To the Waitress at Steak ’n Shake Who Listened to My Son With Autism

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Dear Waitress at the Frankfort (Kentucky) Steak ‘n Shake Who Served Us Saturday Night:

As a waitress in a 24-hour sit-down fast-food restaurant, I’m sure you get a lot of odd requests — especially from harried parents dealing with children in a visually stimulating (black-and-white checkered decor), cold, audibly loud environment. But I have to tell you, you handled our table with grace and calmness that belied the busy dining room.

When we ordered a hotdog for our autistic 9-year-old son, Scott, and explained the mustard must be made in a squiggly line on top of the hotdog — much like one would see on any picture of any hotdog in any children’s book — you didn’t even bat an eye. You had no idea if he’d received a hotdog without mustard or with the mustard not in a squiggling line in such a loud, cold, visually stimulating environment, it would’ve likely caused a meltdown for which there may have been no immediate recovery. You just nodded, smiled, said you understood, and brought us a perfect hotdog. You made sure the milkshake had a cherry and brought him a salad as a side to his kids’ meal, even though that isn’t the norm.

You were a fantastic waitress and we had a meal with no issues. As the mother of a child diagnosed with “autism spectrum disorder manifested by issues in reading and auditory comprehension,  issues in interpersonal relationships, and issues in sensory processing with an above average raw intelligence,” I can assure you — many meals out aren’t handled so smoothly, and many waitresses and waiters truly don’t have any desire to cater to the odd requests of one small family.

When we encounter wait staff like you, we always make sure the tip is padded. I hope you were blessed by that.

We had to eat and run in a hurry. We had a meeting an hour away and only had 45 minutes to get there. We left and were halfway to our meeting when Scott realized he’d left his “Joy” toy on the table.

You have no way of knowing this, but the things that are special to Scott are obsessively special to him. I don’t use the term obsessively lightly.

The author's son, a young boy, holding toys.

Joy is the emotion “joy” from the recent movie, “Inside Out.” We watch the previews about 43,000 times a day. His wish list for his birthday this Friday is the entire set of action figure emotions from the movie. Right now, he only owns Joy and she goes everywhere with him  from bed to bath to table to bike, she’s in his hand or pocket.

There was no meltdown when he realized he’d left Joy. There was more like an “off” button. His entire body deflated, his face completely fell, and he had no emotion whatsoever. We told him we’d stop and purchase a new one. He emotionlessly said he didn’t want another one.

When we left the meeting at nearly 9 that night, we called your restaurant. The woman who answered the phone told us they’d found Joy and had kept her for us. The hour-long drive to your restaurant was probably the longest drive in Scott’s life.

When we took Scott into the restaurant to get Joy, we found out she was given a tour of the kitchen and rode in the pockets of many staff members so she could get as many experiences as possible before we returned to pick her up. When you came to talk to us, you said you had a feeling she was important to Scott, and you knew we’d come back for her.

I can’t come up with words to express my gratitude for the gentle care you gave our son and his lost toy Saturday night. It would’ve been easy to ignore the request for mustard, a salad and a cherry, and just to toss the piece of plastic in the garbage when the table was bussed. But you listened, you heard and you loved him even though you didn’t know him.

I don’t know if you have any idea of the obstacles he’s going to face in his lifetime. We don’t even know. We’re spending his childhood trying to prepare him and teach him coping skills for surviving and thriving in this dark and fallen world. When we receive little bits of light from people like you, it gives us hope for what the future holds.

Thank you for the joy you gave us.

Follow this family’s journey on bridgemanfamily.com.

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 “Share Your Story” page for more about our submission guidelines.

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How a Stranger Helped Calm My Son During His Meltdown in the Hospital

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Shots are no fun for anyone whether you a disability or not. My son, Trenton, who has severe autism, always has to have shots when he gets sick. Unfortunately, he doesn’t like swallowing pills. On this particular day, when Trenton had to have a shot, we experienced something much different than we had before.

It’s always instant tears and a meltdown when he figures out what is going to happen. Nothing can really prepare me for it. Every time it’s the same old story; it takes two nurses and Mommy to hold him down while another nurse gives him the shot.

This time was no different. Trenton screamed his blood-curdling screams. The sweat on his body drenched his clothes in a matter of seconds. His body squirmed all over the place, and we tried our best to hold him down so the nurse could inject his body with the medicine he needed to get over his illness.

It took all of my strength to help hold him down. His tears and screams broke my heart. It’s not only physically hard but mentally hard as well. If only he would swallow a pill!

Finally, it was over. The nurse got the shot in his leg. We all let go of him, but that was just the beginning of his meltdown. He continued to scream and cry. Nothing I did could make him stop screaming and crying. His cries and screams could be heard all over the main floor of the hospital.

I frantically looked for something in my purse to help him stop screaming so we could walk out to our car. But, of course, I had nothing. This was the one time that I didn’t have anything in my purse for him in an emergency, and this qualified as an emergency.

Not only is Trenton drenched in sweat, I was, too. I was so aggravated at myself for not being prepared and was starting to worry if I would ever get him out of the hospital.

Then, out of nowhere, a kind woman walked up to us and handed him a sensory caterpillar toy. He instantly stopped screaming and started fidgeting with the toy.

I finally got him to walk out of the hospital quietly. He was so engaged in his new toy that he was as happy as a lark! I thanked the woman over and over. I found out she watched the whole situation and knew I needed help. She went to the gift store in the hospital and bought him a toy. I’m still grateful for this woman to this day. I fear what would have happened if she didn’t come to our rescue. It’s so nice to know there are people out there who will help others in time of need.

In my eyes, she was an angel to Trenton and me. I hope she knows her act of kindness will never be forgotten.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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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Why I Turn to Michael Bublé When My Daughter With Autism Has a Meltdown

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What is a meltdown? I don’t know what other parents who have children with autism call a meltdown, but I know what a meltdown looks and feels like in my house.

Tonight was going great. Both of my girls were in their beds and asleep before 9 p.m.

I was sitting down, getting ready to clean my kitchen and do the things I do when my kids are sleeping. Then I heard it — screaming and banging. I rushed into Zoey’s room to help her from whatever it was that was bothering her.

As I tried to figure out what could be setting her off, I noticed she was trying to get her long-sleeve onesie off. I went over with a short-sleeve shirt and a pair of bloomers and kept telling her, “Zoey, it’s OK. I can make it better. You’re OK.”

As I was doing this, she was thrashing, kicking and screaming. I took a kick to the face and another to my throat, but I continued to change her and tell her she’s OK.

My husband ran to help, and I yelled, “Get my phone!” He quickly returned with my phone, and I immediately played one of her calm down songs: “Lost” by Michael Bublé.

As I sat next to her, I sang along to the words. She leaned in next to me, and I was able to quickly kiss her forehead. I took her hand and placed it in mine and just held it. She grasped her hand around my thumb and laid down next to me with her blanket over her head. She’s never done that before. I sat there with the song on repeat for 10 times. She started to make a sound like she was humming or at least trying to hum the song in her own way. Then she looked up and smiled.

That’s what a meltdown is like in my house.

It isn’t a tantrum; it’s Zoey’s body and mind telling her and making her feel like she just can’t handle or cope with whatever it is that’s bothering her. It could be her clothes, it could be a sound, it could be she just doesn’t feel good. And she wants to tell me, but she can’t because the words are trapped.

I try and imagine myself as Zoey. I have a good idea of what it feels like for her, and it breaks my heart. Imagine having conversations and screaming for help, but no one can understand you or hear you. You get so frustrated because you want milk, but you don’t know how to point and say “milk.” You don’t know how to point or verbally express your needs or wants at all. And you so badly want to and when you try, only screams come out. Your voice is trapped. Frustration takes over and the only way to release that frustration is to rock back and forth, bang your head, flap your hands or spin. Sometimes you just hit your limit and you throw yourself onto the floor and cry and thrash around until that frustration eases.

For Zoey, music helps her calm down during a meltdown. She can hear the words and whoever is singing is singing to her. She has her favorites like Michael Bublé, especially when he sings, “Baby, you’re not lost.”

If he only knew the impact he has and how my baby becomes calm, relaxed and definitely not “Lost” when he sings.

Follow this journey on Melissa’s Facebook page.

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10 Truths About Making Friends When You Have Autism

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I’ve heard some harsh and untrue comments based on personal theories about people with autism making friends. Some people go so far as to claim those with autism are unable to make friends, and that comment alone is shocking. We may have difficulty making friends, but we’re certainly able to make friends. It needs to be the right kind of person who’s willing to understand and accept the individual for who he or she is. If there were less statements about how “those with autism can’t make friends,” I think that alone would make it easier for us to do so and for other people to open up to us. The way the media presents autism is important, and if we can present it in the right way and help eliminate these stereotypes, things would be much better for us.

As an adult with Asperger’s syndrome, the general public’s perception of autism makes me want to fall into my shell and recluse myself from the world. So my advice would be to stop talking and start listening to those on the spectrum.

Recently, I asked my Asperger Syndrome Awareness Facebook community this: Do any other Aspies struggle making and maintaining friendships?

These are some of their answers.

1. “I find as you get older you learn to adapt better in social situations, but sometimes we just don’t want to be social — not because we are depressed — we just want to be alone.” Melanie Reinburg

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2. “I have very few close friends, and many of them also have Asperger’s or another form of autism spectrum disorder (ASD). We get along because of mutual understanding of each other’s strengths and limitations.” — Rhiannon Hartwell

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3. “I can make friends. It’s maintaining them [that’s] hard.” — Evenstar Hebert

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4. “I always waited for people to ask me to join them, and always have. I went to a couple of groups (and still go to them). Over time I’ve become more and more confident though.” —Jack Pickering

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5.Quite a few, I have found, say all the right things, pretending to show themselves as understanding towards Asperger’s syndrome (AS), but still seem unable to cope if things become difficult.” — Lucy Maull

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6. “Friendships? Not a problem. Relationships, however…” — Jonny Gill

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7. “I just enjoy being with those few close friends who I have a great bond with. My acquaintances just don’t know how to relate to me completely.” — Chris Buley

Chris Buley

8. “The right people will show up in your life [at] the right time. It doesn’t mean they are meant to stay forever. Those that never fail to be your friend are untouched by time and space.” — Fabiana Fabis

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9. “My desire and need for isolation is so great and I almost never feel lonely… nurturing my budding friendships with the time and attention needed is very difficult for me.” —Dymphna Dionne Janney

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10.I’m learning to let go and focus on the few friends that are truly worth the effort (and are actually the ones that feel just as different as I do)!” — Renata Jurkevythz

Renata J

*Some responses have been shortened and edited.

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How You Can Play a Role in Your Child’s Sensory Development

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Do you think you don’t have a role in your child’s sensory development? They’re just who they are and that’s that? You have more influence than you think  100 percent guaranteed.

Back in the olden days — the ’90s — I was an undiagnosed, sensory mess.  My temperature regulation, sound sensitivities and being prone to carsickness made me “high-maintenance” and “difficult.” And before name-calling wasn’t PC, my dad referred to me as “weirdo.” I’m sure he meant it in the nicest way possible. Remember, this was way before Dr. A. Jean Ayres’s sensory processing contributions had gone mainstream. Plus, sensory processing support groups on Facebook didn’t even exist. How was he to know back then that my “weirdness” potentially affects one out of every six kiddos?

I adapted out of necessity by sleeping in the car during road trips, bringing a coat along with me wherever I went and wrapping towels around the clock at night to muffle the maddening ticking sound. But now, I’m a mom and one of my biggest duties is being the sensory barometer. Like all parents, I’ve discovered I’m the sensory hub of the household.

As the sensory concierge, my little bodies come to Mama when they need anything. They’ll say, “I’m cold, I’m hot. I’m hungry. It’s too loud. I can’t hear it. That smells funny. It’s squishy.”

While my child with sensory processing disorder will say, “The ocean water feels like nails. The sand burns. My head is pounding with sound. Make the birds stop chirping. Looking at that makes me gag.” 

And so I accommodate their sensory systems the best I can. I adjust the temperature or modify clothing. I turn down the volume, open the windows and spray the chirping birds with my water gun so that my child’s head doesn’t explode. (No birds are hurt in the process, but they do get a bath.)

As a result, I’ve become a sensory chameleon, putting my sons’ needs first and sucking it up when I’m uncomfortable. Oh, the many things moms do that will never be recognized! I may sound like a sensory martyr, but there’s a method to my approach.

Why do I cater to my kids’ sensory needs? First of all, because I get that you can feel like you’re stuck on a roller coaster when riding on the freeway at 80 miles per hour. Watching the other cars weave in and out of lanes makes you dizzy, and the sun beating through the window can make your vision blurry, your neck feel hot and make your bile climb up your esophagus.

I understand my son’s sensory dysfunction because I have it on a much smaller scale then he does. And so he’s had hours upon hours of occupational therapy, sensory integration and feeding therapy. I’ve read every single OT book and tip out there to learn what I can be doing on my watch.

And I’m grateful for occupational therapists Lindsey Biel, Angie Voss and Britt Collins for sharing their knowledge. They’ve allowed moms like myself to be proactive in helping our kiddos.

Secondly, the more I help him adapt, make changes and prepare in advance, the more it helps him learn to self-regulate and meet his own sensory needs. He knows to watch a DVD in the car to keep from getting motion sickness. He stims, either trampoline or pacing, before school to calm his internal turmoil without my prompting. He can articulate his body is craving heavy work and proprioception (he doesn’t use that word, I do) and pressure squeezes by backing up and placing my hands on his shoulders. 

By accommodating him, he feels better. In turn, he knows he has the power to make himself feel better when he’s out of sorts, uncomfortable or in debilitating pain. I teach both of my kids by showing them it’s possible. And then other times, it’s not because all lessons are multi-layered.

Over spring break, my son with sensory processing disorder (SPD) refused to wear sunglasses, ate a blue snow cone and a quesadilla (yes, 100 percent gluten and casein molded together!) and went on clunky, jerky rides at the Yuma County Fair. I let him because he has to be the master of his own sensory system. He’s highly sensitive to what goes into his digestive system. And at 13, I’m assuming I only have another five years (or less) where I can control what goes into his body.

At some point, I’ll officially hand over the reins and he’ll have to steer. So, I let him drive that day. And that night as he lay in my lap with his hands over his eyes, wincing in pain from the headache of the century, he cried, “Mommy, I made some really bad choices today!” That’s a lesson he couldn’t have learned by me badgering him.

As their mom, I’m also the sensory tour guide. I plan trips, adventures and projects to expose my kiddos to the great, big sensory world out there. We live close to Disneyland and go there often for sensory therapy day. The crowds, the sounds, the colors, the tastes and smells make this a plethora of sensory stimulation. We get through it — and they want to — because it’s fun.

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On a simpler note, I make sensory bins, although my kiddos respond quite differently to these contained boxes. My oldest can search for toys and play with rice and beans for hours at a time. When he’s done, we put the lid on and wait for his next stereognosis experience. With my youngest, he’ll dump the rice and beans out onto the lawn in two seconds flat and be done. No sensory bins for him, thank you very much. So I plan and expose them to sensory stimulation to meet their individual needs any way that I can.

At the end of the day when I’m sensory drained, I go back to my sensory well and refill, because I not only predict their sensory needs, I’m paving the way for them to have a sensory fantastic life. I’d like to encourage other parents to do the same. It’s easy as parents to forget that have such a massive influence on our kids’ lives and even their sensory systems. And it’s my hope that pediatric OTs will encourage their clients’ parents and arm them with the tools to add to the sensory foundation they are creating.

Jackie Linder Olson the-mighty-07092015-002

Follow this journey on Peace, Autism and Love.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. 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 2 Words You Should Say to Someone Facing a New Diagnosis

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We’ve been through the diagnosis. We’ve been through the IEPs and evaluations. We’ve navigated education systems in three different states. I’m starting to feel like a veteran autism mom and blogger.

As seasoned and experienced as I’m feeling, I was caught off guard when two friends recently started going through the diagnosis process with their own children and I didn’t know what to say. I think I found myself tongue-tied because all I could think about were the things not to say — the well intended comments made to me when we started this journey that were meant to comfort but cut like a knife. During my discussion with these moms, those comments came rushing back into my head. Some almost came out because I just didn’t have the right words in that moment. Wow, this is what it feels like to be on the other end of this conversation. But even without the right words early on, I couldn’t bring myself to say the wrong ones. 

I wouldn’t say, “I’m sorry.” I heard a lot of these. They were always empathetic and heartfelt. But they made me feel worse, not better. I didn’t want people to be sorry for me. While this life might be different, it’s not less. While my child might miss out on some things, he’s not less. His life and his diagnosis are not things I feel sorry for; you shouldn’t either.

I couldn’t say, “He’ll be fine.” I don’t know if your child will be fine. I don’t know that Early Intervention will move mountains. I don’t know what the next 20 years looks like for you and your family. And when people told me, “You caught it early; he will be fine…” it hurt. If he doesn’t overcome challenges, if he doesn’t mainstream, if maturity doesn’t lessen his challenges… does that mean I failed? Please don’t compare our journey to that of a friend of a friend whose child has autism spectrum disorder, had therapy and is now “fine.” ASD is complex, and no two journeys are the same. Even as a mother of a child with autism, I’m hesitant to give advice, as I know my son’s autism is not your child’s autism.

I knew better than to say, “Really? He seems so normal.” I was surprised by how much I heard this one. It seemed like a backhanded compliment. But it not only minimized what we were going through daily, it inferred that if he did indeed have autism, he was abnormal, broken.

I would never say, “Oh, I hope not.” I only got a few of these doom-and-gloom responses. They lacked empathy and pretty much damned us to a life of a misery in one simple phrase. It’s not a comfort, and it’s not helpful to try to wish away a family member’s diagnosis. It’s hurtful.  

You see, all of those phrases are overthinking and overanalyzing someone else’s situation. They don’t comfort; they simply insert my opinion when my opinion wasn’t asked. Parents facing an ASD diagnosis don’t want unsolicited advice or pity. They don’t want you to minimize their feelings or give false hope. They want you to listen. They want you to care. They want you to stay in their lives and perhaps not brand them as “special needs parents.” They want you to understand that although their lives might be taking a different turn, they still need friends. Their children still need friends. 

Then it came to me. The two simple and perfect words you can say: “I’m here.” And mean it. Mean it through every struggle, every victory and every passing year. Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands. Mean it when you’re making out the list of which children to invite to your child’s birthday party. 

They don’t need you to be an expert on autism. They don’t need you to always say the right thing. Now, more than ever, they need you to just be there.

mother embracing her son

Follow this journey on From the Bowels of Motherhood.

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