a guest post by Nonnie – In the picture above: Jess really enjoyed being Reenie’s caregiver during her chemo infusions.
Jessica’s parents have written movingly about the struggles they faced trying to balance the difficulty of separation from her with their desire to give Jessica the best opportunity for fulfilling her potential.
Jess had been enveloped in love, acceptance, and affection for all of her life. She was adored by the teachers and staff in the county school system, by her doctors and therapists, and by her large extended family. Still, she knew that there were limits when it came to behavior, and she understood when a privilege was suspended because she had not followed rules. No one expected her to be perfectly behaved, and she was completely typical in that she could be mischievous at times.
What she had not been exposed to was hostility, lack of acceptance, and isolation. And, this was occurring while she was completely removed from the love and security she had always known.
Going away to school for regular college freshman is difficult. Imagine how much more so it must be for children who can’t see their surroundings and those who are blind but also have other special needs.
I said something when we made our first preliminary trip to the school, and I said it in front of the person who would become her teacher. I will always regret it. I said, “Jessica is adored, and she is a real charmer.” I totally believe that at that very moment, that teacher made up her mind that she would not be charmed.
At six weeks into her program, we went for the IEP. Jessica was allowed to come to the meeting but was instructed not to say anything and to sit quietly. Our first impression was very positive; she sat there quietly and with good posture. We could tell that she was already learning more self-discipline. She was, indeed, having opportunities to learn in a classroom setting and to adjust to a different environment.
As her mom has written, the thrill of seeing that kind of progress didn’t last long. Soon into the meeting, the teacher began that discussion about the imaginary friend; and Jessica, who is so much brighter than the teacher knew, immediately understood. For the first time since the meeting had begun, she interjected that Christine was her real friend, and the teacher had her taken from the meeting. She left in tears because she knew things were being said about her that were not true, and she wanted to be there. There was nothing loving or respectful about her concerns and the reports that followed, but there was a permeable air of hostility that day.
Parents who entrust their children to a specialized school environment cling to the thought that their children will receive a good education and be treated with tenderness and respect. I believe that is likely what most visually impaired children without other disabilities receive at a school for the blind.
There are opportunities for a broad range of extra-curricular activities and competitive sports like swimming. There are the regular school functions like Special Olympics and proms. A highlight for Jessica while she was there was attending the prom with all the hoopla and preparation. She had a date, and she had a ball. She would not have likely had that at a regular school.
Jessica’s family members continued to try to ease the transition even when we had no idea for a while how difficult the school experience was for her. We visited her, and there was a weeklong stay there at the time for Special Olympics. When we were there, she got to go out to eat and to visit places. I remember taking her to a mall to a pet store, and she said, “They have a mall in this town?” She had no idea of anything outside the school unless we were there.
We wholeheartedly appreciate those at the school who labor to give opportunity to their students, and there were several of them who reached out with concern to Jessica. But the opportunity was lost for Jessica because the cost was too dear. She could not survive in isolation and lack of acceptance, and the damage was done. As this blog has emphasized, parents, listen to your gut feelings.
Importantly, the opportunity also was lost for the school to learn right then how to work with autistic students who didn’t fit the mold. Jessica had been a pioneer before, but whether she was able to help future students like her–or even sort of like her– is something yet to be answered. We hope.
* DISCLAIMER: This is how Jessica and our family perceived the experience and events that occurred as specifically related to Jess being at this school. It does not necessarily represent the experience of other students at that school as a whole.