Chapter 14: School: The Nightmare Begins

Once we got home I phoned the school to let them know that Kayda would be returning to school in 2 weeks. A nurse was hired to care for her at school. She started back and I assumed that she would attend a full day just like any other child and that they had had a further month to prepare for her arrival so should be ready. Huh!!!!!! We had thought that having a nurse to care for her at school would lower their anxiety level. If anything it raised it. They were really fixated on the fact that she was a “level 3” child (required nursing care). I had tried to fight getting the nurse as she wasn’t at school when she needed a nurse, she was at home. Her health and breathing were fine now. If they weren’t she’d stay home. The school staff started constantly balking at having her there. Their only educational plan for her was for her to use a big red switch. They didn’t know why but that’s what multiply challenged kids do. They were also going to teach her to be quiet by taking her into a room by herself and letting her sniff strawberry extract each time she was quiet. After these sessions by herself it was library time and the librarian was mad because Kayda kept making noises in the library. Well, think about it; she’s blind, she’s been in a room by herself with one adult and told to be quiet and then taken into another room and is also supposed to be quiet. Her noises were her way of trying to find out what was going on around her. The nurse wasn’t working out overly well either. She was quite young; just out of nursing school. Her movements with Kayda were very jerky and fast which made Kayda tense. The nurse also didn’t like the noises Kayda made and every day I got comments about how noisy she was and how she kept “crying out”. One afternoon I had had it with this. I looked at her and said “do any of the other grade 1 children sit and not say a word all day?” “No” she said. “Then why do you expect Kayda to? Her noises are how she talks”. She had no reply to that. At the beginning of December a big meeting was called by the school. They were very angry with us. Their main concern was that Kayda was going to die and then how would the school handle that. They continued to state that her noise made more time in the classroom impossible. We later learned that Kayda spent more than 2 hours each day in a room by herself with her nurse or a teacher’s aide. That didn’t include the time taken for personal care. I don’t think anything got resolved at the meeting. The physio, vision teacher and OT all had suggestions on ways they could include Kayda but they just didn’t seem to get them. The school staff seemed to think that because she was in the same building as the other children and went to music class she was included. The day after that meeting she got sick again. It was another cold with asthma as her major problem. She was only in the hospital for a couple of days this time. She was sick over Christmas but we still went to my Grandmothers and then to another town while Dave went skiing. She checked out the local emergency room one day. I was quite happy with their treatment of her. They said she had pneumonia which I didn’t believe. Her xrays are very hard to read as her lungs are so badly scarred. Her oxygen level was ok so I agreed that I was ok to care for her at home (the motel). Once again, she got better one month and a couple of days after getting sick and did it over a 10 minute period.