All posts tagged: autism

Walking Across America for Autism

Would you believe it if your grandparents promised to walk across America to bring awareness to autism?

For Jackson, Elijah, Quinn, Grace, Nola, Addie and even baby Max, thinking Mema and Pappy were going to walk all that way — 2437.7 miles to be exact — seemed crazy. But it’s true!

Dan and Mary Beth Reardon, fondly known as Mema and Pappy, are taking off on a great adventure to meet families, therapists, doctors, teachers, mentors, and, most importantly, the individuals who experience autism in all its forms everyday.

danmarybeth

Their goal is to document their journey — backed by the idea that “you don’t know someone until you walk a mile in their shoes” — and share it with the rest of the “typical” population that needs to understand the growing and changing needs of the autism community so that they can be positive changemakers not just for people with autism, but with people with autism.

Their secondary goal is to promote inclusion programs, such as Athletes 4 Autism, by raising $50,000 along the way. These funds will be used to open up more free, seasonal sports clinics across the United States. How awesome!

You have to check this out for yourself. See the video and share their fundraising page here: www.gofundme.org/thewalk

theautismresearchfoundationWalking Across America for Autism
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Just Like Your Favorite Song

The magical moments we have with our Lil become just like your favorite song: you can’t help but play on repeat. They become a precious gift we can share with Lilly’s ever growing team of family and friends, enthusiastically living through every victory.

If you are present (and, most of all, patient), the intrinsic rewards of these moments — these seemingly impossible achievements — are the best gift to watch unfold and bloom. By presuming competence and providing opportunities, our girl is shining brighter than ever.

Our dear and beloved friends — two of the sweetest and selfless teenage girls around — let Scarlett borrow the coolest, brightest hot pink nail polish around. She couldn’t have felt cooler as she clinched the bottle so tightly on our drive home.

photo 1After a Daddy-Daughter bonding nail party, Scarlett proudly displayed her glowing toes for us all to see. Hours later, completely out of the blue, Lilly spoke the most beautiful sentence we have ever heard.

“I want on my toes color.”

Lilly’s autism may create a delay in time — a pause button, per say. The pause button holds for minutes, hours, days, months or even years. But the truth is that the pause button is not permanent.

Our Autism Angel is present, aware, listening. I noticed her staring at Scarlett’s toes all day, but it still blew my mind hearing that specific desire flow out of her mouth.

photo 2Cue nail polish party: part two. The happy hands, dimple bearing grin and ear covering humming ensued, and we cheered with delight right along. When nighttime came, I pressed her weighted blanket over her in bed, she leaned over and presented her hands, dainty as can be.

“Paint the hands.”

Every part of my heart wanted to jump out of her bed and give in, but my head knew better… “Tomorrow, sweetheart.”

Fast forward to this morning… My angel runs out of bed, climbs up with me and proudly states,

“Paint my hands.”

Yes, the pause button is short this morning. Will it lengthen again – of course. The point is to join her in her mysterious and magical world of autism.

And isn’t it a refreshing thought for us to all use that pause button from time to time?

theautismresearchfoundationJust Like Your Favorite Song
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A Most Precious Word

As a mother, you long for the day your baby can utter those three beautiful words: “I love you.”

It makes the sleepless nights and endless diaper changes seem like distant memories to most typical-raising mothers.

My path is different — changing and twisting — the end not always imaginable or clear. Lilly’s autism diagnosis led me and my husband on a journey of shifting visions and expectations that had been ingrained in our heads from the moment that ultrasound technician wrote “baby girl!”

The good, the bad, the ugly; it all shifts. I was a hands-on auntie and remember so vividly hearing my precious nephew call out for my sister when I babysat him. I would rub my belly gently, anticipating the day my baby girl would call out to me just the same.

But as unexpected as a scattered, quick-moving rain storm on a clear day, I had never imagined or prepared myself that this might not happen. And it didn’t. As a baby, and then a toddler in her crib, not even in pain or distress… Forget the happy babbling and beginning sounds of “Mama, Dadda” echoing from the bedside monitor… I just wanted that feeling of my Lilly being able to call out to her Mommy in time of need. But it never came.

When Lilly started therapy, her team took a close-up picture of me to include in her lessons. Every day, they would show her a picture of me until she could finally say “Mommy” by identifying my photo.

It may seem unnatural, but this is our world. We need to teach her in a way that she can understand. I still have that first picture and it still makes me tear up when I find her playing with it.

photo (2)Two years ago, my wonderful and caring husband made me a “Happy A Mommy’s Day” card. For about a year, Lilly called me “a mommy.” To her, I was a mommy; it makes sense. I should have been grateful, but every piece of my heart wanted her to know that I was HER mommy…

Today, I hear her soft, angelic voice say my name multiple times a day and it is the sweetest song to my ears. She has her share of pain — from GI problems to seizures — and I am forever grateful to the countless hours and years spent by her therapists teaching her the tools to begin to communicate her needs and pain to us.

My favorite line occurs in her midday therapy at home. She will ask her therapist to “go see Mommy.” My heart melts every time and I remind myself to tuck those warm and prideful emotions deep in my heart: to cherish and remember always.

On my ever-changing path of being a mom to the mom of an Autism Angel, I have learned to savor those moments as daily comforts: reminders to live in the present and celebrate her moments of joy and peace, triumph and accomplishment. Because they’re there, even if Lilly’s not saying them like we had always expected to hear them.

I put no agenda or pretense on holidays; waking up on Mother’s Day, I plan on reading this to myself and smiling, because, for the most part, it will be just another day in our autism house… Filled with highs and lows, smiles and tears, but I will be grateful and reminded of the long road it took for my precious babe to utter her first “Mommy.” And, for me, that will always be enough.

— Michelle Steiner, recurring contributor


happymothersdayWhen you’re doing your Mother’s Day shopping this year, consider a gift that gives back to the autism community and acknowledges that you see the challenges and successes of your loved one every day. Purchase jewelry from the “I See You” collection and 20% of your purchase goes to programming at The Autism Research Foundation.

Have stories like Michelle and Lilly? Share them with our autism community to inspire others as we inspire you. Email hello@theautismresearchfoundation.org to get the conversation started today.


theautismresearchfoundationA Most Precious Word
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An Open Letter to Kelly Landrigan, Communications Executive

Kelly1

Kelly —

You emailed us 3 years ago asking to do a journalism class writing assignment on our Athletes 4 Autism (A4A) program. We bet you never expected that you would be sitting where you are today as Communications Executive for that same charity. Time has flown… (and, at so many times, so has our sanity).

Out of pure gratitude, we want to take a minute to jog down memory lane:

You wrote your assignment and you could have been on your merry way, but you chose to stay. You connected to our mission so strongly, that you gave Athletes 4 Autism a permanent place in your busy schedule and full heart.

kelly3We went to that assignment interview expecting to get a few others to look at our grassroots effort, but your interview went beyond that. You gave A4A a tool to share its vision with that assignment and you elected to be the lens through which others see that vision full-time. That was the greatest, most selfless gift we could have ever received and we know that we do not thank you enough for it.

Throughout these 3 years, you’ve worked for us in an internship capacity. That means you work for free: filling in to help wherever is needed, which usually ends up way beyond the scope of writing a press release. You are not incentivized by a paycheck, yet you donate every free minute of your time to us. You haul carts of basketballs, sing and dance at exhibit tables to get us attention, and hug and high-five every single kid that walks through our gym doors because their day isn’t complete until they’ve said bye to you.

Like a family member, you loved us and what we stood for, you defended us against all of the naysayers who called us dumb for not monetizing the program (capitalizing on the disgusting odds that 1 in every 68 kids will now have an autism diagnosis) and giving free lessons to everyone. And then you showed up to help us do just that — to help hundreds of kids in whatever capacity was needed with the hope of raising enough donations to just cover our overhead costs — no questions asked.

You are the definition of loyalty.

You see, the thing about internships is that you are supposed to learn from us, and in so many ways, we know that you have. But, due to your modesty, we are not so sure that you understand how much you have actually taught us.

For one, you have taught us about communications: that all of it — journalism, social media, public relations, etc. — is an exchange of information facilitated by listening and replying.

kelly2Listening can be done two ways. The way we understand it: you can either listen to hear, or you can listen to reply. Outstanding journalists — and people — listen to hear. You had no intention of replying with an opinion; you came to walk in our shoes — to understand as best as you could — by first listening to what we had to say and then translating it into an approachable medium for the public so that they could hear, too.

We believe you became a true journalist in that interview moment because you heard our mission and understood its value to the core: so much so, that you begged us until we took you on as an intern. We might have thought you were crazy then, but now we know you’re just crazy in love. (Beyonce would be so proud.)

Kelly, you are one of the most major parts of our program. Instead of coming in with opinions, you came in with work ethic. You showed up, shut up, and worked. With that silence, you have become the loudest voice for the charity. You are the reason people know who we are, you are the reason people know what we do, and you are the reason people know why we do what we do. That is the beginning and end to every charity and you complete us.

Thank you, from the bottom of our hearts, for giving so much of yourself to our autism cause. It hasn’t been easy, but it has been so worth it. We know we have found a forever friend in you and we hope you know you have found a forever home at Athletes 4 Autism.

We love you!

Kevin & Courtney

theautismresearchfoundationAn Open Letter to Kelly Landrigan, Communications Executive
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A Friendly’s Song

I feel like I have au-kward moments every other day, rather than every week. This makes sense, though, considering I have two twin sisters with autism that are very vocal, charismatic, and outgoing.

Luckily, this week was extra special. I went home from college for the weekend and went to Friendly’s with my mother, father, and sisters. We went at prime time: 12 o’clock noon when the restaurant was filled with children. Since most looked to be around age 12 and under, I assumed most of those children didn’t understand autism up-close — let alone from afar — so I was already preparing myself for their curious stares when one of my sisters was guaranteed to give them something to talk about! And she did: Emma gave them a fun-filled example!

Sesame-StreetMy sister Emma has been on a YouTube-kick watching this particular Sesame Street clip with lots of high-pitched singing. Emma is the queen of repetition, and decided not only to sing just as the characters do, but extremely exaggerated. It was like Sesame Street Live!’s Broadway show without costumes. Needless to say, we all got the deer-in-the-headlights stares from the kids and perfectly practiced eye rolls that we were waiting for from the parents. But, oh, how my family laughed at her on-point spontaneity! For a moment, I wished I had the courage to entertain via restaurant cabaret, too.

And you’re welcome, parents. Your children got a free show with lunch. 🙂

— Diana Alessandrini

theautismresearchfoundationA Friendly’s Song
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Poem: Acceptance of Autism

Acceptance of Autism 

Wanting to be free

Wanting to be me

Trying to make people see

And accept the real me

Some people think my voice is too loud

And that my mannerisms strike them as being odd

This perception of me by others keeps me feeling blue

But there are plenty of struggles in life that I must get through

I am determined to show my critics my true personality

Hoping that people move away from their narrow-minded mentalities

I want them to know that I am a bright young man

Who is willing to take on as many challenges in life as I can

— Scott Lentine, a smart, poetic, and inspiring 26-year-old man who happens to have autism

theautismresearchfoundationPoem: Acceptance of Autism
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Life Lessons from Emma and Olivia

I was sitting in my English class senior year of high school wondering what I could possibly write about. College essay? What does that even mean? What do they want me to talk about, myself? Everyone told me that I had it easy because I can write about my sisters because they have autism. I figured they were right, leading me to leaving my essay to the last minute (as per usual), thinking I was going to be able to breeze right through it because of course, I had so much to write about.

As I sat down that night to write the easiest essay of my life, I suddenly began to panic. I had absolutely nothing! How could it be that I had nothing to write about? When I say nothing, I mean less than what I thought was nothing when I went to write about Lord of the Flies. And that was a bad essay.

I sat there for what felt like hours trying to figure out what the heck was going on. I played around with many ideas; maybe I just didn’t want to go to college or maybe it was the fact that my teacher was so annoying she made me want to hide under my bed every morning. I even asked my parents why I couldn’t figure this out and they told me that I just needed to think about it, that I’ve learned so much from my sisters and that there is going to be plenty to write about. It would come to me. I figured this was true, and took a couple days to think on it and took the hit on the late deductions.

Well those days went by fast and I was still thinking. I had come up with a few ideas but they all felt forced, as if I had only read the Spark Notes on the book of my own life. I went on to write my essay about what I thought was what I had learned from Emma and Olivia. It hasn’t been until recent years that I realized that I wasn’t trying to avoid college or my teacher, having nothing to write about was absolutely the case. I hadn’t learned anything from Emma and Olivia, and I never have.

I can’t remember my life without my sisters since I was only two when they were born. Everything I am comes from them. All aspects of my life surround them. I’ve never directly learned anything because there isn’t anything I do that isn’t influenced by my sisters. I eat healthy because I want to be able to keep them healthy and be around for them into late life. I major in psychology because I want my life to have its purpose in finding ways to better theirs and many others lives. I stayed forty minutes from home to go to school because I can’t be away from them for too long without feeling like I’m missing something.

I know this isn’t the case for everyone. Some people haven’t always had his or her sibling around since birth, and there are many amazing things that come with that. Maybe I would have had some serious life lesson business to talk about in my college essay if that was my case. But for me, it’s not like that. For me, I almost feel like I have a sixth sense. Like I was born with something that most others aren’t. It’s not something I can describe, but if you have a similar situation, you know exactly what I mean.

Needless to say, my college essay wasn’t exactly as deep and thoughtful as my previous words. In high school, my brain just didn’t work that way. I didn’t know then that what I felt was my lack of motivation was the pure fact that I haven’t learned from my sisters, I’ve lived through them.

theautismresearchfoundationLife Lessons from Emma and Olivia
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Moving Forward by Looking Back

As our inclusion program Athletes 4 Autism gears up for an exciting 2014, I decided to take a look back at one of the first A4A events that I myself experienced firsthand. I will never forget the feeling of overwhelming pride I had not only for my school, but also for this organization. As you will read, the power of a smile really does go a long way. 

– Kelly

Looking Back: How the Power of a Smile Transformed “Spectators” to “Athletes”

On Sunday, April 15, 2012, the basketball court in Boston University’s Case Athletic Center buzzed with excitement, as smiles danced across the faces of student-athletes and children alike. Athletes 4 Autism (A4A), the flagship inclusion program of TARF, had teamed up with Boston University to participate in a school-wide community service initiative. This Global Day of service event was designed with multiple goals in mind: to introduce families to the organization and to give Boston University athletes a chance to participate in a fun-filled charitable event. At this family-friendly day, A4A was out to prove that “life isn’t a spectator sport.”

The afternoon featured skill stations run by volunteers and athletes from various Terrier teams. Families and volunteers witnessed what some people would consider a “disabled” child succeed at what a “neurotypical” child can struggle with on a daily basis: conquering uncomfortable social situations. With the goal of bringing everyone together in friendship through sport, areas including “soccer shots” and “ fastest pitch” allowed participants to meet potential “mentors” while learning about what sports were offered through the program. Participants could play at a challenge course with members of the women’s lacrosse team, shoot some hoops with the basketball team, or even score a few goals on the nationally ranked men’s ice hockey team.

Perhaps the most rewarding part of the afternoon was witnessing student-athletes connect with the children and their families. It was easy to find volunteers striving to make sure everyone felt comfortable at the event. I watched as Sydney Godett, a member of the women’s lacrosse team, reached out to an uneasy little boy named John who was desperately clinging to his father. Unlike the rest of the happy attendees, John was not smiling. In a matter of minutes, Sydney made him feel comfortable in this strange environment by offering a warm smile and a helping hand.

SydneyandJohn

Soon enough, they were facing off in the challenge course, not a shred of anxiety apparent on John’s exuberant face. Suddenly John beat Sydney to the finish line, a moment so pure and so full of joy that it brought a smile to everyone watching the race. “We were told not to be alarmed or offended if the children didn’t respond right away,” said Godett. Luckily for both Sydney and John, a lack of connection did not exist; in fact, they seemed to be quite a team.

Because A4A is open to children both on and off the autistic spectrum, there was a strong mix of families with children both on and off the spectrum, showing that children of every capability can successfully coexist when it comes to athletics. Cathy Mealey, the mother of both a child with autism (Liam) and a child without autism (Grace), was thrilled when she learned about A4A’s open event. “We make an effort to take Liam into the community as much as possible, and we try to find ways to get both him and Grace involved together.” Mealey believes that the key to Liam’s success is “all about finding the right partnerships and the right niche.” She notes that her son “has always been drawn to sports,” so this event was a perfect match for Liam.

As A4A’s Global Day of Service event came to a close, John stood at half court, asking members of the Men’s Ice Hockey team to play some basketball with him. In his eyes, these boys were not the star athletes of the Boston University community. He simply saw Wade Megan, Sean Escobedo, and Ryan Ruikka as big friends for him to play with. In one afternoon, John transformed from a “spectator” to an “athlete.” Little did he know, he was not the only one smiling now.

theautismresearchfoundationMoving Forward by Looking Back
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When People Turn into Monsters

Since I first figured out that my sisters were different, I knew that there would be times when other, typical kids wouldn’t understand. I feel extremely lucky that my parents explained to me on multiple occasions how to deal with the hurt that comes from the teasing and bullying of Emma and Olivia from their peers, even strangers.

Even though I had this ingrained in my head, it still came as a shock to me when grown adults had the audacity to say something mean, not just rude, about or to my sisters. It would hurt to the point where I would cry to my parents because I didn’t say something, and felt like I wasn’t doing the right thing for my sisters. There was one particular situation that will always stick with me for the rest of my life.

When I was in high school, I drove my neighbor Hanna* to school when I got my license. She was much younger than me, so she enjoyed being able to talk about all sorts of things before we got to school. She was just out of middle school and loved my sisters. She had been in the same middle school with them for a few years after I was. One day (I don’t remember how), we got on the topic of how I felt when Emma and Olivia were teased.

She started telling me about one day when she was in Spanish class with Ms. Torres*. Ms. Torres was one of the meanest teachers I had ever had in my entire life. She not only told people in my class personal information about my life, but also made me cry when I told her about it in privacy.

Hanna began telling me that on this day, my sisters were being wheeled in their chairs down the hallway by their aids, and were repeating something they had heard in a movie or on YouTube. Whatever the girls were repeating, it called for them to be loud. Not ones to be shy, they were yelling whatever it was that they were repeating that day. Hanna was in Ms. Torres’ class down the hall, and when Ms. Torres heard the yells, she jumped, rolled her eyes, and laughed sarcastically with the kids in the class. Hanna also mentioned that she said something along the lines of “Well, that’s annoying.”

Now, maybe some would think, “Okay, she was just trying to avoid the situation or lighten the mood,” but I knew this teacher too well to kid myself. She truly thought that it was annoying, and was not about to explain to the class what the noise was or who it was coming from, because that wasn’t who she was. She was a mean lady, and I knew she didn’t “approve” of my sisters.

Later on that day, I told my mom the story. My mom knew about the times in middle school that this teacher caused me grief, and had to speak to her on multiple occasions. She didn’t have much of a reaction – she kind of just shook it off and that was that. I was so mad! I asked her why she didn’t go down to the school and say something, or even call or email this evil lady! What kind of example is that to all of the other kids in the class?

She told me it didn’t hurt her, and people like Ms. Torres would never hurt her, because she knew that these people probably have just has much hurt in their lives as I was feeling at that moment. How were we supposed to know if she was going through a rough time in her life? How was I to know that she didn’t feel this hurt on a daily basis?

My mom did end up saying something to the guidance counselors and the principal, but didn’t make it her job to go and get angry with Ms. Torres herself. To my mom, she wasn’t worth her time. Administration handled it.

Although not at that moment, I came to realize my mom’s point. Even though I’d still like to go tell off Ms. Torres, I see now that people like her can’t hurt me. I have so much happiness in my life because of Emma and Olivia that no one’s comments or opinions can take any of it away.

* denotes name change

theautismresearchfoundationWhen People Turn into Monsters
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Poem: Fall in New England

Fall in New England

Fall is such a beautiful time of year

There are plenty of sites to see here

Leaves with bright colors orange, yellow, and red

Signaling a change that the year is near the end

But fall is also a time of new beginnings

It is a time to start to learn new things

A time to look at the world in a different way

A time to learn new strategies to handle each day

Let’s take this time of change

And focus on new ways to think

Let’s give individuals with challenges a new look and rearrange

And find a common link

Fall reminds us to turn over new leaves

To think about starting new goals to achieve

I call on the world to change perceptions

And give all of us a new reception

I want to make new friends and create a new start

I like to develop new relationships with an open heart

I hope to be accepted for the person that I am

So people can understand a true autistic man

— Scott Lentine, a smart, poetic and inspiring 26-year-old man who happens to have autism.

theautismresearchfoundationPoem: Fall in New England
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