First, as a disclaimer...I feel I need to explain my intentions of my blog. Like most parents of special kiddos, in the early days, blogs were my safe place. My place to vent. My place to commiserate with others. My place to give back to our special needs sisterhood. It was where I felt safe gathering new information that would help me along in my journey, and sharing my trials and tribulations along the way.
Yahoo groups came and went for me. I learned a lot, but found myself addicted to my crack-berry and feeling discouraged and overwhelmed with the hundreds of e-mails I got each day. The blog-o-sphere I could control.
There is something very therapeutic to me about writing my thoughts down. Always has been. I have hundreds of journals and scraps of paper accumulated through my life that let me get out the good and bad. Because Kendall has so many people that love her and work with her, my blog also allows me to only have to tell the same story once. I even tell my sister to read my blog when I can't relive things again :)
It keeps family updated on our happenings too. I print it out to keep my family pictures and year in a book on my shelf.
With the growth of Facebook, Twitter, etc.. a lot of other people I don't know read my blog too. I have never had to filter my comments, because for the most part, people are very supportive.
I never want to hurt anyone. I never want to talk about people behind their backs. I will never say anything that is not true either. Though, I am the first to admit when your kids are concerned, and emotions are involved...different people can have different takes on the same experience.
That is where I stand with our school district. But since this is MY blog, MY space, I will now give you MY take on the meeting today.
The director of nursing didn't make things any better. He said he tried to call me back...which he didn't. He said his assistant took down my number wrong. Which she didn't. She confirmed my phone number off of her caller ID. I should also point out my number is correct on all the documents in Mansfield ISD. Nobody else had difficulty calling me. He made no apologies, and even made a joke about the meeting on his way in. (I was sitting in the office) He is an ass. He will NEVER be in charge of my daughter's care. EVER. I am shocked he holds the job he does. He tried talking to me about funding and used the term Medicare instead of Medicaid over and over again. He told me he just spoke with the district attorney and they said it was not possible for Kendall to use her CCP hours (our nursing hours paid for by Insurance and Medicaid) while in school. (I wasn't aware that this meeting was a time to call attorneys...or start throwing the attorney word around)
The Director of Special Education stated it is a district by district decision, and Mansfield has a policy that states CCP hours cannot be used. I asked to see the policy. When and if I receive a copy of that policy, I am looking forward to seeing who wrote such a policy that would require a public school district to pay for things that they don't have to pay for. I was also intrigued when the Director of Nursing told me the funding doesn't come form the SHARS funding, but the district revenue. What a complete waste of District money during a time where teachers are not getting raises, their class sizes are increasing and conference periods decreasing.
The band aid placed on Kendall's IEP (the amendment we made today) states Kendall's private duty nurses will be allowed in the school to train the district provided nurses on Kendall's norm. This is due to a recent letter I received from our Dr. stating Kendall needs nurses who know her. We will have this in place for 45 days. Then it will be summer, and we will start again in the fall. I will get to see first hand the quality of nurses and if they are able to provide better "continuity of care" than our current arrangement.
At first I was upset about the lack of resolution, but I understand. There is no guarantee we will even have Private Duty nursing past the cuts in May. Kendall doesn't have a trach or vent. So it is a very real possibility Mansfield will have to provide her care at the school at some point.
I'd be lying if I didn't seriously consider doing home bound education, or enrolling her in a private pre-school where her CCP nurses can go. But I have come this far, and we will be facing this decision eventually. I truly want what is best for Kendall. I think PPCD is the answer. I'm not going to quit now. But I'm not going to allow her to safety to be compromised. We have options. And the District has a responsibility.
I left the meeting with my head spinning. And I'm still not understanding why they want to pay to have a nurse shadowing our nurses who are already paid for. I also don't understand why it is OK to have our nurses in there for 45 days, charting and having sole care of our daughter, but only for those days. It sounds a bit contradictory to me. But I'm just a mom.
A mom who doesn't let things go and will keep going until she has answers. (or gets the answer changed.)