Our story is going to start somewhere in the middle.
This is briefly our story as to how we got to this point: Every year, it was the same thing. September meant a new teacher. At parent’s night, the teacher would look at us like a deer in headlights. She’d have a glazed look in her eyes when we shared stories of how clever our daughter was. We warned her about being manipulated and asked that she not help her too much. I think teachers felt we had unrealistic expectations for a child that had seizures, was highly distractible and had poor fine & gross motor skills. Pretty much, everything was difficult for her. They saw the package, but they didn’t understand the child.
School used what I call a drill system (for lack of remembering the correct terminology). If the child is requested to repeat something like sorting colors, they have to do it correctly 10x before they can move on. Well, Jess did it correct the first two and then shut down. The teacher would then say she didn’t understand. Jess would do these things on her own, but would not perform for anyone. My gut told me it was too simple, but at the same time, I knew a seizure would disrupt her train of thought. Unfortunately, if she didn’t have a foundation, we had nothing to build from.
So here we are 10 years later. School focused on living skills. They also told me to “not even bother” previewing programs till Jess was 20-21 because “you can look at a program and it might be appropriate now, but it might not be appropriate when it is time to transition”.
Well, since she had spent the last four years working on living skills, we naively thought that this meant she would be able to transition to something more than a day program. We did not want her going out into the world for the first time at the age of 40, or when we are no longer physically able to assist her, whichever came first. Besides, she needs her own life.
So when she was 20, we did look at a Camp Hill community. We thought this would be a possible placement. It was everything we thought we wanted. There were many jobs on this working farm. You could work with animals, be in a kitchen, work in an art studio and more. Seemed ideal. We went for our interview and they said: “Jess seemed like she would make a fine addition”. Jess went for her month trial and failed miserably. She does not know how to work. She does not want to work. In fact, she does not want to be told what to do! We had no clue as to where we could go from here. What we did know for sure, was she knew how to work the system. All I can say is that it got much worse before it got better.
We didn’t know it at the time, but this rejection was what lead us to the next door.