Tuesday, October 7, 2014

Caden

I found this article online I and thought this would be a great place to have people to read about it.

When the Barista Asked What My Son With Special Needs Has

I stopped at my usual morning iced coffee place, and as I was paying for my caffeine, the woman behind the counter asked what Caden has. She asked because I was wearing my Team Caden shirt — a shirt I wear with pride as often as possible, a shirt that has raised money for other children who are medically fragile.

I stuttered over my words. She was the first person to ever just ask me that. “What does Caden have?” There was no one word answer, no specific diagnosis. So there I was spatting off a bunch of symptoms as the line behind me began to grow. I could tell she was sorry she asked. But she did, so I felt she needed to know.

After I listed a bunch of medical terms I’m sure she didn’t understand, I thanked her for asking me. I appreciated the fact that she wanted to know what was wrong with my son. All too often people avoid the topic of Caden or just look at me with those “I feel sorry for you” eyes, or they possibly even turn away.

As I continued my drive to work, I thought about what my son might say if he could. I envisioned him relaying a message for all who had no voice, for all the children the world does not understand, for all those who are “different.”

What he would say:

Please do not feel sorry for me.

I know it’s hard not to because I can not do the things others my age can do. I can not sit up, walk, talk, run or eat, but I can feel. I can feel the breeze on my face and the warmth of the sun. I feel the love that surrounds me, the touch of my daddy’s whiskers as he kisses me, my mommy’s heartbeat as she rocks me to sleep. I hear my brother and sister’s conversations and smile when they mention my name because I know they, too, love me.

I may not be able to do the things I want to but I’m lucky because I’m so loved. I know I will always be protected and my mommy and daddy will never stop fighting for me. They take me everywhere and do their very best to give me all of life’s experiences. Because of this I’m luckier than many, so please do not feel sorry for me.

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Please do not be afraid to hold me.

I know I have many medical conditions which make my body more fragile than most but I promise I will not break. Holding me is like holding any other child. If you feel comfortable with me in your arms, I will respond positively towards you. You will feel my body move as I laugh. You will see me look up into your eyes with love. I know it may seem scary to you, but I want to be hugged; I need to be held. I want to know that you are not afraid of me. Please ask to hold me next time you see me. My mommy and daddy would appreciate it too.

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Please talk to me.

My body may be broken, but my mind is not. I understand you, and although I may not be able to respond verbally, I want to. I have so much to say to the world and the more you talk to me the more I will learn so maybe someday I will have a voice of my own.

Please don’t talk to me like I’m a baby. I know that it’s hard sometimes because I can only do the things a baby can do, but I’m a little boy, and I understand everything you’re saying. And because of that, please watch what you say in front of me. Your words can hurt me, heal me, scare me or comfort me. They can make me laugh. They can make me cry. Your words can give me strength or break me down. So please speak positively to me, encourage me and let me know you love me.

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Please let your children play with me.

I’m not contagious. You can’t catch whatever it is I have. So please allow your children to play with me. It’s hard watching other children play without me. Even my own brother and sister play around me and not with me. Although there’s very little my body allows me to do, I can play. I know it’s hard but please try to find a way to make me a part of your world. I want to be able to do all the things you can do and maybe with your encouragement, some day can. Please don’t walk away when I’m near; walk towards me; hold my hand; try to make me a part of what you are doing. You may be surprised as to what I am able to do.

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Please do not be afraid to ask questions.

My mommy and daddy are so very proud of me and always appreciate it when people ask about me. They always say they would rather you ask than walk away. I know it’s sometimes hard to come up with the right questions to ask but that’s OK. I don’t mind if you ask what’s wrong with me. My mommy and daddy know what you’re asking and it doesn’t offend them. What upsets them is when you avoid me or the topic of me. In their eyes I’m a perfect little boy with a broken body. That’s all it is. My body doesn’t work right because my brain got hurt. Otherwise I’m as typical as you or your child. Ask questions because knowledge will open your eyes to who I really am.

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Please listen to me.

I know I cannot put words together, but I do have a lot to say. I say it with my expressions, my body and my eyes. If you pay attention, you can understand what I am trying to say. I may be saying “thank you” or “I love you.” Or maybe I am letting you know I’m in pain or am scared. Just like a newborn I have different ways of telling you my needs. Please do not assume you always know what’s best for me. Try your very best to listen to what I have to say.

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Please appreciate the little things.

I know it’s hard sometimes and life can get pretty hectic, but please take the time to appreciate the little things. Appreciate your family, your friends and the world around you. Enjoy the beautiful sunrise, the sweet smells, and those perfect days. I know I do because I never know where I will be tomorrow. I’ve missed too many seasons and too many memories because I’ve been in the hospital. I’ve watched too many friends like me pass away. Life is so precious no matter who you are or how you live it. I may be limited with what I can do, but I know how very lucky I am. I’m lucky to have a family that loves me so much. I’m lucky because I was able to go to school today rather than lay in a hospital bed.

Yes… today, I am one very lucky little boy.

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Sunday, September 28, 2014

Grandma poem

 




  To GRANDMA 


a girl in a small church dressed in all black

 staring at the coffin thinking of all the hurtful 

things she said to her grandma she never

got the chance to say sorry she never thought of you she was only thinking about herself she never wanted to hurt

her grandma she then remembered all the good times when she was younger i feel ashamed of what i did to you  you 

gave me

everything i wish i could go back into time

and take back what i said i wish i could put my 

arms around you right now you taught my mom

to speak up for herself you taught her to stay strong    

you taught both of us to fight for whats 

right when halloween came you knew how to embarrass 

your children you touched our hearts you 

will always be part of me  i will never     

 give up you taught me that you told me to talk to mangers if anyone gives me problems in any store









Monday, September 1, 2014

Poem for Robin Williams


You made me

I saw your movies you made me laugh you made 
Me cry you made me smile you inspired 
Everyone to do there best you said “Thank you for believing.”
And I will never stop believing you made me laugh you made me 
Cry you made me smile we now are grieving our loss of a comedy
King you will always be in our hearts forever and forever more you made me
Laugh you made me cry you made me smile 

By lauren            RIP robin Williams

Wednesday, July 16, 2014

The real reason why I liked Starfire

The reason why  I really liked Starfire it was because I got to make great friends that I will always have no matter what.  Back in school I really didn't have friends because they are usually the ones that are using me or taking advantage me. Well if you know me like my mother, my father, and my brother then you know that I am lying I may have at least two or three friends from Sycamore. Now I realized that looking back I did realize that one of my friends did take advantage of me. it was like I saw her true colors she never meant to be my friend. But when I went to Starfire  I got the second chance to make new friends. That's why I came up with this catchphrase  see the ability NOT the disability.

Thursday, January 16, 2014

Podcast

 This here is about my podcast and you can even listen to it as well.    In My World - Writing in Community

Annette Januzzi Wick hosts this special episode of The Podcast Edition, welcoming her Writing in Community class to the microphone.Starfire_Podcast_-_Low_Res

Participants in this class are fromStarfire U, an organization which connects young adults with developmental disabilities to others sharing similar interests, as well as writers from the greater community who have offered of themselves and their words.

Courtney Kerby, Starfire advisor, begins the discussion on what it means to be connected in our community today. Guests take listeners on a journey through seeking one’s parents, becoming an author of children’s poetry, breaking the surface with fictional characters, and descriptions of a child who wants to be free.  

Along the way, members share stories of opening up, being in places they shouldn’t be, school-related musings, and recognizing kindness.  Each guest offers their insights on creating with like-minded writers, and how participants equally invest in the writing and each other. 

Photo: l-r: Lauren Froh, Ellen Austin-Li, Carol Workman, Eva Lewandowski, Nicole Johnson, Caitlyn Rettenmaier, Courtney Calhoun, Michelle Dunford, Annette Januzzi Wick.


The order of readers is listed below, as well as the writer’s blog:
 

Lauren Froh - Lauren Froh Blogspot

Courtney Kerby

Nicole Johnson - Nicole's Kids Poetry

Eva Lewandowski - Core Coaching

Michelle Dunford - Harry Potter Stories

Caitlyn Rettenmaier - Global Scissors

Carole Workman - Learning My Life 2012

Ellen Austin-Li - In the Garden of My Dreams

Not appearing, but also in class:

Jackiedra Wilson - Have Less Spend Less

Since 1993, Starfire has been offering innovative programs that address the emerging needs of teens and adults with developmental disabilities. The organization is committed to reducing the isolation of these individuals through development of social and community skills as well as peer integration.