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When I Didn't Recognize the Woman Next to My Son With Autism

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Who is that woman with my son? She just stands there as my son, Philip, messes up the craft. At this table, the public library has a project in which a coffee filter is supposed to be glued to the top of a green rectangle of construction paper to become a flower on a stem. Philip is gluing it in the middle! Wait, is she helping him do it wrong? Why didn’t she point out how the other kids are doing it the right way? She acts as if this gymnasium is full of families who won’t notice.

Philip should now select a pastel cupcake liner and glue it inside the filter as the flower’s blossom. He touches the pink, blue and yellow cups, but puts the cap back on the glue stick. And that woman lets him.

Now he is moving to the other side of the table. He has discovered the librarian’s stash of black markers. And instead of telling him not to touch them, that woman is chatting with the librarian. Wait, she’s finally taking action. Maybe she’s going to yank the marker out of his hand.

She takes a photograph.

Cyn K The Mighty.1-001

From one table to the next, Philip refuses to complete the activities at this event as designed. That lady doesn’t correct him once. He takes stickers from one table to embellish his “not a flower.” He borrows the bright markers from another to decorate it even more. She does nothing to stop him.

I would have pushed Philip to stand on the right side of the table like all the other kids were doing. I would have fixed his projects, taking over so they more closely resembled the samples. I would have apologized for Philip’s errors.

I would have compared Philip to the other children and noticed how different he was. I would have been too self-consciousness to stay. “We’ve been here long enough,” I would have said in a falsely cheerful voice. My discomfort would have pushed me to skip the rest of the displays and leave.

I am the mother Philip was born to, but I no longer exist. I am the mother who worried about sideways glances and whispered comments from others about her son with autism. But I was slowly replaced by that woman sitting on the floor (on the floor!) as Philip eats frosting off a cupcake. She’s not thinking about what others think. She knows her son is just right as he is.

Philip doesn’t have the same mother. But now his mother is happier, and she hopes Philip is, too.

Follow this journey on That Cynking Feeling.

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The First Time Taking a Bath Didn't Lead to Sensory Overload

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Until the age of 2, everything seemed to be going fine. I was hitting most of my major milestones and was one of the more affectionate toddlers you’d ever meet. But that was when there was a setback. One of the major issues those with autism deal with is sensory overload. For me, this was the time when we saw a regress in my autism happening. I was nonverbal until I was 2 and a half, but the amount of texture issues I had to deal with were almost unbearable.

This brings me to one of my most complicated struggles I had as a toddler…

Water.

This is a huge issue for many in our disability community. Add autism to the mix and it can be too much. I didn’t like being in a shower or bathed whatsoever. Later, when I began to talk for the first time, I would scream, “Go away, rain! Go away, water!” My parents would use wet cloths to clean me as a shower nozzle or a tub full of water became an impossible solution. Tactile autism had become a major difficulty and for a while, it seemed like it would never get better.

As I was still very young, I really never embraced how much this may be impacting me at the time. Going from not being able to bathe to suddenly not being able to hug or embrace my loved ones was so difficult. I know it was heartbreaking not only to my parents, but to my entire family when they realized the kid who would come around during the holidays suddenly didn’t want to be touched by anyone he’d grown up with.

It wasn’t until later that the conversation changed.

A little after I turned 3, we were at a local pool for a birthday party. Like many times before, I wasn’t looking forward to the experience. My parents struggled to put my bathing suit on, and we were off. When the party started, all the kids were in the pool while I was on the outside looking in. There were also several shower nozzles around the pool. For whatever reason, seeing all the kids having fun running around the nozzles led to a trigger going off in my head.

Before I fully realized the danger that could’ve happen by doing what I was thinking, I ran under one of the shower nozzles and instead of flapping, twirling my hair, running away or doing any of my usual coping mechanisms, I just smiled and laughed with the other kids.

young boy playing outside in water

My parents were thrilled, and later that night was the first time they were able to bathe me in a bathtub for over a year. I wish I could tell you there was a miracle solution that made this happen, but there wasn’t. It just clicked, and for my family and me, that was enough.

I hope by sharing this emotional experience I can help spread awareness for the need for those with autism to get the best Early Intervention services possible to help with these overloads. For those out there who may have a similar difficulty with their children, please know I’m there for you when these issues arise. Being a part of a community is about being able to share our stories, especially when some of the hardest times take place.

Today, water doesn’t affect me at all, and I hope one day, if your kids are ever invited to a pool party in the future, they’ll be able to have as much fun as I did that day.

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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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