All posts tagged: aspergers

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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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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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

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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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Poem: Can’t See You

Scott writes poetry and — through his poems — shares his experience of life on the spectrum. He is a great friend of our founding director, Dr. Margaret Bauman, and both of us are proud to share his poems with you.

Scott Lentine is a 25-year-old man with high-functioning autism (PDD-NOS/Asperger’s) from Billerica and summer resident of Fieldston Beach, Marshfield. Scott graduated from Merrimack College magna cum laude with a Bachelor’s Degree in Religious Studies with a Biology minor. Currently, Scott is an office intern at the Arc of Massachusetts in Waltham, where he tries to persuade lawmakers to pass key disability resources legislation to improve the lives of people with developmental disabilities.

Scott is interested in data clerical entry duties, hospital settings, autism non-profit organizations, and research type work. He even got a support letter email from President Obama for autism advocacy! Scott’s interests include poetry, politics, music, movies, science and medicine, various religions, traveling, going to Boston, dogs, and the beach.

Can’t You See

Can’t you see
I just want to have a friend
Can’t you see
I need the same connections in the end

Can’t you see
I want a good job
Can’t you see
I need to have stability and dependence and part of the general mob

Can’t you see
I want to be independent on my own
Can’t you see
I want to be able to have my own home

Can’t you see
I want the same things as everyone else
Can’t you see
I want to be appreciated for myself

~

Scott and his brother at a Boston Celtics game

theautismresearchfoundationPoem: Can’t See You
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