Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Barb I AM MOM....HEAR ME REALLY ROAR !!!!!!!! thanks for you support... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Have a wonderful trip (s) glad Ty is doing better. I don't know how you do it. Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Luanne, I am glad to hear Ty is at least feeling less pain. I hope that is much, much better than before. I know what you mean about the post, they can be overwhelming sometimes. God bless, Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Luanne, You don’t need a lawyer. No reason to spend good money on this or make enemies. What you do need to do, is go to the school board. Try and make an appointment, tell them this is an emergency. But refuse to discuss it over the phone!! If they don’t see you that day – just go in the next morning and tell them you are not leaving unless you can speak to someone in charge. Then, take you notes, dates in hospital, and a written statement about the whole thing. Tell them you understand the nurse is probably following RULES, but some common sense is needed. If they don’t come across with some help and a phone call to the school principal in your presence, then tell them they will be hearing from your lawyer, because your son IS going to graduate with his class. I AM MOTHER HEAR ME ROAR!! Barb in Texas ( Son, Ken - UC 1991 PSC 8/1999 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Luanne, I am with Barb. I would definitely speak to that principals Boss at the Board of Education. I wouldn't waste good money on a lawyer just yet. If you don't get want you want then threaten with a lawyer most times when they hear lawyer they are more ative. My neighbor is going through a kind of similar situation with our school about getting special help for her son. The principal was clueless and very uncooperative until my neighbor went to the school board. Let them know you are not gonna lie down and let them walk all over you. Good Luck! Take care, in CT wife of Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 luanne, my heart goes out to you. i can't imagine this kind of a nightmare, and you must be so emotionally and physically exhausted. barb's idea about the school board is a good one. be sure you are FULLY acquainted beforehand with whatever that school-board-meeting process would be; they might meet only monthly, and you might have to submit a formal request to speak a certain amount of time beforehand in order to be put on their agenda (otherwise, you could go to all the trouble of attending, only to find that you aren't allowed the floor). also, there may be a time limit on how long they will allow you to state your case. knowing these things in advance will help you better prepare. it all reminds me of recent hurdles in this group regarding the facing of "medical disability tribunals" ...which makes me wonder if there would be some way you could ask ty's doctor for the miracle of accompanying you to the school board meeting, to speak on your behalf? on the other hand, your husband could be right about the lawyer thing -- but before you go the extreme of a court-case route... do you happen to have a lawyer friend" or perhaps someone in your church can ask a lawyer to write a letter, gratis? i'm sure a strongly-worded letter from a lawyer would pack quite a punch. there's a LOT of misinformed (is that more "diplomatic" than saying stupid?) people out there. some hear "liver disease" and automatically assume there's a deviant lifestyle involving alcohol or illicit drugs. jim and i even encountered this during jim's psychological portion of his transplant evaluation, of all things! (the psychiatrist kept trying to trip jim up, asking how often he drinks -- he's a teetotaler -- and then later asking jim if he'd ever had any DUIs... can you believe it?!?!) ...or people assume the disease in question is "contagious." so it seems possible that ty's school administrators may be behaving from a lack of "complete" knowledge of ty's situation, despite all your consistent, massive efforts to the contrary. have you ever heard it said that whatever women must do, they must do TWICE as well as men, to be thought HALF as good? well, at the risk of sounding like a male-basher, it also probably doesn't help the situation much if you happen to find yourself at ty's school, sitting across the desk from a man who views most women as hysterical overreactors, or (at the very least) doesn't take women seriously (so bear THAT in mind if you face a school board of mostly men! they might listen to ty's doctor -- or your husband -- better than they'd listen to you!) there's a "stephen covey" business tenet i learned about "seeking first to understand, BEFORE seeking to be understood." far too many leaders spend a great deal of time explaining their position, their desires, their goals, etc., when instead, they should take a moment to think about how often they are actually seeking to understand others' needs before their own. effective management and motivation of others (such as employees) depends on understanding them. oh, oh! -- i have another idea that might be a good one: see if your doctor would be willing to phone and speak to ty's school nurse! she seems to be under informed (or misinformed), no way is she a liver (or PSC) specialist, and ty's doctor could bring her up-to-speed and address her ill-found concerns. much as you'd probably like to scream at all these people, this still needs to be handled diplomatically... because you don't want to burn any bridges (or, as barb said, make any enemies) before ty graduates from high school. try and hang in there, luanne -- you and your husband (and ty's doctor) are ty's best advocates, and he needs you all to fight this fight for him. and don't forget to do SOMETHING nice for yourself... a hot bubble bath, maybe? we all need you to be able to hang in there for ty, for the long haul. you have all my prayers, maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 They have laws for people with disabilities at the workplace - what about school? MOM PEG is roaring too!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2001 Report Share Posted March 29, 2001 Luanne, It sounds like you have done an outstanding job as a parent and patient advocate/care giver. Kudos to you! Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2001 Report Share Posted April 2, 2001 Hi Luanne, He's home today, thanks for your concern. It was supposed to snow/rain here and his boss told him to stay home. He called his Dr. this morning - he thinks it's a " GI bug " . He doesn't think it's the meds or anything liver-related. But he's been nauseus for 3 days. He decided to stop the meds anyway, to see if anything changes. I'm sending prayers your way as well for Ty..... Gracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2001 Report Share Posted April 17, 2001 I'm so sorry Ty has Crohn's so bad. And I totally understand not responding to email too quickly. Ed stopped taking the Prilosec on the advice of his GI Dr. and is feeling a little better. They seem to think he had an intestinal virus and it took a long time to get out of his system. But, I guess they figure the enzymes and Prilosec weren't going to work for him. Thanks for responding.... Gracie Quote Link to comment Share on other sites More sharing options...
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