I am sorry for the short notice on this question...
Brigid, my daughter, is ready to start school this year. Due to administrative incompetence (the details of which would take hours to explain) she is still not IN school, a month into the school year, and right now, the majority of the onus falls on the government agency responsible for finding the nursing coverage for her. Brigid is medically fragile and globally developmentally delayed - TPN dependent, receives j feeds through a roux-en-y j tube and drains 24h via her g tube. There have only been TPN dependent kids in the community here for less than a year, and the school board has never dealt with a child like her. The school and the board are being very accommodating, but the community care coordinator is making things VERY difficult.
I have pointed out that nursing is the only thing keeping her out of school, and that they will be held responsible if she is not in the classroom soonest, but if I don't help to get things ready for a successful transition for her, I am just complaining and not working towards getting her in school.
We are fortunate that the school is REALLY working hard to make sure she will be adequately supported from an educational standpoint, so what I am trying to do is get things set up more medically...
I am inclined to think I need to pack emergency supplies, get medical overviews typed up, work on her daily care plan etc., but don't know where to start or how to do it all... The case manager and nursing supervisor are coming to my house this afternoon to put her care plan together, and they SAY she will be starting school Monday morning. I am not convinced it can all be put into play that quickly without me doing a significant amount of footwork.
Any tips or advice from those who have BTDT? Please?
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Starting school
- By regbrigidmom
- Posted October 1, 2009 at 7:56 am · 3 replies
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- By Bensmamma39
- Posted October 1, 2009 at 1:22 pm
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I have no advice for you, i just wanted to say that you make my condition seem like nothing. Bless your daughter's heart. I pray for her and you.
- By dreamlady1931
- Posted October 2, 2009 at 8:53 pm
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It's been 10 years since i've written an individual education plan but i think some things stay constant. Unfortunately, or fortunately, this late start and your extensive knowledge puts you in a driving seat. Giving your case manager your paper work ensures that your daughter's plan is what she needs--not the interpretation of what she needs by the case manager or a nurse--who although is a well trained professional is likely in need of lots of individualized tech and medical information.
I would also insist on a daily 5 minute update for a couple weeks with that changing as everyone gets adjusted to the new person, new environment, etc. Ask for a written review after 2-4 weeks. Yes, it's a bit intense, BUT, having dragged her feet the case manager will likely need some high expectations to make you and your daughter safe and comfortable.
My guess, is that your daughter will win over the troups. She looks adorable. Keep good records, share your tips, your reports. Hopefully, it was just a tough start for a professional who didn't know how to start!
Let us know how it goes!
Mary
- By oleyfriends
- Posted October 5, 2009 at 11:08 am
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The next issue of the Oley newsletter has an article on just this topic. Call or email me for an advanced peek at the article, or to get in touch with the author.
I can also put you in touch with other parents who have gotten their kids streamlined into the school system. Check out the volunteers page posted at: http://www.oley.org/volunteers.html
From this page, you might try contacting:
Anna Cyr
Sue Koprucki
Rose Hoelle
Sheila DeKold
Ann Weaver
You might also try Mary Patnode. A retired school psychologist who might have tips from the administration side.
Roslyn Dahl
Oley Staff Member
dahlr@mail.amc.edu
(800) 776-OLEY
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