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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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.

Haunted By Fear

Gather round everyone and head my warning. This is the tale of Harold Jones, a man haunted by his fear of change. A man who fell silent in a time of great need. A man whose closed mind was his ultimate demise

It was a night not unlike any other night. Harold was closing the office and getting ready to head home. It was October and fall had brought a new chill to the air. But on this particular night Harold could sense something else. He took his usual route home, stopping to pick up milk at his wife’s request, and arriving home just in time for dinner. He went about his night and cozied into bed just shy of eleven o’clock.

Restless and blurry eyed he journeyed to the kitchen around midnight for a glass of water. He stopped dead in his tracks when he saw a faint figure moving through the house. A chill rushed through his spine and when he tried to move he was frozen. He cried out “Who’s there?!”

And no response.

His mind was racing but his body remained stiff, as the light of the full moon pierced through the window. A dark figure emerged and Harold’s body shook with fear as he slowly regained movement.

“Who are you?! What do you want from me?!”

The figure moved closer in total silence and Harold shuttered with fear. He pinched himself in hopes that he was dreaming… as the figure grabbed him and swept him into the night.

He regained consciousness in an odd yet familiar place. When he began to see more clearly he realized he was in his office. The halls were racing with people seemingly unaware of any strange occurrences. Then he looked at his calendar… October 30, 1994…something wasn’t right, he must be dreaming.

What was even more unsettling was the feeling of doom he felt deep in his stomach.  The figure appeared again, this time in a more human form, and seemed to communicate with Harold in a silent way. He expressed emotion and took Harold on a journey he could not yet understand. Harold was taken back in time, that much he knew, but the truth would soon present itself.

Harold was frozen physically but his mind seemed to be racing through time. He suddenly saw his life play out before him and he realized he had been a bystander. Given the opportunity to make a change, he chose to stay idle. And that choice was haunting him. Dizzy with confusion he was swept up again into the night and returned home. Harold would get no sleep that night.

When morning came it all came rushing back, the figure in the night had taken him on a journey through the past. He had shown him the power his decisions had on the lives of others. He saw the impact he could have and it terrified him. He knew he had a choice to make.

Harold was in a position of choosing whether or not to change the future for generations to come or remain silent…

Now I know you are expecting Harold to be brave and save the day but this isn’t that kind of story. Harold isn’t brave and he resisted change. And that choice would haunt him until his final breath… Will you be next?

My Identity

Kevin recently learned all about handwriting and why it changes as we get older. During a brief discussion, he learned that there is a method called graphology. It is the study of the strokes and shapes of letters. Graphologists say that this method can reveal certain truths about a person’s subconscious as well as their character.

At the end of the discussion, Kevin was asked the following:

 

What would you like your writing to say about you?

I’D WANT MY WRITING TO SAY THAT THERE’S MORE TO ME THAN YOU THINK. I AM AUTISTIC. YES. BUT IT IS NOT MY IDENTITY. I AM KEVIN. SOMETIMES I CAN EXPRESS MY THOUGHTS VERBALLY. BUT THIS BOARD IS MY VOICE. SO HERE IS ME. I LOVE BASEBALL. ROY HALLADAY IS THE BEST PITCHER OF MY GENERATION. MUSIC IS HOW I GET THROUGH DAILY LIFE. I CAN SMACK TALK WITH THE BEST OF THEM. MY FAMILY IS MY ANCHOR IN THE ROUGHEST SEAS. I AM KEVIN. AND I’M HERE TO SHOW THERE IS MORE TO AUTISM.

An Immeasurable Impact

It’s eye-opening as to how the little things in life can make such a big difference.

That is the overall theme of one discussion Brian had about baseball dirt. You see, the dirt you see at professional baseball fields is not ordinary. It is manufactured specifically for the major leagues, yet for the longest time, organizations didn’t pay much attention to it.

After the 2008 World Series, teams began investing in better dirt that was created to withstand the rigors of professional baseball. This investment has helped decrease injuries, postponements and has helped increase the level of play.

At the end of this discussion, Brian was asked about something he believes is small but makes a big difference.

Baseball dirt is something small that makes a big difference. Tell me about something you believe is small but makes a big difference.

OOO THIS IS GOOD. I HAVE SO MANY THOUGHTS. IF I HAVE TO CHOOSE ONE I’M SAYING THANK YOU CARDS. IT IS A LOST ART IN MY OPINION. IT DOES NOT TAKE A LOT OF TIME TO DO. BUT ITS IMPACT IS IMMEASURABLE. I THINK PEOPLE UNDERESTIMATE ITS VALUE. HOW OFTEN DO WE GET MAIL THAT MAKES US SMILE? ONCE MAYBE TWICE A YEAR. THANK YOU NOTES HELP BREAK UP THAT MONOTONY. WHO AMONG US WOULD PASS ON THE CHANCE TO BRIGHTEN SOMEONE’S DAY?

The Power of Community

I want you to close your eyes and imagine you are in a big empty white space. There is nothing in there but people. The only thing to fill the empty space you cannot fill on your own, is people…who do you choose?

In a survey conducted in Boston, recently, a group of individuals of various ages and demographics were asked ‘What is Community and Why is it important?”. So I asked myself the same questions and I would like to share with you what I discovered.

Community is what helped me through my years in silence. It is something I have grown to cherish. This past year my family has poured themselves into a new community. A community I asked them to build, that had the most magical ripple effect. The community at Inside Voice radiates joy. It fills my spirit in a way I can’t explain.

People are brought together for many reasons. I could go on forever about the people in my life and the impact that community and relationships have had on me personally. But what I think is so powerful is that everyone, everywhere is a part of some community.

In the process of thinking about the communities I am surrounded by on a daily basis I was inspired to think about the communities that feed those communities. If you choose to take a larger view you begin to understand the power of relationship.

I have watched as the relationships in my life have intertwined like yarn in a quilt. Each individual thread coming together to form a beautiful masterpiece. In my humble opinion these are the strongest communities.

Now I want you to think back to that big white room. Who shares that space with you? Is the space filled with people who push you to new heights? Is it packed to the brim with all of the people you cherish most? If you ask me, i would say all of our big white rooms overlap and intermingle to create our global community that gives us Common Unity with one another.