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.'”

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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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16 Memes That Nail How Autism Parents Feel About Food

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Parents of children with autism are like all parents — they want the best for their kids. That means you can often find an autism parent bending over backwards to find (healthy) food their kids actually want to eat. Because of sensory issues relating to food, as well as a need for strict routines, children on the spectrum can sometimes have a sensitive palate and specific meal requirements that restricts the number of foods their parents can offer them.

Our autism parents will do whatever it takes to keep their kids happy and healthy. That isn’t always easy, but, finding humor in those challenges can be a great way to cope.

We asked our readers who are parents of children with autism to share some of their favorite memes about food-related issues their family faces every day.

Here’s what they shared with us:

1.

Autism Parent shopping when they find something their child will eat
Submitted by Liz Stanley

2.

Your face as you attempt to process the reality of gluten free, casein free, soy free, etc for your child
From Autism Odysseys Facebook page. Submitted by Stephanie Walrath Shultz.

3.

How I feltThis weekend Posted by Autism Mommy on Monday, November 23, 2015
4.
Taste the Rainbow (skittles) but only after they have been put into color coded groups and looked at for half an hour
From Autism From a Dads Eye View. Submitted by Kevin O’Neill.
5.
an autism parent's face when told she won't be able to tell the difference between food brands
Submitted by Grantham Autistic Information Network (GAIN) Facebook page
6.
you might be an autism parent if you know what brand loyalty is
By My Crazy Little People Facebook page. Submitted by Gena Noslen.
7.
8.
Autism rule #20 when offering your child a new food stealth observation may be preferable to direct observation
From Autism Odysseys. Submitted by Stephanie Walrath Shultz.
9.
the perk of having a kid with food aversions? you usually dont have to share your food
Submitted by Gena Noslen
10.
how autism parents look when our child eats a new food (shocked)
Submitted by Liz Stanley
11.
autism household's menu: chicken nuggets and pizza
Submitted by Stephanie Walrath Shultz
12.
Can anyone relate? LOL! Posted by Autism Odysseys on Tuesday, November 24, 2015
13.
nobody hides vegetables better than an autism parent
By Autism From a Dads Eye View Facebook page. Submitted by Kevin O’Neill.
14.
If you mess up our pizza order one more time, I will hunt you down and find you in 30 minutes or less
Submitted by Melissa Cote.
15.
You can never find your shoes when you need them, yet you can find a single piece of onion hidden in your dinner.
Submitted by Liz Stanley
16.  
LOL!TY Ink for Autism Posted by Rain Mom on Tuesday, November 17, 2015
  What would you add? Let us know in the comments below.  Related: 30 Autism Parents Describe Their Kids’ Bizarre and Funny Eating Habits

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To the Person Who 'Can't Believe' I Had Another Child After My Son's Diagnosis

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A couple years ago, I was telling an acquaintance about my son Treven’s autism diagnosis. Then I mentioned that I also have a younger son. The person’s comment didn’t register as offensive at the time, but now that I think back on it, I wish I could go back in time and set this person straight.

The comment was, “I can’t believe that you had another child after finding out your oldest has autism.” 

Well… for one thing, Treven was only 13 months old when we found out we were expecting his little brother, and Treven hadn’t started to show any signs of autism yet.

But, that’s beside the point. We decided to have another baby right away because Treven was a dream baby. He slept through the night at 6 weeks old, and he was happy and loving and hardly ever cried. He actually made my husband and I want another baby right away because he was so easy to love and such a bright spot in our lives. Furthermore, if we would have known about Treven’s autism, we still would have had another child.

Not that I should have needed to explain any of that. It always amazes me when people, especially parents, think it’s OK to make a comment like this.

I try to be understanding of other people’s ignorance, and most of the time I try to assume they probably don’t know what else to say, so an awkward comment slips out. And I try to put myself in their shoes. I guess that is one of the traits I’ve inherited from being a mother of a child with special needs. I try to give everyone the benefit of the doubt, and I try not to judge.

This particular comment is only one of many I’ve heard over the years in regards to my son’s diagnosis…

“Maybe he’s just deaf.” (My son is nonverbal.) “Are you sure he has autism?” “You’re not going to medicate him, are you?” “Well, why don’t you just medicate him?” “Why doesn’t he eat healthier?” “He’s too thin.” Etc., etc., etc.

Then, in the quiet moments of the night (if it’s a “good” night), I am kept awake by the “little comments.” They run rampant through my mind. And they hurt. And they make me question myself. And I worry about making the right decisions for both my child with special needs and my neurotypical child. And that is not something that a parent, especially a parent already on the brink, should have to ponder.

No parent should have to rationalize or explain their parenting decisions to anyone. As a special needs parent, I’ve had many feelings of, “I’m damned if I do, and I’m damned if I don’t.”

The bottom line is this: Treven’s younger brother is his best friend. And nothing about Treven (not even his worst day with autism) would ever make us not want to parent him or any other child. Autism is hard, but I would never say, “I sure hope we don’t have another kid like him.” Even thinking this breaks my heart.

Treven is an amazing gift, and we treasure him for the wonderful person he is. He’s the best part of me and the best part of my husband combined, and there has never been any regret with creating him, just the way he is.

 Follow this journey on Love Needs No Words — Chuckie’s Life With 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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