To the Kind Woman in the Waiting Room With My 2 Autistic Children

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Dear woman in the doctor’s office waiting room:

I know you saw me. In my yogurt/banana/snot-stained shirt, chasing my 2-year-old around as he climbed on everything and everyone (from chairs to decorations to unplugging the Christmas tree).

You heard me apologize and explain that my double stroller doesn’t fit in the treatment rooms, so the single stroller had to do, and only one child could be contained at a time.

You saw me desperately drain my phone’s battery playing “Curious George” to try to keep my kids appeased. You saw me switch up who remained in the stroller. You saw me then try and keep my 3-year-old from biting patients. From knocking the magazines off the table over and over again. From hurting himself as he stumbled around.

woman in waiting room playing with autistic child

Then, as he climbed and flipped over the arm of the couch, half on, half off — I saw you rub his back. I saw you play with his feet and make them “bicycle.”

I saw him calm, smiling. I saw you take his hand and walk with him. Hug him. Talk to him gently. I saw this as I desperately rolled the stroller around the room to keep my 2-year-old from screaming and melting down.

I smiled and thanked you. I made sure you knew he could bite. You were unfazed as you hugged my drooling and pinching toddler happily, making him laugh. As we were called back (after an hour-long wait), I thanked you so dearly and sincerely and let you know that you’re amazing. Then I saw you put your hand on my shoulder and say, “You are amazing.”

I felt the tears come from my eyes as I felt genuinely accepted and appreciated and loved by a complete stranger. I never even got your name. But you will never know the impact your kindness has made on this mother of two autistic children. Instead of the usual dirty looks and judgment, I got understanding and kindness — a rare thing in public when you have nonverbal autistic children. You understood. You didn’t ask what was wrong with them. It didn’t matter. You saw that you could help, and you did.

If there were more people like you in this world, it would most certainly be a brighter place. I thank God for you, and I know there are angels out there among us. Thank you.

Sincerely,

A mom who has never felt more accepted and understood

Follow this journey on Emily’s Army.

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 Submit a Story page for more about our submission guidelines.

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Mom Captures Tender Moment Between Mall Santa and Boy With Autism

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A mom’s post about her son’s sweet encounter with Santa has touched the hearts of thousands of people.

Naomi Johnson’s son Landon, who she calls “L,” has autism. On a recent trip to the RiverTown Crossings Mall in Grandville, Michigan, L shared an intimate moment with the Santa.

Landon spoke with Santa about his autism and how sometimes people think he’s naughty because of it. Santa reassured Landon and reminded him it’s OK to be who he is.

I had an AMAZING experience w the Santa at the RiverTown Crossings Mall and I want to share my story with you:My child…

Posted by Naomi Johnson on Sunday, December 6, 2015

 

Read the full text of the post below: 

I had an amazing experience with the Santa at the RiverTown Crossings Mall and I want to share my story with you:

My child is amazing! He has his quirks and drives me bonkers, but he is amazing! The other day he went to see Santa with the cousins. He said his peace to the old man in red and walked away. While Aunt Brittany waited for pictures to print, he went back to Santa because he wanted to tell him that he has autism. He was flapping his hands, all excited to let Santa know that he has autism.

Santa sat him next to him and took L’s hands in his and started rubbing them, calming them down. Santa asked L if it bothered him, having Autism. L said yes, sometimes. Then Santa told him it shouldn’t. It shouldn’t bother him to be who he is. L told Santa that sometimes he gets in trouble at school and it’s hard for people to understand that he has autism, and that he’s not a naughty boy. Santa told L to not worry and that he has been a very good boy being who he is.

They sat and chatted for at least five minutes. Santa paid close attention and listened to him. This just melts this momma’s heart! My child is a great advocate for himself. But this day was different. He opened up to this person about who he was and he was accepted. He wasn’t a science experiment, like he gets treated when most people find out he’s autistic. He was Landon, sitting with Santa and being told that it was OK to be himself. Mommy tells him all the time that he’s special and I love him the way he was made, but it’s always nice to hear it from others — to be told that it’s OK to be who he is.

We have met a lot of amazing people in our Autism journey, but this one made the top of the list. Shout out to the Santa at the RiverTown Crossings Mall. You are amazing!

Johnson posted the photo to the mall’s Facebook page along with the story on Sunday, and since then it’s been shared more than 10,000 times.

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To the Friend Who’s ‘Moved On’ From My Child With Autism

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We’ve all been there. We’ve all felt it. We’ve been the one left behind, and we’ve been the one who has moved on. It happens in childhood and adulthood. It often happens without cause, without blame. It just happens. Circumstances change, times change, people change. It’s hard, it hurts, but we learn from it and we grow. But no matter what we learn or how much we grow, in that moment, no matter if you are the one walking away or the one watching someone go, moving on can hurt.

A lot of times we see it coming but choose to look away. It is a slow, barely discernable shift. The invites stop coming. The time between phone calls or get-togethers becomes longer. There are new faces, new names, new friends on social media, in the bus seat, at the lunch table. As parents who have lived through moving-on moments, we see the signs, we can tell the change is coming, but somehow, when it’s your kid, you want to ignore the signs, unsure of where the signs will point your child next.

It’s one thing when it’s your heart — it’s a whole new ball game when it’s your kid’s heart.

I saw it coming over this past year, and even though my heart always knew the moment would come, I was still amazed at how much the words took me by surprise. “So, do you still sit with so and so at lunch every day?” I asked while making conversation waiting for the bus. “Not too much anymore, he’s moved on,” my son Ryan said nonchalantly. “Wap!” That was the sound of those signs I tried so hard to ignore smacking me right in the face. Like I said, the signs were there, but I pretended not to see them. My friend Denial had been stopping by again for wine, but as soon as Ryan said the words “move on,” Denial jumped out of the car and boarded the bus with Ryan, and I was left alone to process those words and what they meant.

When your child has autism, when making friends is hard, having a friend, the friend, move on is hard… at least for the parent who watches the friend go. I’m not saying Ryan doesn’t care his friend has “moved on” (just an aside, I was shocked he used the phrase “move on” in the first place); I’m saying he doesn’t talk about it. With the exception of the words, “he’s moved on,” I have no idea how Ryan is feeling. However, I do know how hard it was for him to get here, to have a friend and to be a friend.

For a long time, the word “friend” was known as “The F Word” to me, and yeah, it was as derogatory as that other F-word that rhymes with truck. Most of the negative connotation with the word “friend” was my problem, not Ryan’s. So when the friend came along and stopped, I was elated.

So now that the friend has “moved on,” I may not know how Ryan feels, but I certainly know how I feel, and it’s a mix of sadness and gratitude — but mostly gratitude. Just like a neurotypical kid having a friend moves on, as a parent, I can’t make the friend stay, but I can make sure the friend knows how glad I am he stopped on his way.

So to the friend who has moved on, my first and most meaningful words that I hope you will take with you as you go, are thank you. Thank you for taking the time to stop when many kept going. Thank you for seeing him when others did not. Thank you for trying when others gave up. Thank you for being his friend for years when others moved on immediately.

I knew the time would come when things like Mario and Minecraft would not hold your attention the way it continues to hold his. I knew things like hanging out with friends, going to parties, making new friends, trying new things and maybe even (gulp) girls would supersede Mario taking out Bowser in level 10 of Super Smash Brothers. I knew one day you would want more from a friend than he is able to give. I knew you would move on. I get it, and I’m happy for you. Really, genuinely happy for you.

I’m also happy for Ryan. You stayed long enough to show him what it’s like to have a friend. I’m happy Ryan learned to try and put others first. I’m happy he learned to celebrate your victory rather than cry over his defeat. Whether it was on the mini golf course or on the Wii, Ryan learned to be happy for a friend. I’m happy that after years of not having a friend, Ryan learned what he had been missing, and he learned that from you.

I hope that you learned a little from him, too. Like how to understand and accept people who don’t always fit the mold of everyone else at the lunch table. How to be friends with someone who does not “share personal information,” and how to destroy multiple zombies with your eyes closed on Minecraft.

Eleanor Roosevelt said, “Many people will walk in and out of your life, but only true friends will leave footprints in your heart.” I believe there will always be footprints in each of your hearts representing a time where you and Ryan both stood together. And although you may have “moved on,” you are always welcome to bring your footprints back up our sidewalk where you will find a friend happy to see you again waiting with a can of Pringles in one hand and a Wii controller in the other.

And if that moment doesn’t arise, I want to wish you well and thank you for preparing him for the next friend who will one day leave footprints on our sidewalk and in his heart. Ryan will eventually let that friend in, because I believe you showed him how to open the door.

Follow this journey on The AWEnesty of Autism.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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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Viral Photo of Refugee Family Shows How War Has Affected a Boy With Autism

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A recent Humans of New York post has been receiving a lot of attention online.

It features a photo of a refugee family from Turkey with a quote from the mother explaining how the war made it so that she could no longer get autism therapy for her son.

“He cried a lot as a baby. By the age of two he wasn’t speaking or eating. Our local doctor didn’t know what was... Posted by Humans of New York on Friday, December 4, 2015

The text reads:

He cried a lot as a baby. By the age of two he wasn’t speaking or eating. Our local doctor didn’t know what was wrong, but we found a good doctor in Damascus, and he told us that our son had autism. The doctor recommended a therapist. On the first day of therapy, he was too scared to even enter the office. But after a few months of treatment, he was able to concentrate and even write the alphabet. He went to therapy every week for the next few years. It was really helping him. He was learning so many things. But when the war came, the roads were closed. We couldn’t go to therapy anymore. The bombs affected him very badly. He gets scared easily. He’s even afraid of the dark. But the bombs scared him very much. He hasn’t been to therapy for years. We have no money or insurance here in Turkey. We are very isolated. It seems that all the progress has been undone. He used to want to learn. He used to get his books out of the bag and bring them to us. But now he just throws them away. He can’t sit still. I’m afraid that we’ve lost too much time now. But my husband is optimistic. He thinks that we will find the right doctor in America.

Many people expressed concern and showed their support for the family in the comments, including several speech and behavior therapist who even offered to help the family.

I’m autistic and I can read, write, and do all the things ‘normal’ people can do,” wrote Amanda Harris. “There will be hope in America for your son. I did have years of therapy and someone was always holding my hand until the age of 19 but I turned out just fine.”

I am an autism specialist with 37 years of experience,” wrote Ruth Weir Prystash. “If you and your family come to Southern California, I will help you find services for your son. And if you are close enough, I will work with him myself. I will make sure he gets the therapy he needs for free.”

I am a speech therapist and work with children with Autism,” wrote Elizabeth Sherman. “I can help from afar. Get in touch with me if you can.”

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The Touching Story Behind That Viral Photo of a Boy With Autism and Santa

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A photo of a mall Santa on the floor with a young boy with autism went viral this week, and now we have more details about their encounter.

Brayden Deely was diagnosed with autism when he was 3, and his mother Erin Deely told Today.com that she and her husband gave up their ideas of “perfect Christmases and perfect birthday parties” because of the sensory challenges their now 6-year-old son faces.

I thought we would never get those holiday pictures with him because it’s something he can’t handle – the noise, and the pressure,” Deeley added to People.com. “He gets anxious if you ask him to smile, it’s all too much for him.”

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Image courtesy of Autism Speaks / Maeghan Pawley
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Image courtesy of Autism Speaks / Maeghan Pawley

But thanks to Autism Speaks’ Caring Santa program, the Deelys were able to bring their son to the SouthPark mall in Charlotte, North Carolina, to meet with Santa in a much more relaxed environment. The private event gave the family a chance to hang out with Santa at their own pace.

Santa noticed Brayden’s hesitance, so he set a musical snow globe on the floor and went back to his chair. After a curious Brayden crawled over to the toy, Santa got on his belly too. “They didn’t even talk to each other, really, they just bonded and played, and Brayden started to be really excited and started looking at him and smiling,” Deely told Today.

“To be able to do something that other families do…normally a lot of things are harder for us as a family and we got to do the same tradition as everyone else, we just do it on the floor,” she told People. “I just want to hug this man. He’s so wonderful!”

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Image courtesy of Autism Speaks / Maeghan Pawley
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Image courtesy of Autism Speaks / Maeghan Pawley
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Image courtesy of Autism Speaks / Maeghan Pawley

The Deelys spent 20 minutes with Santa, and Brayden gave St. Nick a high-five before going home. “At the end, Brayden didn’t want to leave,” Deely told Today. “He kept saying, ‘More Santa.'”

santa-high-five

For more information on the Caring Santa program, visit the Autism Speaks website and check out the list of locations near you here.

Has your family had a memorable encounter with Santa? Tell us your story in the comments below (or send us a photo at [email protected]), and we may use it in an upcoming post on The Mighty.

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Nonverbal Boy Pens Must-Read Article About Autism

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Philip Reyes is a seventh grader at Heim Middle School in Williamsville, New York, and he recently wrote a piece about autism and communication for The Buffalo News. Reyes is nonverbal, uses Rapid Prompting Method (RPM) to communicate, and he hopes sharing his story will give other nonverbal kids the same opportunities as him.

“I am attacking the idea that autism is a bad thing that should be eradicated,” Reyes wrote. “For me, autism is a different way of sensing, moving and interacting with the world.”

“When people talked about my concerning behaviors in front of me I would feel embarrassed and pent-up shame,” he added. “I was made to feel horrible for my autism.”

Reyes didn’t start using RPM until he was 9, and he wrote that the results were life-changing:

I have been lucky that my parents never made the mistake of giving up on finding a way for me to communicate. I appreciate the value of communication because it allows a person to be known.

Before communication, I felt like a caged animal because I had no say in my life. Since finding my voice, I feel more human, as people listen to my words. Most people forget how lucky they are to be able to talk. I was not one of the lucky ones. But I was fortunate to learn to type to communicate. Through RPM, I learned to show I could learn normally and communicate.

It has been three years since I learned RPM. During that time I was able to switch from an autism school where I learned basic letters and numbers up to 5, to a regular public middle school where I am included in regular classes. I am with good teachers who understand me. I also have been able to try more new things like riding a bike and playing soccer.

You can read more of Philip’s posts on his blog, Faith, Hope, and Love…With Autism and be sure to check out his Facebook page as well.

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