When My Son With Autism Asked Why a Boy Scouts Troop Excluded Him

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We choose my son. All of him. Where he’s been. Where he’s going. 

It never occurred to me that someone not choosing my son would hurt longer and more deeply than any rejection I have experienced as an individual.

The Boy Scouts motto is, “Be Prepared.” And I wasn’t. Not prepared to receive a voicemail telling me that our son’s troop unfortunately didn’t have the resources to welcome a child like ours, because it wasn’t fair to the other boys. What did he mean? Over 14 months, our son had already skied with this troop, shot rockets with this troop, biked 50 miles in one day with this troop, camped with this troop. But the voicemail on that Tuesday in November said our son wasn’t a good fit.  

We had communicated with the troop from the beginning about our son’s strengths and weaknesses, including his diagnosis of autism. We knew how it challenged his ability to tie knots, pitch a tent, start a fire. We wanted him to grow from where he was to where he wanted to be. What we came to understand, however, was that his kind of autism, with its slow response time, was a challenge for the adults, too, and one they chose not to accept. Perhaps his slower, different way of communicating scared them, annoyed them, embarrassed them, confused them, frustrated them. They finally chose to exclude him, something I didn’t know a scout troop could do. 

“Why don’t they want me, Mom? I already hiked 10 miles in preparation for the hike and no one else had to do that to prove they were ready. I proved it — why are they excluding me? It’s Tuesday and we’re supposed to go on Friday, and I said I would go. Papa is going with me. What did I do wrong? Why won’t they let me go?” These were the questions that came flooding out of a young man who had struggled all his life to answer others’ questions.

This time I was the one who had no answers. I had to confess that I didn’t understand, that his dad and I didn’t believe it was fair and that above all we were so sorry that this happened. No amount of discussion with the troop in the days that followed helped. We had trusted that these scout adults would be kind, friendly, helpful, loyal, trustworthy — just as the scout oath promises; I believe they chose to reject these principals when dealing with our son. Some times people make choices that hurt us. They reject us. 

And so we looked for a troop that wanted our son. We called and asked to set up a meet-and-greet to see if the new troop would be a good fit. And they refused. 

With kindness and friendliness, the scoutmaster explained that his troop didn’t need to meet our child to determine if he was a good fit for them.

They would welcome him unconditionally.

They said they would take him where he was and travel the path of scouts with him as far as he wanted to go, Eagle if that was what he wanted (and he wanted it). They promised to be helpful, loyal and trustworthy. They chose him.

So we learned that life is in the choosing, and that choosing must go both directions.  

As a mother, you can choose to freeze at the moment of your child’s rejection. Or you can choose to go with him through that sad, surprising, disappointing betrayal of hope and trust. When you choose to go through it, there will come a day when it’s where you’ve been, and part of you. But it is not you. Because you have chosen to move on. 

And this summer, four years and five Boy Scout rank advancements later, our son carried out his Eagle project of building benches for the car riders at his K-8 public school. I didn’t want him to do this project because it seemed too big. He had moved on to high school and was really busy working his first job. I tried to talk him into a smaller scale project. But true to form, he persevered.

He reached out to people he has known from every corner of his life. He invited his village:  family, friends, therapists, teachers, caregivers, fellow scouts, church members, karate ka members and neighbors. His hairdresser came. Our church custodian came — more than once.   

As our son welcomed his village to participate in his project, and they chose to help, I have felt my hope and trust in the kindness of people return.

We watched him build much more than benches. We watched him develop self-confidence and earn the respect of so many people. He built community.

This week, our son passed his Eagle Board of Review. He shares that accomplishment with all of us who chose to share our resources and journey with him.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? 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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How an Autism Family Prepares for Thanksgiving

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Oh, the hours of prep work that goes into preparing for a Thanksgiving family feast…

Peeling, cutting, basting, dicing, slicing, baking, mashing, boiling and stuffing.

Not to mention the three-page grocery list, aisle change maneuvering. shopping cart dodging and baking aisle crowd surfing just to get the ingredients you need before even opening your recipe book.

No wonder you’re exhausted before you’ve even turned the oven on.

Now take that prep work and multiply it by (a minimum) of 30 days, 370 hours and 2,592,000 seconds, and you’ve got the amount of time it takes  for an autism family to brace for the Thanksgiving holiday!

An autism family doesn’t just “prepare” for Thanksgiving; we study it, rehearse it, plan it and dissect its every last detail until we’ve exhausted every possible option for potential meltdown or sensory overload.

We plot out our exact location within the house. Bay windows: too bright. Carpet: too scratchy. Kitchen: too smelly. Open doorway: too loud.

Then we stake it out. We arrive extra early to set up camp. Electrical outlet for electronics, check. Curtains or dimmer switches for calming, check. Sound proofing (with headphones on), check.

Next we surveillance it for potential “intruder invasion.” Do the doors and windows lock? Can my child reach the locking mechanism? If he happens to build a grand staircase out of Legos or popsicle sticks, can he somehow get outside? Are there extra light switches, fan cords, hinges or fancy sound systems that could catch his attention? And finally, “Can I afford to replace anything in this room should it end up broken or damaged beyond repair?”

Autism families don’t get up at 4 a.m. to baste the turkey on Thanksgiving morning because chances are we’ve been basting and slow cooking our own “little turkey” since the day after Halloween. Not to mention 4 a.m. would be like sleeping in!

Autism families prepare for the upcoming holiday far beyond just making lists, shopping, cooking and baking. We’ve inserted our turkey timer before the calendar has hit November. We only pray it doesn’t pop before we’ve had the chance to arrive.

So if you invite us over to your house to celebrate, please don’t be offended if we stay in a separate room, our children won’t socialize or we have to leave 20 minutes after arriving. Because just like you we worked hard to try and make the day special. We planned and prepared as much as we possibly could. And we appreciate the invitation more than you know.

Remember the holidays can be hard for our children. Routines are changed, crowds gather and different smells, lights and noises fill the air. But we’re trying. And even if the turkey is dry, the mashed potatoes are lumpy and the dinner rolls are slightly “over browned,” we wont hold it against you because we’re eternally thankful you chose to include us in your holiday celebration.

Autism families don’t just celebrate Thanksgiving one day a year; we give thanks for every minute that lasts a little bit longer.

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To the Mama Who Feels Like She’s Not Enough for Her Autistic Son

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Dear Mama,

I know things might look a little bleak right now, but I want you to know there’s hope. There’s always hope.

I want you to know this because I was once in your shoes, feeling hopeless.

I worried I was failing as a parent.

That I didn’t have what it took to successfully advocate for my son.

That somehow my lack of knowledge and experience would prevent him from living to the potential I knew was buried somewhere in that frantic little body.

That the dire predictions of the educational “experts” who were specialists in their fields would prove to be correct. That I was not strong enough. That I was not patient enough. That I was not enough.

I couldn’t see past the endless days filled with exhaustion, misunderstanding, rejection and marginalization. It consumed me. I began to think I might be the problem since I couldn’t do or be enough for my boy.

But then, sweet mama, someone gave me hope.

Just at a time when I felt that I had nothing left, an incredible older lady at our church, with a grown autistic son of her own, told me I was enough. That my precious boy had been given to the perfect mama for him – one who would love him no matter what, fight for him no matter what and accept him no matter what. She reminded me the most beautiful of butterflies come from awkward-looking caterpillars and that even those caterpillars appear to not be growing or changing when they’re cocooned in their chrysalis. But that period of stasis, that is when the magnificent transformation takes place.

Sweet mama, you’re that guardian of the chrysalis. You’re the one who has cared for your child, nurturing him because the very things which make him awkward somehow make you love him even more. You’ve allowed your child to feel safe enough to create that chrysalis. You’ve tirelessly and relentlessly stood watch over it, protecting your child so he will remain safe enough to transform into the magnificent creature you could see when no one else could.

So, sweet mama, today I want to gift you with hope, just like I was given years ago. There’s always hope. You are enough. Your child is with the perfect mama who will love, cherish and nurture him. These hard days will end. I promise.

There used to be days-on-end where I would sleep, curled up on the floor outside of my son’s bedroom so I’d wake up if he tried to escape from his room – and our home. Endless days filled with public meltdowns, terrifying moments when he ran off despite my death-grip clutch on his little wrist, and countless incidents where I somehow was able to snatch him from physical danger at the last possible second. Years in which other parents avoided me so they would not have to expose their children to my son’s “antics,” in which family members avoided spending time with my son, instead only including his “normal” sister in vacations and outings, in which schools and sports teams would not allow him to participate, stating he was “too much work,” and in which other children ignored the little boy who so desperately wanted to have at least one friend.

But you know what, sweet mama? Although there are still many hard days, things are better. So much better. My son just completed his first quarter of high school – not in a contained classroom but in a regular classroom – with an 88 average, despite the fact that I’d been told he wouldn’t be able to pass remedial classes. He worked for several months to get into shape so he could try out for the high school wrestling team. He made the JV team, despite never being allowed to participate in group sports before. His first match is next weekend, and his mama will be his loudest cheerleader. He’s working on his Eagle Scout project, putting a backstop in our small town’s baseball field so other kids will be able to play baseball even if they aren’t allowed to be part of a team. He’s sought out by young children who love to play with the 6-foot-5 “giant,” knowing he will not only be patient and kind, but that he will also make sure they’re kept safe.

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My previously awkward caterpillar has emerged from his chrysalis and is now starting to unfurl his magnificent wings. I can only imagine how incredible they will truly be when fully extended and he’s able to finally fly.

So, sweet mama, please know there’s hope. There’s always hope.

For you, for your precious child and for the rest of the world to notice and marvel at our incredible butterflies. We’re blessed to have been given the priceless gift of nurturing these souls, so for today, tomorrow and the next day after that, please know you aren’t alone, you are enough and you can do this.

For yourself. For your child. For the world.

Love,

A Hopeful Mama

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Ohio Debuts First-of-Its-Kind Online Program to Help Those With Autism

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The Ohio Center for Autism and Low Incidence (OCALI) has developed an online video course for both families and providers of individuals with autism. It’s the first program of its kind to exist in the U.S., according to a press release from the organization.

The state-funded training course, called “ASD Strategies in Action,” aims to help anyone interacting with someone on the autism spectrum gain a better understanding of the disorder — and specific techniques to help those with it.

Shawn Henry, Executive Director at OCALI wrote: “If we can better equip parents and providers with practical strategies they can use on a daily basis, we can ensure families and individuals have a high quality of life.”

The program is free for Ohio residents; others can pay a subscription fee. The introductory course, “Many Faces of Autism,” helps identify common characteristics and serves to “dispel common misconceptions through the experiences and perspectives of individuals on the autism spectrum,” according to the course website.

The course is then organized by strategy and age range, which covers early childhood to young adulthood. The goal in using an online platform was to allow users to complete the course at their own time and pace but also to give certification to those who complete the work.

I think that’s what parents are dying for — to have their children understood,” Henry told The Dispatch, adding that he hopes the training will help reduce employee turnover at agencies serving children and young adults with autism.

John Martin, director of the Ohio Department of Developmental Disabilities, which helped fund the program, noted that the training is not mandatory for providers, but he hopes that agencies serving people with autism will push for their employees to gain certification.

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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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