The first day, even week, at school was super exciting for Hailey and super stressfull for me. School was starting on a Monday and teachers weren't at school until the Wednesday before and I know they had things to do and get in order and were going to be busy. I left a message for Hailey's teacher and was able to set up a time to go and meet the teacher. My nerves were all tangled up. It was going to be a new teacher, a new school, new nurse, new bus driver and lots of unknowns.
When I went to the school and met Hailey's teacher I was able to breath a huge sign of relief. Hailey's teacher was interested in Hailey and listened to all my questions and concerns. She even invited us to an open house so that I could bring in Hailey and have them meet. She asked if there were special treats that Hailey likes, if Hailey get tired fast. Lots of questions that I didn't mind answering.
There were a lot of kinks that came about that we all had to work on. In kindergarten the kids go all day. That means Hailey will need to have her feed at school and also medication. That means the nurse will have to come in and hook Hailey up and then run the feed machine. Since school nurses are assigned multiple schools, Hailey would have multiple nurses come in to do the feeds everyday that Hailey is at school. So I made sure to be there to show them how to do the feeds and medication. I think that was the hardest part of Hailey going to school. You just have to trust and have faith that your child will be fed on time and that the correct amount of medication is given. You're not there to watch and make sure. Hailey has no idea of what and how much she needs and I've been her primary care taker for so long. You just have to trust. You have to build a relationship and an open line of communication between you and the persons caring for your child.
Hailey wants to eat lunch with her friends. There's another problem. Hailey has a feed at school so she IS already fed by the time lunch rolls around. Since Hailey isn't able to pick up a full sized burrito and eat it she would need someone to cut up her food. The school nurse can submit paperwork to request your child's food be chopped or pureed if it's a medical necessity. Did you know that? I didn't.
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.
When I went to the school to register Hailey I was shocked at how friendly, attentive and helpful the staff at Hailey's new school were! They acknowledged me right away. They kind of knew of me from calling and leaving messages previously. They asked about Hailey and I gave out some cards to direct them to the blog and the facebook page. Everyday that I came in they'd greet me and ask how I was. That never happened ONCE before at Hailey's other school! It happened 4 days in a row at the new school!
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:
"Least restrictive environment" (LRE) means that a student who has a disability should have the opportunity to be educated with non-disabled peers, to the greatest extent appropriate. They should have access to the general education curriculum, or any other program that non-disabled peers would be able to access. The student should be provided with supplementary aids and services necessary to achieve educational goals if placed in a setting with non-disabled peers. Academically, a resource room may be available within the school for specialized instruction, with typically no more than two hours per day of services for a student with learning disabilities.[1]Should the nature or severity of his or her disability prevent the student from achieving these goals in a regular education setting, then the student would be placed in a more restrictive environment, such as a special school, classroom within the current school, or a hospital program. Generally, the less opportunity a student has to interact and learn with non-disabled peers, the more the placement is considered to be restricted.
Just reading the highlighted sentence I would think Hailey getting an aid would be a done deal but I was told no. I think I do pretty well at speaking up for Hailey and getting her what she needs, but after this meeting I was in tears. I'm her parent. I'm her advocate. No one will fight for her but ME and I feel as if I am failing. I felt defeated. I wanted someone to tell me how to go about getting what I feel Hailey needs. What more does Hailey not have to be able to do for herself to get an aide that is in the way of this happening? I went home in shock and in tears. I know that the instructional coordinator can only do what she is told or allowed to do. I just think more can be done. I also think she should want to help me get what Hailey obviously needs.
The next day the principal asked to speak with me. She saw how distraught I was with the meeting yesterday. She wanted to help, she said we will work on this together. While Hailey is at school she WILL be safe and she will get an education and she will have fun. I was so happy to hear that she wanted to help Hailey. The principal and assistant principal tell me they check on Hailey everyday. I was happy to hear this. Hailey is at a school where people are going to care and offer to help where they can. This means SO much to me, us.
Another thing that happens in all day kindergarten is Library, Music, Art and PE. Well one more bump. Hailey can't do PE and PE is 2 days a week. Hailey will be attending either Music or Art in place of PE . When Hailey came home last week she told me "I have Paint at school!"
Hailey talks about her backpack all the time. Her lunch box holds her "refrigerated" medication and a few small snacks. Hailey takes the bus on a 20 minute commute. We've had to change bedtime so she gets enough rest to handle a full day of school. We try to have Hailey ready for bed by 7pm so we can have her up by 7 am. She is still getting use to the chaos of our day. Just because school is done doesn't mean we don't also have appointments ALL week. We still have Speech, Occupational and Physical therapy that we need to go to. We need to see our NUCCA Dr.s. Our day is gone by the time we get home and sometimes I think we are both cranky and ready for bed by 7. Poor Josh only gets about a 1/2 hour with Hailey before it's time for her to go to sleep. Weekends are his. He'll pack up Hailey and her feed and head to the mall to walk around and spend time together. She loves it, but Hailey only wants to go into "Girl" stores. She's like me, not a huge fan of Finish Line or Foot Locker or Dick's Sporting Goods. LOL!
So Hailey had a great first week, I had a rough first week that ended up comforting in the end. I met with the teacher, teacher's aide, Hailey's Aide (even thought they call her a floater) the front desk staff, the Physical, Occupational and speech therapist, the school counselor, the assistant principal, and the principal among others. Everyone that works at this school is great. I don't know what this school year will hold in regards to Hailey's health but I know that she'll be safe and around people who care for her. That's what I want for her.
