There are no pictures with this Blog just something that was so moving I want to share it. As most of my friends know I'm a learning consultant working as an out of district case manager. Many of my kids are medically fragile, autistic or exhibit behavior problems that cannot be handled within their own home schools. I've written about some of my adventures before but this one takes the cake.
My little guy, whom I'll refer to as Eddy (obviously not his real name) is six years old. Eddy is severely deformed without arms or legs, a bulging eye and a cleft palate. When he was born his mother was told he might live a year. So much for that. Eddy does however have very small extensions from his shoulder areas with some fingers. He is the size of infant and considered legally blind and non-verbal. When I say non-verbal it simply means it is difficult to understand his vocal sounds. Eddy loves "Dora the Explorer" and will say her name and a few other words.
Eddy had never been in an educational placement because his mother was afraid to let him go. However when Eddy turned five it was time to find an educational placement for him. His mother was still extremely hesitant in allowing or trying to let go of him. With a lot of tender loving care Eddy's previous case manager worked with his mother and finally called me for some suggestions. At that time I had not met Eddy but was very aware of him. We all met for the first time at a school I thought would be perfect for him.
I met the other case manager, Eddy's mother and Eddy at the school. Initially I was shocked by what I saw but able to maintain my professional composure. The school administrator was just as shocked but not so professional. Eddy and his mother took the tour of the facility visiting the first grade class first. It was during morning exercises in which music about the days of the week played in the background.
Eddy traveled in a baby stroller which was parked next to his mother whom by this time was sitting in a chair. All of a sudden Eddy began rocking back and forth. His mother knew that meant he wanted to be out of the stroller. She sat him on her lap and he began to bounce and rock with the music. We then moved on to the pre-school class where again music relating to months played. Eddy was in heaven enjoying what he heard.
After the visitation we met in the conference room with all the therapists and the administrator. Eddy's mother demonstrated his ability to eat very finely chopped food while discussing with the therapists his medical conditions, which weren't all that significant considering his visual appearance. The therapists fell in love with him immediately. That young man made it clear with his body and head movements that he knew we were talking about him. I was impressed because he presented with eye contact towards the speaker. Ideas were flying all over the room as to how they were going to enhance his communication, mobilization and education. We thought we had it made - not.
In short I believe Eddy's deformities impacted heavily on the administrators and prevented his enrollment. I was rather upset with them but not put off. Another private Catholic school nearby also catered to the profoundly disabled population. I gave them a call, we toured and Eddy was accepted on the spot. It was the last day I worked before summer break. Eddy was going to begin his educational career during the summer. I was a nervous wreck now because no one would be around to monitor his transportation or transition into the new program.
Upon returning to work in September I made it a point to visit Eddy first. His classroom teacher greeted me enthusiastically and told me all about his summer transition. It went very well and without any problems. A sigh of relief.
It just so happened that I arrived at his classroom during his PT therapy. Well, he put on quite a show for me. His therapist had designed foam extension representing his arm that was Velcro around his small hand near his shoulder. Eddy moved his arm to activate a switch connected to a pig. The pig snorted and walked when the switch was activated. It was difficult for him but he did it. The therapist then placed Eddy on his stomach in what looked like a neck pillow. She moved another switch within reach of his tiny fingers and prompted him to activate the switch. It only took one prompt.
I've been back to see Eddy a couple of times since. The second time I visited Eddy was sitting in a half circle with his classmates discussing the fall foliage. His teacher was asking each student about their favorite color of leaves. I have to interrupt myself here to note that Eddy's teacher and classroom aide informed me that when he doesn't want to do work he'll sing "This Old Man" or "Bingo".
I sat next to Eddy talking to him quietly. So that we would be ready for his teacher, I began asking him what was his favorite color. As I named the various colors, Eddy nodded "no". I finally named brown and received a "yes" answer. Keep in mind I didn't have any color cards to show him as I rattled off the colors. It was intended as just a social fun thing. His teacher finally reached him and showed him a yellow leaf and a brown leaf. He was to acknowledge his favorite through head nodding. Oh yeah! He picked the brown leaf. Hmmm.... I stayed to watch what else this little guy could do.
Due to Eddy's quick development using switches, his teacher and therapists asked if the district would purchase such educational toys for him to use both at school and home. He has nothing at home. I explained that I worked with an exceptionally good director of special education. If they could provide an educational rational she would more than likely approve it. They did, she did and the educational products came last week. I couldn't wait to deliver them.
I took them up last Wednesday; timing it so his PT therapist would be there. Eddy was sitting in his chair when I came in the classroom. I immediately went over to see him and say hello. I believe he recognized my voice, at least I'd like to think that. Since I was playing Santa Claus we moved Eddy over to a table and started unpacking his switches and products. Wouldn't you know they needed batteries. Since everyone was so excited about seeing Eddy work they found batteries.
The box was full of really neat things. There were at least four different types of switches and a variety of animals. We hooked everything up and the PT therapist started working with Eddy. He was down right entertaining. We were able to determine which switches should go home and those that should stay in school. Eddy even selected which animal he liked the most - the kitten that was supposed to meow but barks.
I took pictures and video. We played, oh, I mean we worked, for more than an hour. During that time we were trying to come up with how we were going to explain to Eddy's mother, who only understands Spanish, how to work with him. It was really an easy problem to solve. The school has a translator and I have the means to develop a DVD. So next week we are scheduled to make a DVD for me to deliver with those educational products that are going home.
Our next educational project is to have Eddy work on the computer utilizing switches to activate programs. I can't wait to see that.
I know I've told a nice story but now for the most moving part to me. Eddy's teachers and therapists hold him and move him about without any hesitation. As we were wrapping up Eddy had been sitting on his aide's lap. She suddenly stood up and handed Eddy to me. I took him with my hands under his small armpits and brought him to my lap. That was the first time I had held Eddy.
I announced that to everyone's surprise and mentioned that he might be somewhat startled as I certainly was. Do you know what that sweet little guy did? He rubbed the back of my hand with his tiny little fingers saying he was fine. I held him for a while as everyone else cleaned up our mess.
I can still feel his soft caresses when I think of how he made me feel comfortable with him. What a guy!