The 4 Words From My Son With Autism That Have Saved Me From Worry

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“Not now, but later.”

If only I heard those words 10 years ago. If only I believed those words 10 years ago. If only I tattooed those words backwards on my forehead 10 years ago so every time I looked in the mirror they would not only have hidden my deepening frown line, they would have hidden the fear in my heart from the only person who saw it: me.

But I didn’t, because I wanted “now.” “Later” felt too late.

super bowl sign

I heard those words loud and clear just a week ago when Ryan got invited to a Super Bowl party, his first invite by a classmate in almost 10 years. To say Ryan was ecstatic is an enormous understatement. He was fighting back tears when he shoved the invitation in my face! What mattered most was this nice girl handed an invitation to him.

On the Sunday night before the big party, Ryan jumped up on my bed and reminded me where he would be “seven nights from tonight.” Then it was my turn to fight back the tears. My beautiful 14-year-old son looked at me, somewhat sheepishly, and asked if I would help him “practice” some things he could talk about with the party guests. I was flabbergasted. For years we have tried to role play, “practice” and rehearse various conversations, what-if scenarios and what-to-expect moments, which Ryan often refused to do. However, on this night he said, “I don’t know what to expect at a Super Bowl party, and I want to be prepared.”

After I recovered from the shock and awe that this kid bestows upon me with increasing regularity, I told him there was nothing I would rather do. He then jumped off my bed, bounced away and shouted, “Not now, but later.” And there it was. Such a simple concept in four short words — four words that could have saved me such worry and heartache had I only trusted those words for the past decade, had I only trusted him.

“Not right now, but later” could truly have been the mantra, the theme, the words to live by for our journey. As I watched him happily bounce out of my bedroom a few short nights ago while humming the latest Minecraft music, I realized he has been “saying” those very words for years. I just wasn’t listening.

“Now, I want you to learn to tie your shoes so you are ready for kindergarten,” right after we read this book, practice with this pretend shoe in the book, and after your big brother Kyle shows you how he does it. Ryan had a difficult time and became frustrated. “Not right now, but later,” because it didn’t matter how cool the book with the fake shoe on the front was or how much he idolized his brother, Ryan’s fine motor skills were still developing, so “now” was not the time for shoe-tying (or shirt-buttoning). “Later” came, later.

“Hey buddy, now I want to hear Ryan talk instead of [insert any character on TV he was scripting nonstop at the time]. I like Ryan’s voice so much better,” I cajoled. Ryan went about his latest script in his latest voice as if he hadn’t heard my request. The thing is, that was Ryan’s voice. He was communicating with me in his own way, and if I would have heard “Not right now, but later,” it may have sounded remarkably like “Dora the Explorer,” but I wasn’t listening. “Now” I do hear Ryan’s voice, along with the latest Minecraft YouTuber he is obsessed with, and no matter who I hear, no matter what is said, I listen.

“Wow! I can barely see your eyes because your hair is so long. We have to go for a haircut now,” I whispered in his ear while he was almost asleep so I could live with myself knowing I told him, but hoping and praying he didn’t really hear me so I wouldn’t have to hear the cries, the worries and the fight to get him in the car until “now” actually meant now. The tears, the cries, the heartbreaking “no, no, no” with every piece of hair that floated to the ground was Ryan’s way of telling me “Not right now, but later.” The snip, snip, snip of the scissors was likely loud in his ears. The pieces of hair falling on his neck may have felt like shards of glasses poking in his skin. The different comb, the chair that lifted up and spun around, the numerous conversations happening in the salon all may have been too much for his overloaded sensory system. “Not right now, but later.” And as always, “later” came, with Ryan flopping in the salon chair and barking, “Just give me the usual,” because now he is prepared. Now he knows what to expect. Now he is ready.

boys shirts and pants

“Now that you are older, maybe you should wear clothes like a lot of the other middle schoolers,” I tried as Ryan walked out the door in silky track pants that I have such a hard time finding now that he wears men’s sizes. The same clothes day in and day out was Ryan’s way of telling me, “Not right now, but later,” because those clothes made him feel comfortable and the predictability of how those clothes felt on his body was one thing he could count on not to change throughout his day. Then one day after a shopping trip at the mall, other words came that I was not expecting, beautiful words of self-awareness. “I wish my body wasn’t such an a*sehole and I could wear different things. I really want to, but my body won’t let me. My brain is highly connected to my sensory system, more than it is for my friends.” I was speechless but able to recover enough to take in this beautiful moment and remind Ryan of all the things that came “later” for him, when his body was ready.

And just two weeks later, when he felt his body was ready, came a request for khaki pants because he was ready to try them. “Later” came today as he walked into school wearing American Eagle khaki pants and a brand new Hollister shirt. “Not right now, but later,” on his terms, in his way, when he was ready, not me. And that is exactly how it has been all along and exactly how it should always be.

“Not right now, but later” has proven true time and time again. “Now” was what I needed, what I wanted, at a time I thought it should be happening. “Later” was what my boy needed, what he wanted and what he was telling me all along. Ryan may have never said those exact words to me until just a few days ago, but he has been telling me for years. I just hate that it took years for me to hear him, to understand him and to respect his time frame. I hope one day he forgives me and understands that “not right now, but later” has rung true on this journey for me as well.

Follow this journey on The AWEnesty of Autism.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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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12-Year-Old Creates Award-Winning App for Sister With Autism

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Eashana Subramanian’s sister Meghana has autism, and after witnessing firsthand some of the challenges their parents faced while trying to organize Meghana’s daily activities, Eashana wanted to do something to help. The 12-year-old teamed up with students at the Montgomery County Adventure in Science Club in Maryland and developed the AutBuddy app, which enables children on the autism spectrum to communicate with their teachers and parents and better maintain their schedules at home and at school.

The mobile app allows parents and teachers to message in real time, and it helps students focus on assignments with audio and visual aids. Teachers and parents can create daily activity lists and track the child’s progress with the tasks, and upon completion of certain lists, kids are then rewarded with bonus points to play their favorite games and songs.

“My parents struggle with giving [Meghana] tasks because they don’t know what’s happening in school because the communication is not that great between the teachers and parents,” Eashana told ABC News. “I looked at all these problems and said this had to be solved somehow or made easier for my parents. So I thought of AutBuddy that could have features to fix the problems — not fix but help.”

12-year-old Eashana said she noticed how important it was for her 9-year-old sister Meghana to have a routine.So,…

Posted by ABC 8 News – WRIC on Tuesday, February 9, 2016

 

“Communication between school staff and families can be vital to a student’s success,” Wendy Fournier, president of the National Autism Association, told The Mighty. “I’m very impressed by Eashana and her fellow students for working on a solution to help kids like Meghana, and look forward to trying AutBuddy when it becomes available. Autism siblings are such an inspiration. They see first-hand the struggles of their brothers, sisters and parents and are making the world a better place for all of us.”

The Montgomery County Adventure in Science Club is a nonprofit group that brings students together through science and technology projects, according to its website, and Siva Reddy served as the advisor on AutBuddy. Earlier this month the group was one of eight student teams that won the Best in Nation honor, along with $20,000 at the annual Verizon Innovative App Challenge, according mcmcmedia.com, the website for Montgomery County Media.

 

The team will now work with members of the MIT Media Lab to produce the app, according to mcmcmedia.com, and once development is complete, the app will be available for download in Google Play store. In June the team will present the app at the National Technology Student Association Conference in Nashville, Tennessee.

h/t West Info

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Police Department Enacts Changes After Fatal Shooting of Autistic Man

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Police in Mesa, Arizona, are taking steps to better protect people with cognitive disabilities and/or mental illness in the wake of the death of a man with autism.

On Friday, Feb. 12, Police Chief John Meza announced the creation of a full-time crisis-response team and a “mental health advisory board” which will assist the police department in developing, recommending and reviewing polices and training techniques, AZ Central reported.

The crisis-response team will include four full-time detectives who will help patrol officers in challenging situations. Mesa police received 2,600 suicidal-person calls in 2015, demonstrating the need for a special unit, Meza says in the video below.

The announcement comes just a week after the death of Kayden Clarke, a transgender man with autism who was shot dead by Mesa police officers. Officers were sent to Clarke’s house on a suicidal-person call Feb. 4 and opened fire after Clarke, armed with a knife, charged them.

Clarke, 24, formerly named Danielle Jacobs, was known for a video he shared last year of himself being comforted by his dog during a meltdown. Millions viewed the clip, and it helped spread awareness about the role of an autism service dog. The video has since been made private.

“This tragedy highlights the increased need for first responder training to teach first responders to effectively interact with autistic and special needs individuals,” Dr. Julian Maha, founder and CEO of the autism nonprofit Kulture City, told The Mighty after the news of Clark’s death broke last week.. “The training will give them much needed tools to effectively communicate with autistic individuals, help keep both parties safe and hopefully prevent tragedies like these.”

The officers involved in the shooting were placed on administrative leave, which is standard for officer-involved shooting situations, reported ABC 15 Arizona. No officers involved were injured.

In addition to these changes, Meza also plans to increase the percentage of crisis intervention officers on patrol above the national average (20-25 percent of the officers on patrol) by the end of the year, AZ Central reported. The department has added eight hours of basic crisis training for new recruits, mental health refresher courses for current officers, and increased the number of first responders with training.

See Police Chief Meza’s statement in the video below: 

Related: Maryland Responds to Death of Man With Down Syndrome With Law Enforcement Plan

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I Used to be Nonverbal. 16 Years Later, I Was a Varsity Basketball Captain.

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One of the first role models I had in my life was Magic Johnson. As early as 3, I can remember watching him play with the Lakers and being completely transfixed by his play-making ability. People like Magic fascinated me and developed my interest in basketball.

Today, I can say basketball has helped me progress as a person on the autism spectrum.

young boy
Kerry as a teen.

As a kid I had significant challenges with social interaction, communication and gross motor skill delays. My parents, who I’ve always praised for helping create the wheel for me when services for autism were less known, decided to take my love of watching basketball and try to turn it into a love for playing as well.

When I was 8 playing pee wee basketball, I found out right away that basketball — and any sport — would be an uphill battle. Both my hand-eye coordination and my issues with balance kept me limited in my abilities to perform on the court. What kept me motivated though was envisioning myself doing the moves of other basketball players I looked up to.

I’d run to the three-point line while I was practicing some days, and as soon as I got the shot I would scream “MAGIC!” at the top of my lungs. Sure, 99 percent of those shots didn’t go in, but I found out rather quickly that I loved playing the game.

In grammar school, my opportunities to play were limited because my school didn’t have a basketball team. Once I got into a high school for students with learning disabilities, I found out that we had both a junior varsity and varsity team! I was ready.

I was going to be the Magic Johnson of our JV team, I thought to myself. Then tryouts came. I was a 5’10”, 230-pound kid wanting to play point guard while the rest of the kids were around 5’4″-5’6″. Within the first two sprints of the practice, I was already on the sideline out of breathe. Not exactly the MVP performance I was envisioning right off the bat. Three days later, I would find out I didn’t make the team, and my goal of playing high school ball was defeated.

That defeat, though, made me think back to Magic Johnson and everything he has been able to overcome in his life. I told myself in the mirror the following day that I was going to come back and make it.

Fast forward one summer, and JV tryouts were happening once again. This time I was 60 pounds lighter and had grown three inches. I had participated in basketball camps almost every day that summer while working on my gross motor skills at my occupational therapist’s office. I was beyond nervous. Would this be different than last time?

Luckily for me, thanks to my progress, making several basketballs during the tryout and pushing my body to the limit, I got a coveted spot on the JV team! I made it. Two years later as a senior after continuing to work on my craft, I was selected as varsity captain and had made some of my first friends ever.

Looking back, this passion for sports is what I advocate for when I talk to families now. I feel there are so many benefits to sports. I was able to become very good with my hands because of basketball and overcome many of my motor challenges. I was also able to find my niche when it comes to social interaction. The advice I’d give to other families out there is to give sports a try with their loved ones. The results I’ve seen are amazing. Even if it’s not sports, find that niche they love and help them pursue it everyday.

As for my future with sports, I am now a huge college basketball and NBA fan. I love watching my alma mater the Seton Hall Pirates play, and also my Los Angeles Lakers. I’m also a huge fan of Coaches Powering Forward for Autismwhich is an initiative to bring autism awareness to college basketball. Now in its third year, I’ve been so happy to see two of my favorite passions — autism awareness and basketball — come together to make a difference for our community.

A version of this post for appeared on KerryMagro.com.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. 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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How My Autism is an Advantage

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Hello everyone, I’m back with a new video for you. Today, I want to talk about how my autism gave me an advantage in my life. What’s one time autism has been an advantage in your life? Share in the comments below!

If you have any ideas for videos you’d like to see, please contact me at [email protected].

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There’s Nothing Wrong With Autism

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I have autism. My brain is wired differently than the neurotypical brain, but I live in a world created by neurotypicals. I need support to deal with the sensory issues that arise in non-controlled environments. I work from home to circumvent both social and sensory differences.

But I can also solve problems better than the hundreds of people I work with because of my wiring. I’m the one they come to for help. I can see the forest as well as the trees. I can make connections where others cannot. I can understand complex processes in minutes whereas it takes others weeks or months.

Autism versus neurotypical. Blue eyes versus brown eyes. Either give us support to live in the neurotypical world and reap the benefits of our differences, or focus on making us conform and get nothing since all our energy will be focused on being like you instead of being ourselves. Your choice: support differences or conformity. We only have so much energy to spend each day, so you have to pick one.

Before you decide, what makes you happier? Being yourself, or being what others want you to be? I think the world would be a much better place if everyone, autism spectrum and neurotypical, could just be themselves.

There’s nothing wrong with autism, but people’s perception that everyone should be shoehorned into the same societal role has to change before the world can realize that.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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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