Chapter 10: School; Warning of the Nightmare to Come

Just before our “delightful” trip away we had had a planning session for Kayda. It was sort of the tail end of the placement process for the associate family program. This was attended by what we came to call her “cast of thousands”. This included social workers including her legal guardian, various nurses, and staff from the school she would be attending. The changes in Kayda since she’d come to live with us were noted. Several people had noticed that if I was talking to someone Kayda would start making noises and get progressively louder until I turned and spoke to her. They also noted her explorations with her hands and mouth and that she was just so much healthier and happier than she had been. It was reported too that several of us had started the process to have her code status changed. In January the service coordinator, a nurse and I had met with the new pediatrician and he had agreed (reluctantly) to modify Kayda’s code status. CPR, stimulation medications and all other treatments short of intubation were now permitted should she go in to cardiac arrest. A note was also made of the professionals that she had seen since her arrival in our home. It included about 45 people over a 6 month period. We had, though, discovered that she did not have allergies, seizures, and that her hips were not dislocated. The other outcome of this meeting though, was the decision that she would start attending school for short periods of time after spring break. A meeting date was set up to go over her school plan at a future date. Arrangements were also made to have the nurse for the school system start preparing Kayda’s care plan. The nurse did this on one of the days when I was first ill and was actually on my way to the hospital emergency room. She kept asking questions even though I was obviously in great distress. This sort of “tact” was quite typical of this person. Around the middle of March we had our first meeting at the school. I still wasn’t well and Kayda was still recovering from her bronchitis. She quickly became gurgly in her chair and had to be lied down. A nurse was with me and was able to care for her while I spoke with the school people. The first thing I was asked was “why should we let her come to school?”. Warning bells should have gone off in my head and I should have picked her up and left, never to come back after that statement. Dumb me, I stayed and tried to answer that question; because she’s a little girl and little girls go to school, was my response. It was decided that she would attend the kindergarten class for 1 hour once a week with me with her the whole time. Not much time was it? I had mistakenly shown the school staff the info I had about Hydranencephaly back in September and that had prepared them for a “vegetable” who couldn’t possible show any awareness of other people or interaction with her surroundings. I no longer allow that information to be shared. They have to meet her first. The first time Kayda visited the kindergarten class they started singing to her. It was a song she knew and her face lit up. They stopped singing and she let out a yell. They started to sing another song and she quieted and started smiling again. Wow!!!! said everybody. They ended up singing to her much of the hour she was there. That was a good start. One day, though, closer to the end of the year I was in the principal’s office having a meeting with her about the next year. While she was out of the room for a few minutes I noticed her file on Kayda which was open on her desk. One of the things that was underlined was “severe behavior problem”. Another flag that should have sent us running away. They never did explain to me how a child who was just a “vegetable” could have a behavior problem. She got this label because she tended to be noisy. No one seemed to stop and think that maybe Kayda’s sounds and noise were her speech and means of communicating. Continuing with warnings of things to come; the nurse came to the house one day to give me something or other. She phoned before she came and I said it wasn’t a good time as Kayda appeared to have the flu and was vomiting constantly. This was just after her first visit to the kindergarten class. The nurse said she’d come anyways. By the time she’d arrived I’d moved Kayda to the living room. She was still vomiting every 3-4 minutes and I hadn’t been able to get dressed, eat, use the washroom, etc. The nurse kept talking to me as I was holding Kayda’s head as she vomited. She kept saying “are you taking her to the doctor?” “you should take her to the doctor”. Right! I’m going to pack up a constantly vomiting child and drive 45 minutes by myself to the doctor’s office. I explained to the nurse that I thought I would stay home until she’d stopped vomiting so much and then I’d see if she needed to go to the Doctor. Of course, one dose of Gravol settled her and she was fine. Throughout the spring the school nurse came to the house a number of times to work on Kayda’s care plan. She insisted on using what had been drawn up for respite staff to use when I was unavailable. The end product was nearly 20 pages long. No wonder people were afraid to care for her.