17 weeks.
And I wonder why I've been so exhausted.
Right about that time, I got a letter that the regional centers weren't going to be letting parent vendors handle their own respite hours anymore and that any respite workers would have to go to an agency...and couldn't handle any g tube or ng tube issues. So basically, I lost all of my respite hours at the same time that she stopped going to school.
Besides every other weekend that she goes to her dads and the week that she spent there at Christmas, she has been with me 24 hours per day. 24 hours. It is wearing on me...on us both.
I love this girl more than my heart can bear at times. She is so amazing and has come so far. I quite literally can not imagine my life without my little lady. This girl who we were told wouldn't walk, or learn...who we were told we should put into a special home...who now runs most places and who is smarter than most of the therapists who work with her and can manipulate the world in such a unique way...She makes loving her so easy.
But how many of you with ten year olds yourselves can say that you would be able to spend 24 hours with them for 17 weeks?...She needs to go back to school!!!
I've been fighting for a different placement coupled with a one to one aide with her to monitor her so that she won't try to sneak food while no one is looking...And I do mean fighting. Tomorrow, she gets her chance. They are going to let her come for a trial day at a school in our town. I think that she will really fit there. They are thinking that because of her special supervision needs that she wouldn't be a great fit but I disagree. They don't know her and I do. I am really really hoping that she can do well at this school.
So if you are reading this, please keep us in your thoughts tomorrow. She needs friends and she needs school and she needs to learn.
Wow. Just...knoew that I am in awe of your stamina. I don't know any parent, whether their child is typical or has special needs, who could stand to be with their children 24/7 without a break at all.
ReplyDeleteI really hope this new school works for Hailey. I hope that for both you and her.
I'm a little late - hope it went well. It doesn't seem legal that the school could just leave you on your own like that, unless you request it. Even the sickest kids in our school district get a nurse to accompany them to school, or get some homebound instruction and therapy. Of course, that doesn't help with the social part. Good wishes.
ReplyDeleteUnfortunately, the visit was cancelled because the administrator who was going to be doing the observation (or judging in my mind) became ill. There has been nothing rescheduled right now. Hailey does have a home hospital teacher who comes to school for 1 hour per day but she only started last week. I do get to be alone for one hour per day now! I am really really hoping that we will have a rescheduled visit date for next week so...to be continued :-)
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