Friday, September 10, 2010

Does Mom know yet?

  Have you ever felt like you were the last one to know something?  Yeah me too.  Ever had people talking about you behind your back?  Yeah me too.  Ever had people planning your kiddo's future without your involvement?  Yeah me too!!

  So we started the 2009-10 school year and again we were at Kellogg Marsh.  We had had a year here under our belt, so everything was going pleasantly well.  Ethan really took to being in school all day and seemed to be loving 1st grade.  With his behavior plan in place we had noticed major improvements at school and at home.  My boy seemed happy again and surprised us all by showing us he could secretly read!  I forgot to mention....Ethan's a lazy genius:)  Yup he has been shadowed by nurses his whole life, so why do something when he can get someone else to do it for him?  Thankfully we all know his game and have a no nonsense nurse!  So the little charmer has been paying attention in the midst of his outbursts and shutdowns.  This made me so happy and proud.  The most beautiful sounds I hear in my life are that of my kiddo's voices; their laughs and giggles, when they whisper and gossip, when they hum and sing and one of my favs...when they read aloud!!  It melts my heart. Life was good.

  The only drama we had was at home and I thought it only affected our biggie, right?  I should know better.  So during an overdue meeting with DDD, Division of Developmentally Disabled, it was discovered that with the previous loss of Ethan's SSI, Supplemental Security Income, we would be losing our disability coverage/coupon as well!!  Grrrrr!  So we just had to figure out insurance for Ethan....some phone calls and paperwork later, done.  Yeah not really, apparently no one informed our home care nursing agency.....yeah.  So a month later the agency calls to tell me that they aren't getting paid.  See I didn't know I had to inform them of the loss of coverage, I figured this was something DDD would do or even DSHS. I go rounds with our agency's coordinator, explaining to her that DDD also informed us that the school needed to be paying.  Since Ethan was only getting nurses while at school, those hours should have been billed to the school NOT taken away from home hours.  When DDD and DSHS find out that they are paying for nurses to accompany kiddos at school, they yank those hours away.  If it is ordered by a doctor that your medically needy child has to have a nurse, it is the school's responsibility to provide the care during school.  So I tell the agency's coordinator that she needs to talk to the school and that she can call my case manager, I say that she or her boss would love to go over the policy of who pays for the school hours.   I was then informed that my son wouldn't have a nurse until this was fixed....DAMN!  Okay so the agency has a business to run and I agree with this, they can't send nurses for free, but come on can we catch a break please!  The school could not provide a nurse while the coverage was being figured out and I was stuck at home with a sick little girl who couldn't go anywhere for fear she'd spread it.  So my son missed a little over a week until the school started paying for the nurses.
  Ethan's annual IEP meeting was in February of 2010.  We went over the usual things, behavior, speech, and where he was academically. We chatted about progress made and the areas where improvement was needed.  Oh and please sign this release to verify that you no longer qualify for assistance . Whatever. His speech therapist had awesome news so I ignored that jab.  She had been researching AAC devices for Ethan and brought up a couple ideas, one of which we think might work best!  To go into details about all of our AAC history and current research we have done would take away from my current story line so it will have to wait for another blog:)  I felt the IEP went well and things would go on as usual.

  In May I picked the boys up at school like I always did.  Kids loaded in the truck shoving papers at me, I'm taking Ethan's portable equipment off the nurse's hands, and we go over anything that needs to be discussed.  After we do our exchange Ethan's nurse tells me that she needs to share something with me but the source has to stay anonymous. o.O ......go on.  She informs me that the district has been planning for next year.  Planning a plan for Ethan and his trached buddy.  A plan that involves a different level of nursing care and a another move.  Oh and that she isn't included in the plan... she'd no longer be their nurse.   I stood in front of this woman I'd depended on for nearly three years, a nurse that Ethan absolutely loved, and I started to fume!  Then I remembered that they don't know that I I started to plan for a plan of my own...

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