Tuesday, April 19, 2011

Happy Days are Here Again!

We have lots of good news to share…YES!  Makes for a happy blog…
For the many that were so concerned about the lunch room issue, well I am happy to report that we used it as an opportunity to reflect, problem solve, and educate.  This week has been great and Parker is very happily chowing down and chatting it up with his peers.
As many of you know, we had our much awaited homebound meeting yesterday.  Another success!  As always, we were incredibly impressed by his school administrators, support staff, teachers, nurse, and ESE coordinator.  They totally supported us and all that was needed for Parker.  His 504 plan was discontinued and we developed an Individualized Education Plan (IEP).   He has missed 93 days of school this year, and that doesn’t count the “early dismissals” due to illness/pain.
We were very nervous about this meeting because we had been told on multiple occasions that the only way we could get hospital/homebound services was if he was either in a “local” hospital for treatment (meaning they would send a teacher into the hospital while he is getting his infusion…not the most optimal learning time) or if he un-enrolled from his gifted classes (where he is still making a’s and b’s) to enroll in regular ed telephone classes that are scheduled at set times.  At one point, I was told prior to the meeting, that if we were not interested in doing this, then we shouldn’t waste their time and homebound was pushing for virtual school.  But virtual school couldn’t honor his 504 Plan that included physical accommodations and work load accommodations.  And we were asked if we understood that even though the doctor indicated that he could “intermittently attend school”, that they couldn’t provide part time services.  When I asked for policies in writing, I was told there were not any.  So I said that I wanted his meeting, so the team could discuss his needs and possibilities for support. 
I am very familiar with the IEP process, since I am a special educator.  I am also very familiar with inclusion, since this is something that I promote and support in my work.  But I was having the hardest time navigating the homebound services and so was the school staff.  Parker is really the first kid that they have had with this situation, so we were all learning together.  But note that I am purposely using the word “together”…there is something very special and empowering when people come together and especially when it is for a child who will be learning and growing and contributing to our community.
So after we shared who Parker is and what he is experiencing medically, we then asked about his education options.  We were so impressed when one of the people from homebound said, “Well I think we need to think outside of the box here.”  She was spectacular!  She even called the county office to get permission to do what we as a team thought would be best for him.  She here is what will happen.  From now until the end of the school year, he will try an altered schedule.  He is going stay home on Wednesdays so that he has a day to re-coop and rest.  On Tuesdays, after school, the homebound program is going to pay one of his teachers (who was gracious to volunteer) to come to our house to bring missed work and review lessons that he may need help with.  And Parker absolutely adores the teacher who will be doing this!

Then the team discussed starting an eval for alternative and augmentative technology and look at a possible “other health impaired” classification for his IEP for next year.  So we are starting this process in hopes to get it done prior to the start of next school year.  The team will bring various forms of technology out to test him and let him try out the technology to determine what will be the easiest and most effective in assisting him with “writing”.  Some days he can barely hold a pen/pencil and to use the pressure it takes to write is very painful and exhausting.  His IEP is a work in progress.  We wrote up the homebound dual enrollment and all of his needed supports and accommodations/modifications.  We are very very thankful to Parker’s team!
And the good news doesn’t stop here…our primary doc recommended that we request a “case manager” for Parker with our health insurance.  We got a case manager today.  We have ONE person to deal with now….ONE!  And if something isn’t approved or if the doctors are having trouble with approval or if we have questions, we have ONE person who will help us get approvals.   We have had much difficulty around meds and tests, so this is huge!
We are relieved, blessed, happy, and ready to face the new days ahead.  We continue to see progress with the newest infusion treatment that Parker is on.  Thank you to each and every one of you who has been a support to us, a listening ear, and for your constant encouragement.

1 comment:

  1. YAY!!! I am so thrilled that things are finally looking up!!! I am very pleased that you had such an excellent meeting! I'm thankful that they have Parker's best interests at heart. Is he continuing to feel better as well? I hope so!

    If you are close to a Books-A-Million, last time we were in there they had pencil grippers up at the registers. They are an odd shape, but they are the SAME ones that the technological support team for our school gave to Emily. She can't hold a regular pencil since everything affects her hands. That has been fantastic for us. They may just be huge relief for Parker :)

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