I’m happy to tell you I started a day program last Monday. I get picked up at 9:30 am and I’m home at 2:30. It feels good to get out of the house and to see new faces. I even saw Scottie, an old school buddy from years ago. He graduated a few years before me but we recognized each other immediately and I overheard him tell the person next to him how cute I was.
As I said, it’s great to be meeting new people but, I’m dying to get out of my wheelchair, while I am at the program. There is now almost no physical therapy for me. 2 months ago I left the Center for Discovery and almost daily attention to keep me in shape. Here it seems the only time I get out my chair is when I need to go to the bathroom and that’s turned into an ordeal where I’m hooked up to a lift. I guess I’ll get used to it.
My mom makes sure I get exercise when I arrive home. This past weekend we walked up and down the block which is hard for me because it’s a hill and walking downhill is very challenging for me. I want to show everyone at my day program how I get around with a gait trainer. I need more physical therapy, which will stretch me and work on my balance and transitional skills. I don’t want to lose all I’ve gained over the years because of lack of use.
My mom and dad have not given up their fight with New Jersey. Our government officials have been quite unresponsive to us. But, there are some wonderful people and organizations that we are slowly becoming aware of, that may be able to help me find a community based home that will provide me with peer socialization and a purposeful life outside of an institution. Strangely, New Jersey has not helped us connect with these organizations – the only option they offered me was institutions that would hide me away like I was living in the 1950’s.
At least now, I have a day program through DDD, and I am going to receive 35 hours a week of home health care assistance so my mom will be able to take Zack to his after-school activities, doctor appointments and get some help feeding and bathing me.
This fight is far from over, but my mom says my struggle is really a battle for all the disabled people with medical frailties living in New Jersey. She says I’m a pioneer who must fight for the right to live as an adult in my own community. I say New Jersey must stop spending our tax dollars on outdated institutions that warehouse people like me.
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