority,” Suzanne Buchanan, Executive Director of Autism New Jersey, told The Mighty in an email. “We look forward to continuing this momentum with them to address other critical needs.”

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To the People Who Say Autism Is ‘Merely a Label’

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I struggled to make the decision whether or not to be open about being diagnosed with autism. Not one to do things by half, in the end I decided to write a very personal piece for a British national newspaper on the specific difficulties of being female and on the spectrum. The piece was shared thousands of times on Facebook and Twitter and picked up by news outlets as far away as Australia.

I’ve learned a lot this week since going public.

I’ve discovered that most people are kind, compassionate and interested in finding out more. I’ve learned that once you open up, others do the same, and that many of us have issues we would like to talk about but can’t quite work out how to start.

I am genuinely proud I have begun the conversation and appreciative of the thousands of messages I have received. Mainly they have been from people offering support, asking for help for their issues or telling their own, often similar stories. I am grateful for every single one of them.

But I have also discovered something else. I have learned there are a few people who feel it is their right to tell you how your diagnosis is unhelpful, meaningless, an affectation, nonsense or merely something fashionable.

They are a tiny minority, but I am human, so the negative comments touch me more deeply than the positive.

These people say autism is merely a label. They advise forgetting you’ve been given life-changing information and suggest instead pretending it never happened and just to get on with the day-to-day. They imply finding a professional to explain why you struggle in certain areas is attention-seeking behavior, and they become angry that you want to help others in a similar situation.

This is what I want to say to those people.

My “label” doesn’t define me. It reassures me. It tells me I am not failing but instead should celebrate my achievements because they are hard won.

It is a vindication. It gives me the answers I have been searching out since I was young. It tells me my struggles aren’t my fault, and it gives me the courage to keep working to overcome them.

Wearing a Prada coat is making a fashion statement; telling people you are autistic is not.

My doctor went through years of medical school to gain her qualifications. She has then gone on to become a consultant and to spend her life specializing in autism. When you question my diagnosis, it is disparaging to her, a doctor who has dedicated her life to helping people like me. She is an expert. You are not.

Now that I have a diagnosis, I have specialist help, which would have been impossible to access otherwise. I’ve tried therapy before; it hasn’t worked. Now I see an amazing doctor who understands me at the deepest level and who has helped me be myself in a way I never dreamed possible.

Most of all, though, my label has given me an open invitation to join a community of generous, funny, warm and welcoming people who, like me, are autistic. These people support each other through the long, dark nights when fear grips and morning seems days away.

They are also people who will celebrate with you every success however tiny, who will give you their knowledge, their advice and their compassion. These people are important to me, and without my “label,” I never would have found them. 

Questioning someone’s diagnosis is invalidating to each and every autistic person, and it discourages the yet-to-be-diagnosed from seeking the help they deserve.

So I would like to ask that you please take a deep breath before you hit the keyboard and think hard about the impact your comment may have.

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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When I Was Warned About Teaching Boys With Autism

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“Get ready! Are you sure you’re up for this? Do your doors lock? They bite, they scratch, they spit. Good luck getting help from home.”

Seven years ago, I took a teaching job at a school in my hometown. My job was to develop an autism classroom, primarily put into place because of two little boys. Twins. “Wild.” Both with autism, both nonverbal, both hyperactive.

That is what I remember most about beginning my career with Nehemiah and Jeremiah. These were not children preceded with, “Oh! You are going to love them. They are so sweet, they are so funny.” Instead I was told, “Get ready! Are you sure you’re up for this? Do your doors lock? They bite, they scratch, they spit. Good luck getting help from home.”

So I prepared. I had alarms put on the doors and arranged furniture to make it harder to escape. I removed staplers and picture frames and anything breakable from reach. I researched and planned.

What I could not have prepared for was how these two little boys would change my heart. How much better I would become because of them.

It wasn’t a job for the faint of heart. I was bitten, I was scratched, I had countless breakouts of ringworm. I went home exhausted, without lunch, every day. I wore no jewelry and most days put my hair in a ponytail so it couldn’t be yanked on. I rearranged my class 15 times. I called on our OT and SLPs constantly for assistance and suggestions.

And I loved. Almost immediately I fell in love with the mischievous grins on these two little faces. I learned to dance to the music Jeremiah hummed and rhythms Nehemiah drummed. I learned to advocate for them — to fight for their opportunity to eat lunch in the lunchroom, go to PE with other classes and attend music and assemblies.

I wanted so badly for my boys to experience the sense of community I knew they deserved. To walk down the hall and have other teachers and students tell them, “Hello!” For people to realize when they were absent. And it did happen. Students began to ask questions, and teachers began to invite us to their classrooms for fun activities. Third-graders began asking their teachers to come read to my students. And I saw these two boys become loved.

After three years, it was time for me to move on, and I agonized over the decision to leave Nehemiah and Jeremiah. I had three other students I loved as well, but they would be fine. They had support systems. Their families had support systems. But what about my boys? Would another teacher love them the same? Would another teacher be able to build a rapport with their mom? Would she worry over them in the summer, and make sure they had groceries or bed sheets?

In the three and a half years since I left them, I’ve had opportunities to visit. I had chances to speak with their teachers and therapists and keep up with their progress. And I’ve talked about them constantly. I tell stories of the funny, sad and frustrating things they would do. When I close my eyes, I see Nehemiah looking at me with his head cocked, one eye open, one eye closed and his finger on the side of his nose. I see Jeremiah rocking back and forth, quietly humming whatever song we sang in our morning meeting. I hear their giggles and see their smiles. I can still feel the chokehold-grip of their precious hugs.

And then one morning, I woke up to learn my boys are no longer with us on Earth. They passed away recently. My heart shattered, and my tears seemed endless. But my initial despair was my fear that no one would mourn them or truly miss them like I would. But then my phone started ringing, and text messages began coming in. Teachers I worked with checking on me, crying with me and mourning the loss of two precious boys who made a difference. The lives of Nehemiah and Jeremiah mattered. They taught the teachers and students around them about acceptance. They taught us that everyone is lovable. My heart is so comforted in knowing that these boys will be mourned and missed. And remembered.

When I read paperwork for new students and feel the undercurrent of warnings like the ones I received for Nehemiah and Jeremiah, I make sure to open my heart extra wide for them. When a student comes into my classroom, no matter how difficult, I look for something in their personality that is lovable.

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