Annabelle's Going to School!

We WON!!!!!!!!


It hasn't been pretty.
It hasn't been fun.
and it SURE hasn't been easy.


but baby girl is headed to Kindergarten!!








We met with the school again this past Wednesday. Before the meeting, AK, our nurse and I discussed our game plan, what we would settle for and which aspects of the agreement we will not budge on. I have spoken to so many professionals, medically and academically, parents and family over this situation, so I felt confident in what we were asking.. but I also confidently felt like we would lose. I refused to budge on what Annabelle deserves and if that meant we walk out of the school defeated and entertaining the idea of home-schooling her, than so be it.

 

Fortunately, the Health Services Coordinator for the county recognized Annabelle's daily needs as far more cumbersome than what the school nurse would be able to provide and she started writing down notes. The further we got into our discussion on Annabelle's needs, the more solid the team felt that the best avenue for Annabelle in the public school system would be to develop an 'Individual Health Plan' that essentially outlines our daily Plan of Care (that we already keep 100% up to date with our nursing agency anyway). Our private duty nurse will accompany Annabelle to school every day and carry out all her daily needs, just as we do at home (medications, tube feedings, venting, vitals, assessments, more meds, more feeds, more vents etc etc etc).

The 504 Plan outlines the classroom accommodations. The plan protects Annabelle and will allow her:

• to be released to her private nurse for any and all medical needs such as feedings etc
• preferential seating close to instructions (ADHD)
• visuals or manipulatives to sustain instruction (ADHD)
• rest / nap in the school when tired. If this doesn't help, she will be released from the school without penalty
• reduce work such as half an assignment
• use her wheelchair to lunch and all resources (were hoping she won't need or use it much in the classroom)
• adult support during field trips (her nurse)
• access to the bathroom whenever necessary
• to eat or drink when needed
• absences, early dismissal and tardy days without penalty
• alternate arrangements for classroom time missed due to school outbreak, hospitalizations or illness. school will provide a teacher into the home for 6-8hours of instruction x week missed of school.
• wear a face mask to protect from germs
• school will provide an immediate update anytime their is an influx in illness in the school (cold, flu, virus etc)
• permission to switch to 1/2 school days if we find the full day is too much
• special transportation to and from school and during field trips 

I admit, I did get upset during one point in our meeting. My emotions were just too heavy to hold back and silent tears found their way dripping from my chin. I had walked into the room fighting so strong for Annabelle to get the individual medical care she needs because she is so unique.. but when the time came to discuss transportation and her wheelchair, suddenly I found myself resisting those accommodations. This is pathetic, I know, so please don't judge... but the vision I have for my little girls, both of them lined up waiting for the bus on the first day of school is forever gone. That day that I dreamed about when Mady would take her baby sister under her wing and sit beside her on the bus, and when they get to school she would make sure her sissy gets to her classroom okay - that isn't our reality. Our reality is that Annabelle will wave as her sister and all her friends get on the school bus in the morning and Annabelle will wait alone for her own special needs bus that can transport her in her wheelchair. She'll be alone. Her experience will be vastly different than what I want for her. I want her to have as normal as possible of a school experience as she can, but still remaining safe. I don't know... the words I type ramble just as much as the thoughts in my head, but my heart is hurt. We continued the conversation about the special needs transportation and then carried it over to field trips - on those occasions too, she won't be permitted to ride with her friends, she will ride alone on the special needs bus and meet with her class once they arrive.. Their first field trip is to the pumpkin patch, and I thought "There's no way she can ride around in a wheelchair to the pumpkin patch. And even if she walks, there's no way she can make it the hours they will spend there... the first field trip of Kindergarten will be a disaster" - and my heart sank again.

All things considered, AK and I are happy. We are so relieved that Annabelle will get the opportunity to have a classroom experience just the same as the rest of her friends, but we are cautiously nervous. I am terrified beyond belief over the germs in the school and how she will handle the cold/flu season.. and my mommy heart panics for her as she will for the first time be thrown into a classroom and big school.. surrounded by kids in the hallways, lunch room, recess and extracurricular activities and she'll be in a chair. she'll be wearing a face mask. she'll be hooked up to feeding pumps. she won't have the energy and endurance to keep up. My heart hurts that she will identify herself as vastly different and be ashamed and discouraged of who she is. These are all thoughts she communicates openly with us and it kills me. I want her to have fun, I want my baby girl to laugh, run and play. I pray with everything that the kids are not cruel but are welcoming and loving to her. Kids can be so, so mean and Annabelle doesn't deserve that type of judgment at this point in her life.  I want her to shine and excel, I want to see her confidence burst.

We are happy and we won a huge battle this week... but now, I'm scared to death. I wish I had as much courage as Annabelle...