Have a voice!

 

When I started A Place 2B ME, Jonathan encouraged me to have stories on the webpage. This would be an opportunity for individuals to share their voice.  Have people get to know about them through a sharing platform.   My son Jonathan is a “storyteller” so I was so glad when he wrote the first one.  Then Lucas was asked and I was so appreciative that he would do this for me.   I had asked Thomas, and after asking several times (haha) I appreciated him completing this “task”.    Of course, I had asked him to expand on his story, wanting to know more about how he felt about his "limitations".  Well last week Thomas was taken to heaven at the early age of 22.  I was planning on having a long time with Thomas as A Place 2B ME was created to help the "Thomas’s" of the world. I SO enjoying when we had a chance to spend time together.  It might have been quiet, but I felt a great sense of comradery through the process of sharing and planning for fun stuff for the future.  I accepted him for who he was and in turn he accepted me! We had shared many thoughts and dreams, as well as helping Thomas problem solve and allowing him to express his feelings and thoughts.

What we found out after his passing, that MANY folks had wonderful things to say about Thomas even though we didn't know he had so many “friends”.  What I mean is that what many people saw was that Thomas wasn’t invited out, had friends who came over, and didn’t go out to the social scenes with peers his age. Thomas had a wealth of online friends his age. What we found out was that he found acquaintances and friends through his social outlets such as Facebook.  This gave him the most wonderful opportunity to share his thoughts, ideas, hopes, dreams, and aspirations with others.  He got to debate politics, sports and life in his own way and in his own time.

As I was discussing just today with fellow therapy colleagues, we so want to find a way to let others have a voice to say "wait a minute, give me time to think, I don't know right now.  WE are able or are given that opportunity most often, but our friends with "special needs" do not seem to be given the time to process information.  We seem to want them to respond immediately.  Well, we sure often see the "behavior" that occurs when the difficulty of expressing, OR when we don't allow or accept what they have shared. I get such a feeling of satisfaction and warmth when the process is provided and you see the smile or simple gesture of THANKS when we affirm their thoughts and feelings. 

Often, Thomas would just be silent or respond “I don’t know” when in fact he DID know, we just weren’t providing a comfortable platform for him to express himself.  His phone, computer was his connection to the world around him. 

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This is what Thomas wrote...............................................

~I was born with a congenital heart defect, and needed an aortic valve replacement. This has led me to have learning and attention difficulties throughout my school years. Even though I had learning troubles, I did have fairly easy time making friends. The socializing is kind of built in when you are at school, but I very rarely hung out with friends from school except for organized functions. After school, I am still stuck in the same rut I was in while I was in school with having acquaintances and quasi‐friends at work. I also had trouble finding hobbies to pick up outside of the house. That’s when my Aunt Pam stepped in to help.

Pam is my Aunt, and is willing and able to help those who she can. She tried to help me find different leisure activities to take up some of my free time. I think if my schoolwork and job hadn’t gotten in the way so much it would have worked better. She did get me to join my community band for a few months before my college classes started up. She also got me to walk and hang out with one her students at a nearby mall. If I had more time and focused a little bit more of my time into trying what she had in mind, things would have worked much better. Maybe we can try again sometime, I think with the services she has planned for A Place 2B ME will help me and others who are struggling to find friends and different hobbies to fill our days with. 

When Aunt Pam first brought up the idea of her A Place 2B ME, I thought that a lot of people with special needs could benefit from a place like that. I think that the social events she has planned like the “First Friday Fun Night” events will help those who have trouble making friends. Events like that along with whatever else she has planned for her company will be a benefit for everyone who is in need of her services. A Place 2B ME will be a great starting point for those with special needs who are looking to join the everyday world.  ~

My friend Carli posted this on Facebook and with her permission I am including this in my blog post - I refuse to accept your labels. Do not impose your labels based on your assumptions of who I am. You do not know my struggles, nor do you know my joys. To look upon my exterior is not to know me. You chose to ignore my potential for growth. Rather than speak your wisdom, you chose to tear me down. Instead of conversations, we fight. You hate rather than educate. Based on your labels.

For years, our society has been breeding a culture of hate. We have turned our backs on our neighbors, chosen to allow the media to control our opinions and insist our way is the only way. We can continue on this path, or we can choose a new path. I chose to stop generalizing, to love, to share my opinions kindly and safely. I choose to teach my children to accept everyone and to speak out of love first. I chose to educate others. I chose to listen first and speak second. I choose to keep learning with an open mind. This is the path I choose.

 

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I again am thinking about Thomas......thinking about what he and Carli said.  Reflecting on this young man Thomas' life and his legacy.  Thomas very much chose to educate others and was a very kind soul with those of ALL needs, shapes, sizes or race. He was one that we would consider to have hidden disabilities. To look at Thomas you saw a tall young man without any glaring disabilities. But on the inside, was this heart that was not formed correctly and needed help soon after birth and continued monitoring as he grew and developed. He would struggle with some simple everyday tasks – riding a bike or driving a car was not a skill accomplished.   He was that person who listened first (most of the time), had an open mind, and saw the potential in others.

At his funeral, my sister Kathie encouraged his peers to keep Thomas’s story going strong.  Be his voice. Keep living the life that Thomas would be proud of you for!  That way we can help cultivate a culture of acceptance and not turn our back on others.  Be a helper…be patient and be kind. Lend a helping hand….but, WAIT – give time for those with or without a voice to collect their thoughts and ideas and be allowed to express themselves using many different platforms.  Let’s advocate, help and guide others in doing just that!