K is at respite this week. It is the one week every month where I can relax and unwind. Knowing he is well taken care of by excellent staff makes it a lot easier. Not so relaxing for hubby though.
Because of cutbacks they only have 2 staff on the night shift. They are not able to get K down in the elevator so hubby has to leave work, drive to respite, pick him up and drive him to school. Then he has to get back to work. The same thing happens after school. Hubby has to pick K up, bring him to respite and bring him up in the elevator. Not much respite when you have to deal with his behaviour twice a day. It really makes me wonder what’s going to happen when K does go to permanent care. They won’t be able to call hubby to go help every day, so they will just have to learn to deal with it.
It makes me so angry that the government insists on cutting back funding on special needs programs! Sure, integration and community living is very important, but what about those people who will never live independently? Those who depend on others 24/7? Like my K, some of them will never have jobs or be able to live on their own or even in a group home! He needs a long term facility, but there are so few of those that the waiting list is usually years! Even on a crisis list it still takes awhile. That means we have to wait for someone to move or pass away. Not a pleasant thought.
I wonder if the politicians who make these decisions have any awareness of the problems they cause for parents like us. Are none of them parents of kids with SN’s? It always comes down to the bottom dollar, doesn’t it?
Enough of that. Another good thing about when K is at respite is that B gets a lot more attention! Hubby and I try to do something special just with him. Sometimes we go to the movies, sometimes we take him out for dinner, which are both things we can’t do with K. B loves his brother, but he REALLY loves respite week!
Most importantly, K loves it at respite. It is a nice change for him too. He gets to see his friends, and there is a little girl there that says K is her boyfriend and always gets so excited when she sees him! K seems to know the way there because as we get closer to the building he gets all excited, flapping his arms and making his happy noises! It would be so easy to get him in and out of the place if there were no elevators, but all the rooms are on the second floor!
K is on the crisis list for permanent care. I hope they find him a place on the ground floor or they will have the same problems we do now.