Sorry but we save these programs for other disabilities

Wednesday 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!

3 Responses to “Sorry but we save these programs for other disabilities”

  1. Missy says:

    Have you guys thought about checking at some of the colleges to see if some students (child development majors, pre med, psychology…) need some volunteer hours and would like to work with a child like Laelia? That way you could get two or so students to share back and forth so that you don’t have to be responsible to the whims of one person. I know the child development majors at my college had to study a child while caring for them in order to get their degree.

  2. Robin Clark says:

    I work for a Regional Center and asked one of the Early Intervention Service Coordinators if a child with your daughter’s condition would be given EI services. She has worked for the center for 9 years so I believe she knows what she’s talking about. She said YES. Of course, when she’s 3 and if she doesn’t have one of the 5 qualifying Regional Center conditions at that time, then services unfortunately would stop. However, your daughter should be eligible for all sorts of things through your nearest Regional Center in the EI program.

  3. Alexis Wesley says:

    We had someone from the Regional Center come over. It looks like they will do certain things for Laelie, but help with child care is out. They are coming again tomorrow so I’ll get a better idea of what they can help with. They said to call the YMCA and they gave me information on a childcare place for disabled kids, but it would cost a forture and the waiting list is crazy-long. If your friend knows anything about getting help with childcare through EI, please have her email me (recordsky@gmail.com). I’m sure EI will do other beneficial things for Laelia down the road, but right now I really just need baby sitting! :)

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