Tuesday, October 5, 2010

Tuesday's Question ...... I dare you to respond!

Are you a leader, a follower, or an observer?

I would have to say I am a little bit of all three.  I think we have to be to truly learn.  However, I think most of my life I have been an observer.
I have never been completely comfortable in my own skin.  I have always been searching for other peoples acceptance.  I never wanted to disappoint anyone, so I adopted the idea if I don't try I can't fail.  If I tried and I wasn't sure of the outcome I would quit.  My fear of what other people thought of me controlled me for years.  At 35 I am trying to break that cycle for myself.  That is one of the reasons I have started this blog.  I want to find myself, my true self.  I am also hoping that while on this journey I can help others find themselves, also.
I've always been outspoken. I can defend myself.  I would never follow someone when I didn't agree with what they were doing. My problem was I was scared to ask questions.  I didn't want to offend someone or look stupid.  I think  many people that know me would say that I am a leader.  What they didn't see was my embarrassment.  They didn't see how inadequate I felt.  They didn't know that I would laugh at their innocent jokes(about me), but would cry inside because that is how I really felt about myself, and by them making jokes in my mind it confirmed that they felt that way about me too.  I think it is because I am outspoken that some feel that I am a leader.  I have many ideas, but no follow through.  If I fail I will prove that I really don't have anything together. Since having my son I have had parents come to me and tell me what an inspiration I am to them.  I always have a smile on my face.  They tell me they wish they were so positive.  These comments make me laugh, because I feel completely lost. I feel like I fail as a parent everyday. Not in the way you might be thinking.  My son is well taken care of and very much loved.  I feel like I don't do enough for him.  I feel like I don't know the system well enough to get more services, a better education, and so on. Now, I don't want to make this a pity me post. I recognize that you have to point out your problem areas to be able to overcome them.  And for me and my son I will overcome them.
Now back to the main question.  Are you a leader, a follower, or an observer?
I don't believe one of these positions is better than the others.  I feel that you have to be content with yourself.  It is only when you are not happy with yourself that you need to make a change.  Be proud of which ever posistion you are and own it.  Now can you be so honest?

Help a Princess live her Fairytale.

This is Shelby and her brother Jaxsen.  Shelby has a wish.  Please click on the link below to help this beautiful little girl's dream come true.  Help Shelby be a princess in the most magical place on earth.  Her mom Erin has written a brief story about Shelby and all they have been through.  Thank you for your compassion.

Monday, October 4, 2010

Question for Monday???????

If you had to describe yourself in one word what would it be and why?

I think passionate describes me best.  I put my entire heart and sole into the things I believe in.  Family, friends, charities, etc.  I go full speed ahead when someone or something I care about needs me.

Sunday, October 3, 2010

A Celebration of Children with 1p36 deletion Syndrome.

1p36 DSA Awareness Campaign - PEPSI - You can help to make a differene in these children's lives.

Pepsi is giving 1p36 deletion syndrome another chance to win a $50,000 grant.  I have posted these 3 videos so you can see some of the children and young adults that you will be helping. Please go to http://www.refresheverything.com/search/?q=1p36  and vote.  Vote everyday. The first video is my son. 
We have struggled Josh's entire life to find the proper help for him.  We have lived in 4 different states.  Every move has been for Josh.   Recently Josh and I moved to North Carolina.  Once we got here I quickly discovered that the resources that were here during my search were no longer available due to budget cuts.  Josh has been denied to programs based on his disability.  The doctors, therapists, and teachers don't know what 1p36 deletion syndrome is, so they don't know what to do for him.  My suggestion is to educate yourself so when these children come into your programs you can help them.
I will say it has not all been bad.  We lived in South Florida, and Pediatric Therapy Associates in Plantation, FL was an extraordinary therapy center.  They went above and beyond the call of duty.  Josh also attended a non profit school in Coral Springs, FL called Abi's Place.  We were fortunate that year to receive a full scholarship for him.  While attending Abi's Place I saw so many wonderful changes in Josh.  The staff at the school made the parents feel like family.  It was a great experience.  You may wonder why we moved?  Well, I simply couldn't afford to live in South Florida.  As a single mom I didn't know how I would pay the bills.  Josh lost his scholarship due to lack of funding.  I chose NC because I believed that everything we needed was here, and the cost of living is lower here.
Joshua has seen 6 different physical therapists here. One therapist dropped him on his head.  He had to get a CAT scan.  One decided to wrap a rope around his torso, and pulled him off the ground with the rope causing injury. And 3 simply did not want to work with him.  He is starting with the 6th therapist tomorrow.  I am praying that she will work out.  His school has segregated their special needs students.  While at the open house I discovered that they were teaching my son at the same level as his 8 and 9 year old peers.  This is like teaching calculus to a first grader.  Josh simply is not capable of understanding about Canada and Mexico, yet.(if ever)
These are just some of our experiences.  The 1p36 community needs your help.  All you have to do is vote.  Thank you so much.