Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Bonnie, Oh my can I relate to what you are saying. I am the parent of a 19 year old very complicated CHARGE'r. I have a lot of unrest about his future and what will be available to him. At this point it is also very stressful to parents because we are a bit " burnt out " so to speak. As far as the labels go...... Mark is currently SXI this has served him the best in the educational aspect. Because he is MULTIPLY impaired without a doubt. I try not to put a whole lot of emphasis on the label itself just what services he is entitled too. I have had to fight very hard at times too. I have a lot of trouble with " behaviors " now that he is older it is much harder. Our lives are so limited because of his constant needs it is a bit overwhelming to say the least. I really feel for you because Mark is the same way about structure. Please keep us posted. The SYSTEM seems to be very hard to navigate and you have to constantly check on what has been done it is very sad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Bonnie I am so sorry you and your family have to go through all this. Tell pat to hang in there we are praying it will all work out and soon. and hshe has the best team working for her--you and paul and a. hugs going your way!!! maria and the guys Transition goof-ups > Ready for the next news? After meeting Pat at the conference I am sure most > of you know she was going to be attending the Helen Keller National Center > this month. I could not be more proud of her. We had worked out all the > criteria, paperwork, ect, and the sponsoring agency last year (the year from hell) > before she graduated. This was her transitional program. > When we got home from the conference the Bureau of Rehab Services who > was supposed to be the sponsoring agency got back in touch with us. See the > man who was supposed to fill out the paper work before she graduated suddenly > retired, didn't do a single bit of the paperwork and no one at BRS knew of Pat > at that agency. This paperwork was supposed to be done by May while she was > still in school! We finally thought we had worked everything out before the > conference. Now sadly not so. In my opinion none of this is really about what > is best for Patty but either personal conflicts and/or financial situations. > Our state has a Governor who has cut programs like a monster. Everyone is > hurt. I think that's why BRS didn't want her. > I understand but still am frustrated beyond belief. Along with all > the meetings last year we also had to fight to get her qualified as disabled for > SSI. It took at least 10 months and numerous calls and doctors appointments. > So now, BRS wanted all that information. With that supposedly Pats vision, > which has never really been clearly understood, might now be worse than we > thought. Who knows and so what? She still has the social needs, she still has > the vocational needs, she still has the organizational needs. It's more than > just her vision and more than just her hearing. There is so much more to Pat > and CHARGE. BRS sounded like they cared and I am sure they did, they just > didn't want this complicated person. Anyway, they tried to get the Board of Ed > Services for the Blind (BESB) involved. I have to say BESB has been the only > program in her life that worked and did well for Pat. So, through more > bureaucratic junk BRS got out of it somehow and now BESB is back involved. Now BESB is > her only service provider. Because she graduated she is now an adult. This > was my mistake I let happen because I thought this was all set and done > because we knew staying in our home school district would be a living hell for her. > Adult services at BESB don't know her or what has been going on. Now she is > dropped back in their laps. We have to do it all again. Plus, Pat has an > appointment for and ERG to figure out what is going on with her vision. They want > to wait till after the ERG which is Sept 18th! We need to know her vision... > > I understand BESB wanting to do the right thing. And they DO care. > They suddenly got Patty back. Pat was visually impaired before, now somehow it > changed. I just don't understand how Pat could graduate, with a transition > program all set and then have it ripped from under her because one person > didn't file the papers as IS STATED IN HER LAST IEP! And by the way, this person > is friends with the very same people I battled with sometimes harshly here in > this school system. I believe he did all of this on purpose knowing it would > mess things up. This is the same man who said it would have been easier if I > just let her be labeled mentally disabled. > So now Patty isn't going on the 11th. She has already packed most > of her things. You wouldn't believe the stress this is putting her and us > through. Her tics from her Tourettes are back big time. I don't think she'll > be going till Oct. Remember Pat is a person with CHARGE who needs structure, > and there is this big open hole in her life. With all this how can I tell her > she will defiantly be going? > Guys, the reason this is happening, from the beginning, is because > CHARGE isn't understood. BRS even had to look it up on the computer. Our own > Country does not have a deaf/blind label. So, no one knows which program she > should be under. The only provider within this state-ever-who has it together > is BESB. And now it is back in their laps. Why are they the ONLY service > provider responsible? Why then can't they work together? This is sickening. > Along with that I thought I could finally be just a mother and happy > with the next step their child is making. That joy flew out the window. We > also have been making changes in our own lives, or I should say finally moving > forward with our lives. That is put on hold too. It is frustrating. > I'm telling everyone because all of your children will bet older one > day and might be going through the same. We have to get deaf/blind as an adult > disability. It won't be so hard then. > So here is my speech. All of the families here really need to > register their children as deaf/blind if that is appropriate. When I said in the > other posts I won't let anyone label Pat as what she's not, part of that is > because the information is used sometimes to get out of things. If we had her as > any other disability she would have been forced to attend a program here which > is not appropriate for her. That's why I fight labels. It pigeon holes > people. So, along with registering our children as deaf/blind each and every one > of us should be a member of the CHARGE foundation. It only costs around 15 to > 20 dollars a family per year. That's where you make the beginning of the > change. Though a FAMILY of people. We through CHARGE are a family. > > Back to the phone calls................. > > Bonnie Mom to Kris 20, Pat CHARGE 18 and scared, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Bonnie, Have you contacted the folks at HKNC and asked for help? They may be very familiar with this kind of situation and have some sage advice. Good luck! Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Hi Bonnie, I know that Patty has to be extremely disappointed. However, perhaps you could find a wayh to structure the time. Can you try to present it as more time with you before her life changes completely, a fun time with family? If not, could you use the time perhaps to work with her on something she needs help with? You know what she needs more than I do, so I have no suggestion on what this would be. There is going to have to be some lobbying done with the U. S. Senate and Congress to either get CHARGE Syndrome listed as a disability with the Social Security Administration or get Deaf-Blind listed as one, or both. Kay Transition goof-ups > Ready for the next news? After meeting Pat at the conference I am sure most > of you know she was going to be attending the Helen Keller National Center > this month. I could not be more proud of her. We had worked out all the > criteria, paperwork, ect, and the sponsoring agency last year (the year from hell) > before she graduated. This was her transitional program. > When we got home from the conference the Bureau of Rehab Services who > was supposed to be the sponsoring agency got back in touch with us. See the > man who was supposed to fill out the paper work before she graduated suddenly > retired, didn't do a single bit of the paperwork and no one at BRS knew of Pat > at that agency. This paperwork was supposed to be done by May while she was > still in school! We finally thought we had worked everything out before the > conference. Now sadly not so. In my opinion none of this is really about what > is best for Patty but either personal conflicts and/or financial situations. > Our state has a Governor who has cut programs like a monster. Everyone is > hurt. I think that's why BRS didn't want her. > I understand but still am frustrated beyond belief. Along with all > the meetings last year we also had to fight to get her qualified as disabled for > SSI. It took at least 10 months and numerous calls and doctors appointments. > So now, BRS wanted all that information. With that supposedly Pats vision, > which has never really been clearly understood, might now be worse than we > thought. Who knows and so what? She still has the social needs, she still has > the vocational needs, she still has the organizational needs. It's more than > just her vision and more than just her hearing. There is so much more to Pat > and CHARGE. BRS sounded like they cared and I am sure they did, they just > didn't want this complicated person. Anyway, they tried to get the Board of Ed > Services for the Blind (BESB) involved. I have to say BESB has been the only > program in her life that worked and did well for Pat. So, through more > bureaucratic junk BRS got out of it somehow and now BESB is back involved. Now BESB is > her only service provider. Because she graduated she is now an adult. This > was my mistake I let happen because I thought this was all set and done > because we knew staying in our home school district would be a living hell for her. > Adult services at BESB don't know her or what has been going on. Now she is > dropped back in their laps. We have to do it all again. Plus, Pat has an > appointment for and ERG to figure out what is going on with her vision. They want > to wait till after the ERG which is Sept 18th! We need to know her vision... > > I understand BESB wanting to do the right thing. And they DO care. > They suddenly got Patty back. Pat was visually impaired before, now somehow it > changed. I just don't understand how Pat could graduate, with a transition > program all set and then have it ripped from under her because one person > didn't file the papers as IS STATED IN HER LAST IEP! And by the way, this person > is friends with the very same people I battled with sometimes harshly here in > this school system. I believe he did all of this on purpose knowing it would > mess things up. This is the same man who said it would have been easier if I > just let her be labeled mentally disabled. > So now Patty isn't going on the 11th. She has already packed most > of her things. You wouldn't believe the stress this is putting her and us > through. Her tics from her Tourettes are back big time. I don't think she'll > be going till Oct. Remember Pat is a person with CHARGE who needs structure, > and there is this big open hole in her life. With all this how can I tell her > she will defiantly be going? > Guys, the reason this is happening, from the beginning, is because > CHARGE isn't understood. BRS even had to look it up on the computer. Our own > Country does not have a deaf/blind label. So, no one knows which program she > should be under. The only provider within this state-ever-who has it together > is BESB. And now it is back in their laps. Why are they the ONLY service > provider responsible? Why then can't they work together? This is sickening. > Along with that I thought I could finally be just a mother and happy > with the next step their child is making. That joy flew out the window. We > also have been making changes in our own lives, or I should say finally moving > forward with our lives. That is put on hold too. It is frustrating. > I'm telling everyone because all of your children will bet older one > day and might be going through the same. We have to get deaf/blind as an adult > disability. It won't be so hard then. > So here is my speech. All of the families here really need to > register their children as deaf/blind if that is appropriate. When I said in the > other posts I won't let anyone label Pat as what she's not, part of that is > because the information is used sometimes to get out of things. If we had her as > any other disability she would have been forced to attend a program here which > is not appropriate for her. That's why I fight labels. It pigeon holes > people. So, along with registering our children as deaf/blind each and every one > of us should be a member of the CHARGE foundation. It only costs around 15 to > 20 dollars a family per year. That's where you make the beginning of the > change. Though a FAMILY of people. We through CHARGE are a family. > > Back to the phone calls................. > > Bonnie Mom to Kris 20, Pat CHARGE 18 and scared, and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Bonnie: We've recently been told by Perkins that should go to Helen Keller when she graduates from Watertown. Has Helen Keller been supportive? I'm scared like the devil from your post. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 Kay, I have scheduled the next week for Pat, thanks. I emphatically agree that we need a definition of CHARGE or deaf/blind as a listed and defined disability. But I think we have to talk with n, Meg and about how to go about doing that. CHARGE Foundation has been in their hands from the very beginning and that is where absolutely everything should stay. I also think lobbying can't be done just by lobbyists and/or parents but by individuals who have CHARGE or are deaf/blind themselves. So what are you doing in the next few years? Think about it Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 Well, let's see. In September I'm going to Florida where Smokey will be presented with prizes for being the 2003 Florida Hall of Fame hero of the year. I guess that's a beginning. Kay Re: Transition goof-ups > Kay, > > I have scheduled the next week for Pat, thanks. I emphatically agree > that we need a definition of CHARGE or deaf/blind as a listed and defined > disability. But I think we have to talk with n, Meg and about how to > go about doing that. CHARGE Foundation has been in their hands from the very > beginning and that is where absolutely everything should stay. I also think > lobbying can't be done just by lobbyists and/or parents but by individuals who > have CHARGE or are deaf/blind themselves. So what are you doing in the next > few years? Think about it > > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 I have been up with for many, many, many hours, but I must post; if I don't make sense, just write to me tomorrow. , n, etc.are not the only ones who will help us. Mike and others in the Hilton-Perkins program have been this route many, mnay times. Hilton-Perkins is distinct from the school. They have been very active at each re-authorization of IDEA - and have been successful. More when I feel more sane. Martha Please don't forget that others are already fighting for the deafbind diagnosis and have done so for years. Perhaps we need to learn how to use what they've already done. Quote Link to comment Share on other sites More sharing options...
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