Tuesday, April 26, 2011

The Verdict on School...

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.)


Kerri said...

You are amazing Jocalyn. I so pray things can change and go smoothly for Kendall. Thank you for sharing you stories. It really helps fend off the lonliness (for lack of better words) that is felt sometimes when fighting these battles. I admire you so much and Kendall, and Kamden, are so lucky to have an amazing strong mom!
Hugs to you all!

Anonymous said...

I wish we lived in the same state and district and that my kiddo was younger than Kendall, so I could ride on your shirttails of advocating! I am a former special ed teacher and now sahm to our little one and am often overwhelmed with what to do that is best for our girl. The good news is that our adoption will be finalized this summer, so then I am legally able to fight for everything she needs, but I struggle with why we have to feel we are fighting - it seems it is a right of our children to get what they need and deserve to have the most functional and happy life -anyways, I appreciate your blog so much and applaud your advocating - you do a great job of it and I am glad you share with others as it has helped me in my quest to get my girl what she needs.


Cassie said...

Well said Jocalyn. It can be incredibly frustrating dealing with the ISD. You are doing a great job. I honestly think that the school districts just want parents to lie down and take whatever is offered. An educated parent who is strongly advocating for their child is an annoyance to the ISD. You are fantastic and what you are doing could have an impact for future kids that are going into this school.

Kara said...

Oh Jocie...how lucky your children are to have a mother and advocate a strong, intelligent and as passionate as you! We are all proud and admire you! I know God is holding your hand throughout this.

Just Another Ordinary Miracle said...

We are in a school district that does not allow for home health to come into the school either. However, our nurses are in our home at night and days are left to me. We have a good system, so this wasn't an issue due to our hours through Katie Beckett.. Anyway my daughter still requires 24 hours around the clock. Our solution was to have a one-on-one parapro with her solely throughout the day. She has been trained with Ivey's care (feeding pumps, seizures, deafblind, etc) It works. Still the nurse is not there should an emergency hit (and boy can they hit).
I would start dipping above this guys head though. Not very professional. And yes, us mamma's know our stuff! And we have skill levels that the nurses working in the schools do not have - critical care skills. Stick your ground.

Holly said...

Well said. I'm proud of you. Don't give up the fight. Dig your heels deeper especially into the side of the difficult admins. Your an amazing mom and I know you will find a way for Kendall to excel in school with or without their help!

Cjengo said...

Well this scares me, ugh. Very well written! By the way, our case worker from MDCP came out with the nurse. They both told Mike and I they are not expecting any cuts that will affect our private duty nursing. Let's hope they are right.

jocalyn said...

ugh...unfortunately, Jennifer, they either don't know, or are not being forthcoming. Talk to your nursing agency about the proposed cuts. MDCP cuts and Medicaid cuts are two seperate proposed bills.