Tag Archives: self advocacy

Yes, dreams do come true…

Many of us have had conversations in our childhood about things we want to accomplish someday. For me one of those things was to write a book on my life. I think the idea came to me in middle school . This would be a conversation that I would continue to have with friends and family for many years. Then about three years I started actually writing a book on my life. Then on Sunday I finished! I self published my book after only talking about doing it for about twenty years.

“The Impossible Only Takes a Little Longer: One Woman’s Story of Determination” is now available on Create Space and on Amazon. Currently it is only available in paperback. I am working on formatting it into e-book on Kindle.

The book has stories, poems and pictures that brings the reader through challenges and success of my life. If you’re looking for a story that will inspire you or someone else in your life pick this book up. As I have been told my friends before “I’m just being little me. I never tried to be inspiring.” That was when they responded, “That’s why you are so inspiring Sheila. Keep being you!”. SheilaBookCover_30Aug2014_final

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Easter Seals-Ready, Set, Go!

Easter Seals Team Hoyt Rising Star Award is given to a person who shows determination to break down barriers facing people with disabilities. This year I had the honor to be presented with this award at the Ready, Set, Go event. The evening was wonderful. Barry Nolan was the Emcee. He had great remarks about Dick and Rick Hoyt. I only recently have learned about the Hoyt Team and was even more inspired by their story after hearing Barry. Then there was the unveiling of the Team Hoyt Portrait which was amazing. Later I was presented with the Rising Star Award. Kirk Joslin, Easter Seals, presented me with the award along with a few friends of mine. I have been a friend and mentor to the Perrino family as their son also has TARs. I was blown away by his remarks regarding my life. I have to say I was a bit teary eyed as I was given the award.

I was honored to receive this award. As I said that night I have spent my life just being me and never imagined that my life would inspire so many people. I spoke to the Ready, Set, Go audience the only way I could and that was from my heart. I told them how amazing my family and friends have always been to me and how they made difference in my life. I also told them about some of the amazing experiences that I have had working with Massachusetts Easter Seals.

My friend Remon Jourdan then read an original poem called “An Honorable Equation” which was an opening for the next award. EMC Corporation received the Team Hoyt Award because they have determination to break down barriers facing people with disabilities. As a corporation they are ensuring that people disabilities have equal opportunities to work.

The whole evening was awesome and I’m honored to have been a part of the Ready, Set, Go evening.

Dressing with a disability

At a very young age I was giving a tool that was the beginning of myself independence it was my hook my parents understood the importance of me becoming very independent and they decided they would take a broom and cut it down which ended up being about 21 inches and they took a metal hanger and they cut it down formed it into a hook and then put it into the end of the stick that is what became what I call my hook and later many of my doctors and therapists called my dressing stick it was not always easy to use my hook nor did I always want to use my hook. No one was able to truly teach me how to use my hook because their theories didn’t always work for my reality . Therefore I needed to figure it out on my own and that took time I struggled at first because I needed to figure out how to make this hook help me be able to pull up my pants. It didn’t always work when I slid into the lining of the pants I needed to roll it sometimes or not just use my hand when holding the hook with time I realized it was a combination of my hand and my chin and figuring out where just right was when trying to dress.

As much as my hook gave me independent . It also required me to rely on it and I didn’t always like that I remember when I was a kid deciding that I was going to figure out how to put my pajama pants on without my hook. I was on the floor in the back bedroom of my grandparents house and I decided that I can reach or maybe I could wiggle and  somehow this would work. It did work it took a lot of effort and I think I gave myself a pulled muscle here and there but I succeeded in being able to pull up the pajamas pants by being very flexible and wiggling. That success made me feel so good because I realized that there were times that I could do something without my hook and that mattered a lot to me. As my preteen years came and I started really not liking my Hook and it came to the point that I stopped just hiding my hook when I have to go to the restroom at school to just deciding that I didn’t need to go to the bathroom until I got home. The thing that really made me ask my parents to do something different with my hook was sleepovers I was at the age where sleepovers were important.  I used to go to the YWCA as the time and they were doing different sleepovers and now there was no way to not go to the bathroom anywhere but home and I decided that I needed a travel hook because this hook didn’t fit in my backpack at least that’s what I told my parents.

I remember the two trial hooks. The first one looks just like a ruler. It was flat and it folded up which I thought would be perfect. Unfortunately when I took it to the sleep over and tried to use it is extremely difficult and I needed to ask for some help which is really embarrassing I learned that was important to make sure that it works just right before leaving the house. The second hook was made of metal and had a spring in it. The idea was that you pushed down it to made it longer and pushed down on it to close it down. In theory it was great in practice not so good. When I went to use it I pushed down on it a bit hard and before I knew it the spring sprung out of the metal and I jumped under the bed. Back to the drawing board my dad went and the third one was prefect.

The hook I use today is a cylinder made of aluminum which is collapsible into three sizes 7, 14,or 21 inches. It fits in my purse very easily and is very light. Through the years I have grown to accept my hook as an extension of me. I’m no longer embarrassed by my hook nor do I try to hide it when I have to use the restroom in a public place. My hook has given me independence that would never have been possible without it. Now when someone sees my hook I’m open to questions and see it as an opportunity to educate another about disability.

 

Easter Seals- Youth Leadership Conference

An invitation to the Easters Seals Walkathon connected me to their Youth Leadership Conference. I had an audience of about 40 youth with physical disabilities and my topic for the day was Self Advocacy. Presenting to this group was amazing they had hope, energy, and inspiration. I was able to connect with them on many different levels. Most importantly I was able to show them through my life experiences that they could do anything that they put their minds.

Through an evaluation I asked the students what did you learn from this presentation?

“I learned to keep going regardless of what anyone says” (John 20)

“That it doesn’t matter what your disability is you can do anything you put your mind too” (Samantha 17)

“To stand up for your rights (against discrimination) no matter what” (Dominic 17)

“I will remember to fight and never let anyone walk over me” (Melissa 17)

I will remember how excited and inactive the youth were throughout the presentation. I could tell right away that I was making a difference in their lives. One student told me that they will most remember :my positive outlook, my never give up attitude and how it was contagious throughout the whole audience”. (Gabe 23)   

Interesting discussion

While having dinner with the youth I was asked how do you deal with being stared at all the time? I began in explaining that it depends on if it is a child or adult and what I might perceive their age to be. Then there is factoring how that staring makes me feel in the moment. The young child maybe 7 and younger is usually just curious and is trying to understand what is different about you. I will often will smile, wave or say hello. That is usually enough to have the child to see you as a person and they move on.  After the age of 7 the staring is usually is cruel and they are just making fun of you. The thing to remember is that they are the ones who have the issue not you. For some reason they feel that they have the right to put their issues on you and making fun of you is good. Well, it is good until you call them on it. I will walk up to people and tell to stop staring, tell them what they are doing is wrong, ask them if they would like to be stared at or just stare back. When you do these things it changes the power in the situation you gain your power and they become uncomfortable.  When I was a kid I would fun with the kids when they laughed at me and they stopped pretty quick and I use to tell adults that I was sorry they had such a small brain.