School lunches aren't cheap. It adds up and quick, and maybe more then half the time Hailey won't eat it all. When you apply for a free or reduced lunch they just ask for your income and how many family members live at the house. They don't ask how much you are spending every month on treatments and medications that aren't covered by insurance, or how much you pay in hotel rooms and gas to take your child to Utah for a simple Dr. appointment that you can't obtain in the state you live in. No medical information at all. Kind of unfair. I spoke to the principal about this issue and we are working together to see what can be done about that.
The previous school Hailey attended had the WORST "customer service" front desk staff ever!! You could walk in and no one would acknowledge you. I never met or even seen the principal there once. The principal had went on medical leave right at the beginning of the year, then had maternity leave and then Hailey had surgery and then the school year was over. She never met or even knew anything about Hailey (That I was made aware of). I don't think she cared. I don't think a large majority of the staff cared even if they did know. The school nurse was incredible and I built a relationship with her. The assistant principal knew of Hailey because she was in on every single IEP we had, but she never offered help to us or asked us if we ever needed anything. There was one time when Josh called the school because of a bus ADA issue and they were quick to help then. I was scared thinking, this is how it is at all schools. When Hailey changed schools for summer it was kind of the same thing. I felt like people were just there to do their job and go. I knew with Hailey being at school all day I was going to be very involved and I wanted to again build a relationship. I wanted everyone to KNOW me and know Hailey.
I had asked about who Hailey's aide was going to be and had discovered that Hailey wouldn't get a 1:1 aide. That she would get floaters of whoever was available. I didn't like this. I didn't want to train one person how to care for Hailey and then come back to do it all over again when another floater came along. I thought the mess of last year and fighting to get Hailey an aide was behind me. Last year I had to attend school as Hailey's aid and collect data with a click counter and then after weeks and weeks they said that Hailey would have an aide, and we loved that aide, and she cared for Hailey and she went to summer school with us. Imagine how shocked I was when the Instructional Coordinator tells me that Hailey was never assigned a 1 on 1 aide. I can picture myself scrunching my eyebrows and shaking my head, "ah what?"It honestly doesn't make sense to me. I have a child who has special needs, who is medically fragile, in a wheelchair, uses diapers, has orthotics and would need help to wipe her nose, hold a pencil, transistion from a wheelchair to a regular chair and would need to be supervised while in a chair. Hailey needs to have someone there in case she unbuckles her seatbelt on her wheelchair and trys to get out. She needs someone to help her while at lunch to help get her food, feed her, wipe her mouth, and monitor how much she eats. Hailey needs assistance if she's on the floor playing and other kids are acting out and push her over or step on her or take something away from her because she can't defend herself. How can this Instructional Coordinator deny Hailey a 1:1 at school? I was told Hailey would have constant supervision at all times the only difference between that and a 1:1 aid is that the 1:1 is always the same person. One thing about Hailey's diease it that nothing is consistent. You don't know what one day brings that won't be there or will be worse the next. Hailey needs to build trust with people who are consistently in her life. I don't mind her meeting new people but I want someone who is pretty much taking my place while Hailey is at school. They need to know her so well that they can tell when something isn't right. Again, how does this not make sense to anyone but me? Am I nuts?
After Hailey's surgery, when it became time to discuss Hailey going back to school you read about all these laws that are in place for a disabled child to be able to attend school. With those laws in place we are still fighting. I have read about Least Restrictive Environment and my sister reminded me of this recently as she has dealt with similar issues. Here is the definition of LRE taken from Wikipedia: