The Life of a Volunteer

After leaving Adult daycare, I started volunteering at the “special education” department at the local B.O.C.E.S. It was here that I found my calling and what would be a turning point in my life. I was hired as a general aide in the special education sector with what the sector called the most severe students (thank God they changed that; I hated it). This meant I wasn’t assigned to anyone in particular; I went where I was needed. I had two young men (we will call them Matt and Jim, not their real names) who were my “regulars”. Matt had cerebral palsy, and Jim had Williams syndrome.

On my 1st day, I was told that Jim had to go to the pool for exercise. On the way down the hall, he began to seize. I knew what I had to do, being someone who had epilepsy. So I placed him on his side, timed it, and called for assistance. I was unaware that the lead teacher was following me to see how I would be able to handle the situation, as this happened regularly. She said, “I’m impressed with how you knew what to do. But I don’t understand why you are crying.” It was then that I shared I knew what that feeling all too well. I also shared that this was the 1st time I actually saw what one looked like, as I’m the one who usually has them. Jim couldn’t speak, but he made sounds which I learned quickly; tongue sticking out, he was not happy. Then he made this little sound that sounded so uplifting, almost like a laugh; it meant he was good. One thing we had to do for Jim was place his arms away from his face. He had to stretch them, and he hated it. You would often hear his bones crack when you moved his arms. It was quite disturbing to hear, and I felt it was probably painful, as I saw his tongue every time I had to do it. Jim touched my heart. When I read him books, he would smile and make his happy sound. His favorite book that he would wiggle for was Green Eggs and Ham. We read that so much that I had it memorized at one point. Sadly, Jim’s seizures increased, and he now needed a 1-on-1, and I wasn’t that.

Matt had celeral Palsy. He too was not able to speak but communicated with yells, groans, and smiles. Unlike Jim, he wasn’t able to walk, so he had to use a wheelchair. But he still needed to strengthen his legs, and so we had to put him in a walker. Everyone struggled to get him to walk, but I discovered the secret to him walking: GOLD FISH CRACKERS! So I would take 5 steps forward, call his name, and shake the gold fish box; he then would push himself to me. By the end of the school year, he could walk to the cafeteria and back. This was the furthest he could walk.

I volunteered here for 5 years, thinking if the school saw me, they would hire me based on my experience and devotion. My job coach came on board after I graduated. She let me stay volunteering while I tried a new “program” that they were using. (I don’t know if they still do this; I hope not) But they knew I wanted to be a wedding fashion designer and one day open my own store. So she set up for me to do 2 weeks volunteering at a bridal shop. I loved it! I got to help do her window, which had some strict rules. Rules: you had to have a wedding dress, with bridesmaids and a suit, and also a prom dress. You can’t put the same style or color in the window, so if I used butter color dresses, I had to use blue next time, and the prom dress had to be a separate color from the bridesmaids’ as well as style, but somehow the dresses had to not clash. This sounds easy, but it wasn’t. I also got to help measure the bride’s and hang back up the dresses after they tried them on. I loved it, and for 2 weeks I was living my dream. I remember thinking they finally understood me.

The next 2 weeks, the job coach had to show me a job they felt was fitting for me. She placed me in Hannaford (grocery store) bagging people’s groceries and said I feel like this is more fitting for you. I remembered my high school teacher saying that I would end up doing this very thing, so I told my job coach that I would continue to volunteer at the school. She was annoyed ( as was I) and said: “You’re my first case ever, and now you made me look bad.” I didn’t respond. I wasn’t the advocate that I am now cause i would have responded.

Come back next week for the next part …