A Man Called My Son 'Retarded.' One Stranger Wouldn't Stand for It.

79
79

When my son Ryan was 5, his destructive behaviors escalated, and he always appeared to be crawling out of his skin. He was never still, never comfortable, never happy, never sleeping, always angry and extremely physically aggressive. He punched, hit, bit, spit kicked. We still have scars, both emotional and physical, from that time.

One thing that would temporarily soothe him was motion: riding in a car, a swing, being on a train or pulled in a wagon. The movement somehow helped center the frequent sensory explosions that came at him from the world.

One day, I took him to a mall; they had a train set up for kids, and I wanted to see if he would enjoy it. Part of me was desperate for Ryan to experience some “typical” activities other children his age engaged in. I intentionally selected a day during the week, when it would be less crowded. I was greeted in an incredibly harsh way by the gentleman running the train — let us call him “Caldwell.” Caldwell looked tired and angry and was not the type of person who should be interacting with children. I should have listened to the maternal instinct inside of me that recognized the emotional red flags, but getting Ryan out of the house at that time was such an exhausting accomplishment, I stubbornly decided, mean man or not, my son would ride that train.

As soon as the train started, Ryan started stimming. For those who don’t know, self-stimulatory behavior, also known as “stimming” and self-stimulation, is the repetition of physical movements, sounds or repetitive movement of objects — common in individuals with developmental disabilities but most prevalent in people with autism. In Ryan’s case, when he’s happy, he flaps his arms, bounces up and down and makes loud sounds.

little boy in mall train

The second Ryan started bouncing, Caldwell ran (literally ran) over to him (as the train was moving) and screamed at him to sit down. At first Ryan didn’t realize Caldwell was directing this verbal attack at him, but it happened repeatedly until finally his tone and close proximity scared Ryan, who immediately started to melt down.

I’ve been able to exhibit patience and professionalism in the face of adversity many times in my life — this was not one of those occasions. I ran like hell towards my son, grabbed him off the moving train (Caldwell was now yelling at me) and waited until the ride was over. When it was, I approached him with my screaming child in my arms, who was at this point pulling my hair, biting my face and crying in sheer terror. I explained to him that Ryan had special needs and he was excited to be on the train; his bouncing was stimming, which meant that for a few minutes, he was comfortable and happy. I wanted to try putting him on the train again, but Caldwell said no. His words and I quote: “Retarded kids shouldn’t be riding my train.”

It was one of those surreal moments where the room stops and things go silent. I couldn’t absorb his words and kept thinking, “Did he really just say that?” When I came to, the Jersey girl inside of me exploded, and I lost it. I wasn’t patient or professional in my delivery.

Ryan continued his aggression as a small crowd emerged. This was before cell phones or all of this would have gone viral on You Tube, and while I felt humiliated and wanted to leave, I also felt paralyzed. Caldwell walked away from me while I was screaming at him, and I just sat on the floor and started to cry — I mean really sloppy crying. This only exacerbated Ryan’s emotional breakdown. Boy, were the two of us a sight. I still have the scar on my leg from where he accidentally kicked me and drew blood.

It was at this moment that a woman came over to me. Let’s call her “Madison.” She hadn’t seen what had happened but saw me on the ground sobbing with a hysterical child in my arms and blood coming through my pants. Madison sat down next to me and started talking in a soothing voice to me but all the while looking at Ryan. She told me in this soft, hypnotic voice that she was the mother of a child with cerebral palsy. She had a couple of hours to herself each day, and she often came to the mall. As she told us her story, she handed Ryan some chips, and he began to calm down, and I told her what happened. She stood up, took my hand and led me right to the general offices in the mall. Madison demanded to see a manager and told him the story of Caldwell and Ryan and the train incident. The manager instantly retrieved Caldwell, demanded he apologize to me and told me he would be “severely reprimanded.” I, of course, insisted he be fired and threatened to call my attorney.

The manager handled me well. He told me he could only imagine how hard things were and how hurt my feelings must be. He gave me his business card, a $100 mall gift card, patted Ryan on the head (FYI: Never do that to a child with autism) and told me to please come back to the train and give it another try anytime and for free.

Madison stayed with me through this ordeal, and when we said goodbye she said something I will never forget: “You can’t expect people who don’t experience the pain we do on a daily basis to get it the way we do. Only other parents like us can truly empathize.”

I didn’t recognize it at the time, but in this one traumatic event, I experienced both sympathy and empathy. Caldwell was a terrible person, the mall manager sympathized with the situation, and Madison knew how to help me because she was able to experience true empathy for me.

Madison’s words have stuck with me over the years as I often find it difficult to empathize with people in situations that don’t rise to the level of autism. It’s difficult to get to the pain of someone who’s complaining about something I see as routine. It becomes isolating for a special needs parent to be around parents of “typical” children because everyday conversations come up and you can’t participate. Bring up the Caldwell and the train story at a playdate and you can only imagine how awkward it becomes. Sympathy, pity, discomfort all over the place — but not empathy.

As a teacher and school administrator I felt a special connection to my students and families affected by disabilities. Some would say at times I favored them — that was my empathy shining through. As a special needs attorney, I will organically empathize with clients and families, and I believe that will enable me to serve them at a deeper level. Dr. Daniel Goleman, a famous psychologist and author on “Emotional Intelligence,” wrote that “a prerequisite to empathy is simply paying attention to the person in pain.” I try to do this each and every day with everyone I encounter. It comes naturally to me in some situations and is more challenging in others. But I pay attention to people’s pain.

Madison taught me to seek out my fellow special needs warriors and be there for them. I pay her empathy forward as often as I’m able to. I urge anyone reading this to pay attention to the special needs families in your own communities, at your schools, at your restaurants and especially those melting down publicly somewhere at a mall, grocery store or Target. We’re everywhere, and if you show the slightest bit of kindness towards us, even if you can’t quite understand our pain, we will never forget it or you.

This post originally appeared here.

 The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. 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 Submit a Story page for more about our submission guidelines.

79
79

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

To All the Grandparents of Children With Autism

4k
4k

I’m blessed in my life; I have a strong support system with my family. If it wasn’t for my parents and my sister, I don’t know how I’d have managed half of what I needed to do for my son Emilio. They were (and still are) always there for me and for my kids.

autism-grandparents copy

But I also think of my friends whose children never had a chance to meet or get to know their grandparents. Grandma and grandpa received their calling too soon. I have you in my heart as I write these words.  I’d like to think that somehow, they’re watching from the heavens above guiding you all on your journeys.

And so, I’d like to pay a tribute to all the grandparents of children with autism.

Thank you for being the rock that kept us grounded when our world was turned upside down.

Thank you for not only understanding your grandchild’s diagnosis but for understanding our pain as well.

Thank you for adapting your home before anyone even asked you to.

Thank you for the times we found unexpected cooked meals, a clean house and the laundry done; we are grateful.

Thank you for being there to pick them up at school after a meltdown because we couldn’t leave work.

Thank you for coming with us to therapy for the moral support and so we didn’t feel alone.

Thank you for keeping them overnight so we could sleep in; the respite was much needed.

Thank you for your encouraging words and your endless supply of unconditional love to all of us.

Thank you for making more than one meal because you wanted to make sure they ate something.

Thank you for buying identical items to keep at your home so we didn’t have to carry them around.

Thank you for taking the time to understand the triggers that can cause a meltdown.

Thank you for the countless times you held us while we wept out of frustration and helplessness.

Thank you for not judging us when we lost it.

Thank you for educating others about autism because we know it affects you too.

Thank you for always staying strong and never showing your fear or concern in front of us.

We couldn’t have done this without you.

Your strength and unwavering support is what got us through this.

We shine a spotlight on you because you all have played a significant role in the lives of your grandchildren.

Please never forget how precious you are to them and to us.

The month of April is all about raising autism acceptance and understanding, but for every family in the autism community, we know we do this every single day of our lives.

Thanks for stopping by.

This post originally appeared on Speaking Autism.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

4k
4k
JOIN THE CONVERSATION

Every Special Needs Mom Deserves to Hear This

3k
3k

I just came from an elementary band concert and I saw a fellow autism parent there who was with her son for his first band concert. As I watched her, this friend of mine, I was thinking, I bet there is no one else here, except for her husband, who knows how hard she is working right now. To an unsuspecting observer, she was just a mom with her son. To me, she looked like she was paying attention to his every word and body movement… to his very aura, if you will. This is what I call the “Behind the Scenes” of autism.

It deflates me when I’m somewhere with Evan and people say, “He looks like he is doing so well.” Yes, thank you, he is doing so well, but what you don’t see is how hard I have to work to keep it that way. I monitor his environment and his body language constantly to avoid any potential trouble, and this task is exhausting. I have to do it at home, too, though it is much easier in our own space, as most of our variables are known.

When I saw this mom, I knew how hard it was for her. She stopped by to say hi, and I told her she was doing a great job. I hope she heard me… I hope she understood that I meant it, and that I probably don’t understand the whole of her struggles but that I get where she is coming from and how hard this night probably was for her. I understand how risky it was for her to let go and allow her son to have his moment on stage with his band. I felt her stress and how on edge she was. I understand that the hurdle they jumped tonight was on a whole other level, and I hope next time that hurdle doesn’t feel so high.

I told this mom that she was doing a great job because that is what I want to hear. When I make it look easy, remember that it usually is anything but, and more days than not, I feel like I’m not doing enough. It might look like I’m putting this puzzle together with crazy glue, but it’s more like washable school glue that will fall apart at the slightest breeze.

So to all the superhero parents out there I know: keep up the good work. You are doing a great job.

Mother and young son with heads together smiling
Photo source: Thinkstock Images

This post originally appeared on The Autism Chronicles.

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. No gesture is too small! If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disabilityLike us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

3k
3k
TOPICS
,
JOIN THE CONVERSATION

The 'Arrival Anxiety' That Comes With Having Autism

189
189

“Arrival anxiety.” That is what I have always called it. It is, in my mind, the best way to describe it.

It does not matter where we are going or how often we have or haven’t been there — it happens. I see the change in my son’s demeanor immediately. It happens so quickly, like walking though a door; on one side he is happy and the other side he is full of anxiety.

I always dreaded the birthday party invitation when my son, DC, was little. The first half hour, sometimes more, was spent trying to calm him down. No matter how much I tried to prepare him beforehand, he would scream, cry, flap and resort to very loud noises. Everyone stared and the other children would huddle with their parents because they were either afraid, nervous or both. Most of the time, he would eventually calm down, but how I always dreaded our entrance.

After awhile, I realized that the mention of a party meant “cake” to DC. He was expecting cake as soon as he arrived. He didn’t understand why he had to bowl or play games; he was only there for the food. Once I realized this, I just stopped calling these events we had to attend “parties.” We were going bowling or to someone’s house or a picnic. Believe it or not, this helped a great deal with his “birthday arrival anxiety.”

young boy at a party

It still happened, of course, but it was not as severe. Afterwards when we talked about the party and whether he had fun, I would then refer to it as a party in the hopes that he would at some point realize that yes, it was a party, and there was no cake at the door, but he had a good time anyway.

I remember being invited to my friend’s house for her daughter’s graduation party. Again, this was not going to be described as a party; I called it a picnic. We were there for a good while before DC saw one of the tablecloths (a party tablecloth). I saw his eyes widen and he signed “party” with a question on his face as if he were asking “Is THIS a PARTY??” Fortunately by that time, it was time for cake. Eventually he did begin to understand that a party meant more than just cake and our arrivals were not so traumatic.

This “arrival anxiety” continues today; of course, not as bad as when he was younger, but he still has an immediate change in personality, temperament and expression upon arrival to almost anywhere. You might think he is anxious about places he doesn’t want to go, or places he’s never been and yes, those are some factors, but his highest level of anxiety happens when we are going to places he loves to or has been looking forward to going.

Part of this is just anxiety, plain and simple, but as with the earlier birthday issues, a lot of it is about the fact that DC always has an agenda in his head. Whether or not I hear about the agenda over and over again, I know it’s there.

At the times when we are going to places he really loves, like Disney or New York City, I do hear about his agenda for quite awhile before we arrive. He’s excited all the way there and the anxiety kicks in the moment we arrive. His face changes and he begins spewing random words or phrases — “Another one, another one” or “Froggy, froggy, froggy” or whatever the random word of the day might be. He gets himself so wrapped up in his head about what he wants to do and is in such a hurry to do all of it that he just can’t control himself.

Last week we went to New York City for his birthday. We park in the same parking garage every time we’re there because it is pretty much centrally located and walking distance to all of the places he wants to go. Each time, as soon as he gets out of the car, he begins yelling out his random words, clenching his fists and making his loud noises. An observer would really think that he hated being there. He does this all along the route to Times Square or whatever our first stop might be. I was impressed that on our trip that weekend the “arrival anxiety” was quite minimal and he was over it by the time we left the garage. One step forward…

Yesterday afternoon, I told DC that we would be going out to eat for dinner. I never mentioned where and he never asked. When we arrived at a place in town that after 21 years living here we’ve never been before (I was always under the impression that it was a bar until we received a gift certificate for dinner), DC was upset and the whole routine began and continued for an extended period of time — even after he discovered they had all of his favorites on the menu.

We’ve been to new places before – often. But again, I think that when he heard we were going out, he had a few ideas in his head about where we would be going. He often has ideas about where we will be eating, usually more than one. If by chance we do not go to one of the places he had in his head, but it turns out to be a place he knows, there is no problem. Or if I tell him the name of a new place, there is no problem. This was not one of those times. It was not a place in his “mind file”  and it was not an alternate restaurant that he knows he likes but just didn’t think of. It was new.

He did order all of his favorites (all of them) and eventually had a “wonderful time” (DC-speak). I am sure he would be happy to go back again sometime.

Because I neglected to tell him that this was a place he’d never been before (my fault), I will rate last night as only 1/2 a step back. 

This post originally appeared on Taking It a Step at a Time.

Want to end the stigma around disabilityLike us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

189
189
TOPICS
,
JOIN THE CONVERSATION

When Our Favorite Restaurant Didn't Have the One Item My Son With Autism Orders

225
225

There’s this fantastic local restaurant in our little town called Loretta’s. My husband Sean and I have been going there for years.

Our boys have joined us there many times. It’s such a yummy, family-friendly place.

And such a TJ-friendly place. Let me explain.

All TJ wants when he goes out to eat anywhere is a burger. Whether they have it on the menu or not. So when they don’t, we’re sometimes faced with the challenge of his anger and trying to contain it.

Loretta’s occasionally has a hamburger on the menu, and they always know just how TJ likes it — plain with no spices in it or anything. And nothing on it. TJ always orders his burger by saying, “Just bun, burger, bun.”

On previous times when I’ve called Loretta’s for a reservation, I’ve asked if the burger was on the menu. Once when it wasn’t, Loretta ran out to buy some ground beef ahead of time so she could make a plain burger just for TJ.

That’s the kind of wonderful lady she is.

Anyway, when I called last night for our reservation, I didn’t ask. We’ve been working on TJ’s flexibility lately, and I wanted him to try to go with the flow and adjust accordingly if there was no burger. I push him often, and yes, it gets messy, but yes, it works in time.

When we sat down and looked at our menu, there was no burger. We agreed that TJ would have plain buttered noodles with salt. When I asked the waitress to make sure there was no parsley or garnish or anything on the plate, she kind of had a double take moment (we didn’t know this waitress). But she smiled and went back to deliver our order.

TJ was upset. I asked him to take a deep breath. He yelled “No!” and I thought for a quick second, that’s it, we are done here. I calmly told him he’s not to yell like that in a restaurant and asked him again to take some deep breaths. He did. He wasn’t happy, but he did. Then his brother, Peter, asked him about a movie he wanted to watch later. TJ calmed down, and we seemed to be in the clear.

Then the waitress came back and said to TJ, “Loretta said she can make some chicken fingers and fries for you if you’d rather. Would you like that?”

Immediately TJ smiled. He almost yelled when he said “Yes! Thank you!” And I said to the waitress, “Please tell Loretta that we love her.”

I think it was the “no parsley no garnish no nothing” request that let Loretta know it was us.

A few minutes later the waitress came back with some chicken wings saying, “Loretta thought you all would like this while you wait for your dinner.”

I was taken back by the generosity and kindness we were experiencing. Blown away and so touched.

A few days ago I was upset by two young girls giggling and staring at TJ in the orthodontist waiting room as he looked at a kids’ animal magazine. And here I was almost brought to tears by the kindness of this restaurant and its people. That’s the kind of yo-yo ride we’re on. That is life.

It reminds me that just when I feel beaten down, along comes someone to reach out to us and help us back up.

Kindness for kindness sake does exist.

It’s a kindness that lasts in our family long after our visit to your lovely restaurant is done.

Thank you, Loretta. Thank you and your wonderful staff for your kindness and caring.

It really does mean the world to us.

two boys at a bowling alley

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

A version of this post originally appeared on I Don’t Have a Job.

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. No gesture is too small! If you’d like to participate, please send a blog [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

225
225
JOIN THE CONVERSATION

Why I'm Looking for a New Neurologist

677
677

Yesterday was a tough day. We had our six-month review with my daughter, Zoey’s, neurologist (which really ended up being an eight-month review, but OK).

I had to process the entire hour-long visit on the two-hour car ride home. I cried the entire way out of frustration.

The neurologist saw her for one hour. That’s it — one hour. How could he possibly know her progress by only seeing her for one hour and without letting me explain her accomplishments? Zoey has autism, sensory processing disorder, global development delay and obsessive compulsive disorder. She’s progressed in leaps and bounds over the past eight months, but he didn’t listen and it seemed like he didn’t care. Just because you have an MD after your name does not give you the right to talk right through me, talk over me, rush me out and treat my child like a number from the deli line.

I was told she’s made little progress, and I was questioned about how I work with her. He asked, “Don’t you listen and get instructions from the therapists on how to work with her weekly?” I felt judged as a parent. I showed him the video of her singing and tried to talk to him about all she’s done since he last saw her, and he treated her like a statistic. She is not a statistic. She is a human being, and so am I.

When did human compassion and caring for a patient get exchanged for “… Next!”I felt like he was telling me I wasn’t doing my job as a parent and that my child was nothing more than generic deli meat being passed back to me with, “Come back in six months.”

I will not stand for this. We as parents know our children — we see them every day. Zoey has achieved so much over the past 10 months: she now looks us in the face, she gives hugs, she sings and dances, she wants to be around us, she can eat at the table with us and she can count to seven, among many other things.

There are so many things that she’s doing now that she’s never done before, and it’s incredible. Before, she had stopped speaking entirely. She hid away and was in her own world, and I missed her.

I don’t miss her anymore — I’m getting her back every day. That is progress, and it hasn’t been slow. She will be 3 in five months, and we will then transition her to a developmental pre-Kindergarten program.

So I’m currently looking for a new neurologist. One who cares and who won’t treat her like a statistic, and one who will listen to me and my concerns and answer my questions.

Don’t let anyone treat your child as anything less than amazing.

Melissa's daughter
Melissa’s daughter

Follow this journey on the Facebook page Life With Zoey.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

677
677
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.