Category Archives: nonverbal children

Advocating for the Disabled Community

My business brand is sharing how to heal your heart with art.  I promote art because it helped me through the tough years and I felt a calling to share how I healed by creating art.

My number one passion is advocating, speaking, and sharing disability awareness either in print or in sharing my story as a motivational speaker.  This passion has been part of my life for many years.  My son Jason had spastic quadriplegic cerebral palsy.  I learned so much from this beautiful boy and realized my life changed being his mother.

I soon learned how disconnected the community was to accepting people who were different like Jason.  Wheeling Jason in a shopping mall we often were stared at or mothers would take their children’s hands and move them away from Jason as if they would catch what he had.

When Jason was first diagnosed I took him to Shriners Hospital.  I was looking for help.  They promoted helping and providing care for disabled children. Why not try?  Unfortunately, we did not receive a good reception.  I felt the coldness in the room as the doctors examined Jason without even attempting to talk to him.  They didn’t  realize he could understand verbal language, he just couldn’t express it.  We walked away from the intake knowing we would not be accepted in their program and we never did hear back from them.  They advertised their services on TV and I saw poster children were either walking on their own or with support and were able to communicate verbally.  I believe Jason did not fit their criteria as a poster child.  He was too physically disabled.

When Jason was eight years old we had to make the hardest decision in our lives, place him in a facility where he would get better medical care and 24/7 services we were unable to provide.  At home Jason was not offered SSI or Medicaid because the powers to be considered our income to be higher than their standards.  We lived on my husband’s income as a family of four.  We were living from pay check to pay check without any extra money.  We were struggling.  Jason was getting services at Easter Seals and we paid them according to an income scale.

When Jason moved away from our family and lived in a facility we chose, he received all the services he needed.  He received a monthly SSI check, Medicaid, physical therapy, occupational therapy, nursing care, doctor care and the best medical services available at Hershey Medical Center.  Everything was totally funded. I went back to work full time.  We were a normal family again… you would think.  No we were hurting, missing our son and brother.  We were not given  choices back then.  Jason did thrive at his new home and he adjusted well, for which we were very grateful.  However, we were struggling to accept Jason leaving our home. In hindsight, if we calculated all the Federal/State funds allocated to care for Jason in his new home for twenty years, in comparison to reallocating the funds to provide handicapped accessibility to live with his family, I bet it would have been less costly to provide funds for him to live with his family.

This is why I will always advocate for the rights of the disabled community.  You would think our society has improved, maybe it has, but if our president continues to mock disabled people as he did during his campaign, there is no hope for those in our society who are different.  #disabilityawareness #discrimination #motivationalspeaker

COMMUNICATION

One of the major problems we have in our world today is the way we communicate. We either communicate too much or inaccurately; directly related to television, radio, internet, newspapers and magazines. The media exaggerates a story or misinterprets a situation creating a rise in misunderstood panic amongst groups of people the story is related… Continue Reading

Cerebral Palsy Victim Abandoned

Last week our local ABC Station in Philadelphia reported a young man was found in the woods in a park located in West Philadelphia.  He was missing for five days.  He was described to be a victim of quadriplegic cerebral palsy.  He apparently was left by his mother, covered with a blanket and a bible.… Continue Reading

My Book is Available

https://www.tatepublishing.com/bookstore/book.php?w=9781634180368 I am extremely proud to present my book, Our Special Child:Jason’s Story. You can purchase it directly from the publisher’s site listed above in both book form or e-book. On March 17, 2015 the book will launch on Amazon where it will also be available as an e-book and book form. The back of… Continue Reading

Walk Out of Your Comfort Zone

I am relatively a very shy individual. Surprised?…yes I am as well. As a child I was extremely self absorbed in my insecurities, lack of self esteem and very awkward with groups. I had a very supportive home life with my parents and my sister.  There was nothing in my life back then to cause… Continue Reading

Our Special Child: Jason's Story is Available

MY BOOK IS AVAILABLE FOR THE WORLD TO READ!!!! I am feeling many mixed emotions. The number one emotion, I am freaking out. For the first time in so many years my inner most thoughts from deep down in my soul will be shared. Yes, I know this is what I have been waiting for… Continue Reading

LETTING GO IS SO VERY HARD

In 1987 when we were notified there was a bed available for Jason, I was filled with mixed emotions. I was his mother, nurse, social worker, therapist and advocate for eight years. Was I ready to give all this up? Was I capable and strong enough to let go? No I was not. At that… Continue Reading

Happy New Year

I would like to wish all my WordPress, Facebook, Twitter and LinkedIn friends and family a very happy 2015. Twenty fourteen was a very busy year finalizing my book, building my art business, making new friends and reacquainting with old friends. It was an exciting year. I watched my grandchildren prosper and enjoyed my time… Continue Reading

A Parent's Anguish Dealing with a Special Needs Child

I love to watch television and movies in my spare time. I am retired so I can manage my own time throughout the day. My television time is scheduled simultaneously at meals, late in the afternoon after a full day working in my studio, and in the early evening, after dinner and before I go… Continue Reading

Our Special Child – 9/8/79 – 12/22/06

Angel by Sarah McLachlan A child should never die before their parent. The parent should have the ultimate reward of witnessing their child’s growth to adulthood, marry the love of their life and give the gift of grandchildren. When I gave birth to my twin boys, this was my dream and I never believed it… Continue Reading