Losing respite

K has been going to respite for almost 10 years. It is always a very welcome and needed break for the family. It gives us a chance to spend more time with B, and it’s also the only time Hubby and I can make plans for a date night. The place he goes to has all the apartments on the second floor, so they have an elevator. K has a fascination with elevators. Every time we get in one he tries to push all the buttons and will fight with whoever is in the way to get them. Before we had the wheelchair he would sit on the floor of the elevator and not move. When K “plants” himself it is almost impossible to move him. He will fight and squirm and scratch until he is back on the floor again. There have been times where he had to be dragged off. When we got a wheelchair he would still try and he would rock the chair back and forth trying to get out of it to get to the buttons. The staff there said it was a safety issue, they had trouble every day getting him on and off the bus to school and his weekly visits were cancelled. We were only given a weekend a month.
Our OT suggested we get a customized chair for K, with straps to stop him from getting out of it and safety wheels to prevent him from rocking it. We went to the supervisor and showed her the new chair and our weekly visits were reinstated with one condition. Hubby had to be there in the morning and after school to help the staff get him on and off the bus. That lasted about 2 visits then Hubby was picking him up and driving K to school and then picking him up from school and dropping him off. No staff help at all.
K was supposed to be at respite this week until Sunday. On Thursday we got a call at dinner time saying K had escaped the room and was in the elevator. Hubby had to drive down there and get him off. Later that evening we got another call. K had found a way to the stairs and was trying to get out again. Again, Hubby had to go down there. This time K fought him, which he never does, but Hubby got him back to the apartment and K went into his room.
Yesterday I got a call from the respite supervisor saying that 2 of the staff that were on with K were seeking medical attention. She said that because he has found a way to escape the premises and he is injuring staff, his respite is suspended. She told me to go through developmental services and see if they could find a more suitable place. For K’s needs he needs 1:1 supervision. The waiting list for that is years long. Even putting him on a crisis list doesn’t guarantee he will find anywhere sooner. With him being harder and harder to handle at home, the thought of having no respite at all worries me. Will I be able to cope? Will B get the attention he needs from me if I am too exhausted to do anything with him? Will I have to start asking S to watch him when he only gets one day off just so Hubby and I can go out? Hubby and I were planning on going away this summer for our 20th anniversary while K was there, but now we can’t do that either.
I am so angry but my hands are tied. The decision has been made. All I can do now is wait.



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