Kids Crusaders Corner – How my wish to become a full time caregiver was fulfilled

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As we bring 2015 to a close, we have so much to look back on and so much to be grateful for. I know we personally have so many fun memories to reflect upon. Taking Nick to make this amazing painting for Adam’s birthday (One of Nick’s runners from www.whoirun4.com) captured the year on canvas! “I made a wish and you came true.”

There are so many barriers still within our everyday lives of living with a disability. It is a constant learning experience and it is always a constant teaching experience from which others can learn from. With every passing day, great gains are being met with the help of people willing to be the voices for those who can’t speak. It is a forward momentum that keeps pushing ahead and breaking ground.

For my family personally, the greatest change that came about this past year was the signing of a law in New York State that will allow parents of adult “children” with disabilities living at home the opportunity to be paid to be their caregivers. (See here).

My son will be 25 in April. As he ages, obviously so do I. As he has aged, the amount of time it takes to give him direct personal care has increased. For the past 21 years I have worked opposite shifts from my husband to always have one of us available to provide for our son’s care. I have worked the overnight shift while my husband works the day shift. We pass in the driveway with a quick good morning and a “Nick informational report off”.

I often go many hours without sleep because after working all night outside the home, there is so much that still needs to be done inside the home, including caring for my son. As of April 1, 2016 I will be able to step down from my “career” as a nurse and step into my role as a Mom…which is how it should have been all along. I won’t have to look back with regret that my time was spent punching a time clock when it should have been spent treasuring every moment I have with my son. Being able to be paid to be at home taking care of him will alleviate the financial concerns the loom over so many families when they get forced to decide between working and caregiving, or in my case, often juggling both at the expense of my own physical and emotional well being.

I would like to extend my deepest gratitude to a truly dedicated parent, Doris Behan, who, for 5 years was a strong presence and constant voice in helping to get this law passed. Her unwavering dedication along with Assembly Majority Leader, Joseph Morelle’s hard work helped to make this dream become a reality.

2016 is looking to be a promising year. Thank you to every individual that has ever taken a stand to protect and enhance the lives of those living with a disability. Your voices were heard.

Happy Holidays from our family to yours!

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