The Story of Me

My name is Brian. I am twenty-four years old and I have autism. Why am I telling you this? Because it will be important for you to understand my story. When my family first found out I had autism they were told I would never walk or talk and that it was my parents fault. The doctors told them I would never live a normal life. Well, they were right, my life isn’t what you might consider normal but it is awesome. I am here to tell you why it is so awesome. I was born into the most wonderful family. If it weren’t for them I wouldn’t be sharing my story with you today.

Growing up I always knew I was different but my family made me feel totally normal. For a long time I thought it was completely normal to scream when the washer beeped or when I had enough to eat. It wasn’t until I saw my brother grow up that I realized my normal was different than his. That was the first time I realized my life would never look the same as his. You may think I sound bitter but I am not at all. In fact I am thrilled to be here with my best friend sharing my story.

Always being in control of your body is something people take for granted. Autism robs me of my control. You probably think that sounds crazy, as most people do. But autism is a crazy thing. The first thing I want you to know is this is not a plea for your sympathy but an opportunity to listen to what autism really is. So here we go!

For many years people could not understand why autistics lacked total control of their body but assumed they lacked control of their minds as well. Well then some really smart people decided to study the brain and figured out that a deficit in one area does not impact the other. That led autism experts to new research that revealed they aren’t the experts after all!

I have spent most of my life mourning the lost of my voice thinking I would never see it again but I was wrong. A year ago my mom found a program that allows me to point to letters to spell and communicate my thoughts. When she realized how wonderful this program is she knew she had to spread the word. My dad and mom have dedicated their lives to helping me. I am particularly lucky to have the greatest dad. If it weren’t for them I can’t imagine where I’d be. The first person always to know about changes in my life is Emily, my longtime staff and best friend. Together they always help me to grow.

So that leads us to where we are today. Over the past year Emily and I have worked tirelessly to learn to communicate with each other and spread awareness. Now I think it is time to help others understand why this project is so important to me. I believe every autistic deserves a voice. I want to help them find their voice! With the help of my family and Emily I will make this dream a reality. I will use the power of my voice and the help of my sidekick Emily to make this vision come to life.

So now you may be wondering what you can do. It is pretty simple actually: Treat autistics with respect and dignity. Trust me, it makes a huge difference. We can truly change the way people perceive autism and it starts today!

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My Barbershop

Barbershops are a staple in our communities, something we are all familiar with. But what you may not know is the depth of these establishments. They are referenced as early as 296 BC but the barbershops you are familiar with began to make their mark in the 19th century, specifically with the African American communities. The shops provided opportunities for work, giving black men the chance to be entrepreneurs but it doubled as a place to gather. And that is what I am here to talk about with you.

During a time when society had little respect for the black community they chose to find strength in community with one another. They gathered through shared experience and grew stronger by connecting with each other. The shops were a safe place. A place they felt heard. I can’t begin to understand the fear they experienced on a daily basis but I can fully relate to the need to feel heard.

The Gang got together as we do every month and explored this very topic. It got me thinking that Tom and Emily [our communication partners] have allowed us to create our own sort of barbershop. We all came together through the shared experience of finding our voice. We gather as friends to talk, to listen, and to share ideas. We have seen first hand the strength that comes from connecting with others.

My dear friend Alex shared with us something powerful…”Groups are designed by human nature. We are not meant to be alone”. This resonated with me deeply. We are NOT created to be alone. We have an innate desire to connect. Look throughout history and you will see this time and time again.

I will close my thoughts by sharing my truth. My life is made full by my relationships with others and I am forever grateful for Alex, Nasser, Sarah, Kevin, and Chris for being my barbershop.

Bell Let’s Talk

Today is Bell Let’s Talk Day.

Bell Let’s Talk is a campaign run by Bell Canada to help end the stigma surrounding mental health, and to raise awareness and funds for mental health initiatives. Brian and some of his friends live with anxiety every day of their lives. When they learned about Bell Let’s Talk Day, they wanted to share their stories with you.

 

STRESS HAS RULED MY LIFE FOR YEARS. I CANNOT GO FOR MINUTES WITHOUT WORRYING ABOUT WHAT IS NEXT IN MY SCHEDULE. I LIKE TO GO TO THE MOVIES BUT I CANNOT FIGHT THROUGH THE ANXIETY OF WHAT IS NEXT. I KNOW WHAT IS SCHEDULED BUT MY BODY WON’T LET ME STORE THE STRESS IN HIDDEN CONTAINERS IN MY MIND. THIS IS NOT TO SOLICIT YOUR PITY. I WANT TO SHARE THIS SO OTHERS WILL MAKE SURE THERE IS NO ONE LIVING ALONE WITH THIS FIGHT. 

-K

A: I want you to take a moment and step back. Look at the space you are in.

N: The walls may feel like they are closing in but they are not.

A: They are just material that you can tear down. So put your arms out at your sides.

N: You are strong. You are capable. You are here for a reason.

A: Take all the strength you have and push down those walls.

N: Now look at the opportunities in front of you. You are limited by nothing.

A: The only thing stopping you is you.

A: So be careful and be brave. It’s a big beautiful world out there. And it’s waiting for you.

-A & N

HELLO TO EVERYONE! MY NAME IS BRIAN AND I HAVE ANXIETY. I BATTLE IT DAILY TO THE POINT WHERE I AM EXHAUSTED. IT CONTROLS EVERY PART OF MY LIFE. I NEED A SCHEDULE TO KEEP IT CONTAINED. EVEN THAT DOESN’T ALWAYS HELP AS MUCH AS MUCH AS I’D LIKE IT TO. I WANT YOU ALL TO KNOW THAT YOU DON’T HAVE TO FIGHT ALONE. YOU HAVE NO REASON TO INTERNALIZE YOUR DEMONS. THERE ARE PEOPLE WHO LOVE YOU AND WANT THE BEST FOR YOU. YOU ARE STRONG. YOU MATTER.

Spelling to Communicate Info Session

s2c info revised screenshot

Next Monday, January 28th, the Inside Voice program will be hosting a Spelling to Communicate Info Session for anyone interested in learning more about the method. Tom Foti and Emily Pinto will deliver a detailed presentation about the Spelling to Communicate method. Participants will be able to see the method in action once the presentation is completed.

Seats are limited, so contact insidevoicehq@gmail.com today to reserve your spot!

Happy New Year!

Happy New Year Everyone! What a year it has been. I take this time each year to sit back and reflect on what the past 12 months have brought. As with any year, 2018 had its ups and downs. But as always we emerge stronger. We are given an opportunity each new year to start fresh. To set new goals, to plan new adventures, to embark on new challenges, and to focus on self improvement. We are made to feel that our slate is wiped clean and we can start over! I am fascinated by this concept. With one stroke of midnight our vision for the future is given a new sparkle! I challenge you to take that sparkle passed midnight. Weave it into every new day. Sparkle through your ups and downs and cease the fresh start. Comment below how you sparkled in 2018.

-Brian

Against the Current

As communication partners, friends, and loved ones, we will never fully grasp how hard it is for our non speaking friends to spell their thoughts and beliefs.

But we can always gain a better understanding from them.

Kevin –  one of Brian’s friends and a guest writer of several posts here on Speak Without A Voice – shared his experience with us:

SPELLING BECAME [A] *NONDECLARATIVE [MEMORY]. IT WAS A SLOW BURN AS YOU KNOW. BUT IT WAS WORTH THE SCENIC ROUTE. WOULD YOU LIKE TO HEAR MY SIDE OF SPELLING? I CAN’T SPEAK FOR EVERYONE BUT IN MY MIND SPELLING IS LIKE GOING AGAINST THE CURRENT. I HAVE LEARNED HOW TO FIGHT AGAINST IT. BUT THE CURRENT IS STRONGER ON SOME DAYS. BUT I CAN STILL BEAT IT WITH WILLPOWER.

 

(*a nondeclarative memory is a memory that is done unconsciously, like throwing a ball or walking)

This Is Me

Brian and his friends have made incredible progress during the past year.

They have strengthened the foundation of their group – The Gang. They are advocating for themselves in ways they never dreamed, and some have even presented and talked to students and professors at colleges and universities.

For the last 11 years, the A.A.L.I.V.E. Organization has held its annual fundraiser named the “We’re Feelin’ A.A.L.I.V.E. Social.” A.A.L.I.V.E. – a grassroots organization – offers socialization and awareness opportunities to enhance the lives of our adult special needs community.

Inside Voice, where Brian and some of his friends partake in Spelling to Communicate sessions, is a program under A.A.L.I.VE. Leading up to the Social, The Gang said they wanted to make a video to recap everything A.A.L.I.V.E had done over the past year. Using the song “This Is Me” from The Greatest ShowmanThe Gang wanted to include both the Inside Voice community and greater A.A.L.I.V.E community. The Gang also wrote their own words of self-acceptance to further reinforce the theme of the song: Love yourself for exactly who you are.

Expressing Gratitude

It’s a special time of year. There is a new chill in the air and a familiar warmth in our hearts. It is also an important time of year. It’s a time to sit down and reflect on the most valuable aspects of our lives. To put it simply it is a time to express gratitude. I like to think I am a person who remembers to express gratitude in my daily life but the truth is I’m not. I get caught up in the trivial nature of my routines and responsibilities and I forget to think thanks for my many blessings.

I am sure many of you can relate to this feeling. It doesn’t make us bad people but it does give us something to work on. I read about the exercise of thinking thanks each week with Emily.  We began working on it about a year ago and we still have a long way to go. I want us all to work together to think thanks, starting today. When you are finished reading comment what you are most thankful for. Let’s share in our gratitude.