I have so much stuff going on I don't even know where to start! Warning-I'm overly emotional right now!
I guess I'll begin with the bathroom! As must of you know we were suppose to be able to use Seaira's DDD funding to have our bathroom modified so that it would be easier to bathe Seaira! For those of you who don't know, Seaira weighs 72 pounds and I'm not suppose to lift over 10 due to my bad back (I have Fibermyalgia) so we're going to get a shower made so that we could "roll" her in and then she would be at the right height for me to bathe her! Anyway, it was quite a fight just to get the approval for this but we got it. We had two contractors to chose from one came way closer to the amount we were allotted and the other was twice as much. So of course we pick the lesser of the two and now we find out he has a big issue with state from a payment on a different job and it didn't go in his favor so he has chose not to do any more jobs for the state which leaves us with no one else to chose from but the one that was twice as much, well I don't have an extra $6,000 lying around for that!
Then there is the issue with school! She still does not have a one on one aide yet! It is depressing me seeing all the people who use to work with her working with these newer children. Seaira is in 5th grade and has been there the longest out of all the kids there and we can't get anyone to work with her. It just hurts my feelings so much! I feel like nobody wants to work with her. Sitting in circle time with her today I caught her looking around at everyone and then she looked me with the saddest eyes, she sees it she understands that her favorite people now have other kiddos to work with. When I left her school I cried the whole way home! Why can't she have someone who already knows her? She's stuck with an a sub right now that I can't stand, the women means well but she doesn't seem to be "all there", Seaira has medical issues and I need someone who is "all there" so that I can feel like she is safe, but again this is just a sub so if and when they find someone permanent I get to continue going to school with her to train them to, I think the school should just add me to their payroll!
Oh back to the DDD funding, since I found out we couldn't do the bathroom I was checking into "adaptive clothing" which is something on the list that her funds can be used for, so I find this web site called mini-miracles and they have things that are made for kids with feeding tubes but they are really expensive so I ask the DDD worker about that he says that I have to pay for it first and then the reimburse me for it! Well if I had that kind of money I would order them myself! I can't afford to be with out $250.00 for any period of time right now! GRRRRRRRRRRRR
Oh did I mention one of our cats shit on the floor of my van this morning!
Ya life is great!!!!!!!!!!
1 comment:
Oh man...your post just kept getting worse ans worse. My heart breaks for you. We never want oiur girls to be sad and left out.I agree with you, the school should put you on the pay roll! Woulldn't that be nice! I hope that they get someone amazing in there for her and SOON! Is there anyone who can advocate for you with the first contractor? Can it be in writing that he can be paid? You might be laughing out loud at me right now because I do not know how that works - I just hate to see her not be able to get the bathroom adapted. it sounds like you NEED it! Can you check with any local organizations like the Lions Club or Rotary? They do a lot here for kids with dissablilities. I also just had some one tell me that our local high schools both have classes that build or add on rooms to homes as part of their school ciriculum - maybe check to see if there are any schools that might to that - it is at cost for the materials is what I was told? I do not know, sorry this is so long, my heart goes out to you today....oh yeah.....stupid cat!
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