Sorry but we save these programs for other disabilities
Friday, November 16th, 2007Wednesday Laelie was really fussy so I took her for a drive. It is so nice to get out of the house, but so hard to actually leave. We drove past Children’s hospital and all the way to DawnSignPress. So I stopped by DSP to introduce the baby. She slept the whole time! Some people were joking about me just bringing baby to work with me and doing my job with her in my lap, but I don’t think they understand that whoever that cute, sleeping baby in my arms was, it wasn’t mine. 
My baby is a fussbudget!
Then yesterday (Thursday) I went out to lunch with DSP folks for a customer service appreciation thing. It was weird to be without Laelie and also nice. I could forget about being a mom to a demanding little girl for a few hours. It was so nice to see my friends again. It’s also nice to be able to say that I work with my friends.
I am really hoping to return to work in January. It would mean a lot to me. I know it depends on quite a few things out of my control. For one thing, I would need to make sure Laelie had the care she would need everyday. Charley and I have moved our schedules around so that Lays would only need four hours of care a day: 9:45am-1:45pm Monday through Friday. I need someone who can do her physical therapy (the gentle version) at least two times during those four hours. I also need someone who can manage a baby with casts (although hopefully her arm casts will be off by January). It would also be nice for that person to come to our home instead of having to drive Laelie somewhere. We’re also trying to find someone who will take around $150 a week.
Charley doesn’t like the idea of only having one person come over since if that person gets sick or needs a vacation, then we’re out of luck. Plus there’s the risk of someone having no accountability and taking off or someone having our key and letting people in. And then there’s the possibility that this person may find another job or need to quit and then we’re stuck.
The alternative is to send Laelia to daycare with other kids where we cannot guarantee she is getting PT, or individual attention, but at least they would feed and change her and also there would be accountability.
I remember when I needed watched when mom was still at work, we would just go to grandma’s. Oh how I wish my mom was alive and living down the street. I hate that we live so far away from family.
I thought the government would help with this. I thought that because I used to do that. I went into the child’s home (he had down’s syndrome) and the mom trained me in what to do. The government paid me, so I wasn’t a burden on the family. I couldn’t work more than 20 hours a week if I remember right and that’s all Laelie needs. Really that was the best job ever since I loved that kid! He called me “Nec’as”. I remember his bus driver grinning at me saying, “I don’t know any one named ‘Alexis’,” as Benny (the boy I took care of) was yelling, “Nec’as!!!” from his car seat. Anyway, I knew that it was possible to get help, but I’m finding even though she is severely disabled, I can’t get any. She is twenty times more difficult than Benny ever was. Really with Benny I just had to trick him into eating his medicine-laced yogurt before it turned to goo and discourage his alter ego: Naked Boy!
Well we spoke to some members of Early Start and it doesn’t sound like we can get government help. They suggested the YMCA but anything we did would be out of our pocket. Good luck finding someone who will do specific PT for our special child during day care. If our child had one of these other disabilities then they could do something for us. Well her’s is rare and doesn’t effect the brain (directly) so too bad. I’m open for options but don’t know where to start. So far Google hasn’t been much help.
I just pray it will all work out; that Laelie will sleep at night; that Laelie will allow feedings three hours apart; that we can find help or the right daycare; that I will know when to return to work; that Laelie will hit milestones like potty-training and feeding herself so childcare will not be so hard to find in the future; that I will get some sleep and that I’m doing the right things for my daughter. 
I’m too cute for day care!
