Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 You know something? Please don't take this the wrong way..........but I am glad you were the first one!!! You could have just as easily been an uncaring, thoughtless person. Thank God for the rest of us that YOU are the Pioneer! I see in so many of these communications that alot of us trust and listen to YOU. That, my dear, makes you a very powerful and important person! Not many could fill your shoes. Thank you. Thank you for being " the first " . Jodi Zwain wrote: Jeanie, I have a few minutes before my students return from lunch. Deb said something that has sparked a thought I am living with on a daily basis and I thought you'd like to hear about it. It is in reference to that mourning that life you wanted your child to have.... Even now, after over 17 years of living with RSS and its effects on my son, I go through those periods of mourning, anger, denial, frustration, etc. I'm dealing with them as I type. But what I have learned to do is to deal with them in a healthier way than in previous years. Is the pain any less? No. But handling it in a way that does not ruin my life has been a lesson I've had to learn. And you will, too. We all will and do. Max is going to graduate from high school in 2007. That is not far away. We already know he will not be ready or even able to go to college, so we have to investigate options for him. And therein lies the problem. While he has been in school, he has been under the protective umbrella of an IEP and a child study team. All of a sudden he is going to graduate and the umbrella falls away and we are left out in the rain. No one has the advice to give us anymore. All we have is the Division of Vocational Rehab that Max's case manager told us about and who will send a rep to his next IEP meeting. But even so, we are not sure of exactly what they will do. Max is not developmentally delayed like those who pack groceries in the supermarket or clean the tables and Mc's. He is very high functioning. Then again, he has health and emotional issues that will probably keep him from being able to maintain a full-time job . Then there is health insurance. Once he graduates, unless he is a fulltime student, he may not be covered by our policy anymore. There may be a clause in there that will cover him until he is 21 because of his issues, but no one has given us an answer yet. Who do I turn to? Where do I go? I spend hours on the internet and talking to other parents of older children. Do we have Max apply for SSI? Does he get Medicaid? Do we have to apply for guardianship? It's not easy, but we will muddle through. I'm only telling you this because, as I said, and Deb pointed out, we go through these phases. But we will all help you and you will learn to do what you have to do. It sure isn't easy, but we are all in this together, thank goodness. I just wish there were more at my stage and Max's stage. It's hard to always be the first one. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2005 Report Share Posted December 1, 2005 Thank you, Jeanie. It means a lot. Especially when I feel overwhelmed... Jodi Z - In RSS-Support , Jeanie Kinnicutt <awesome929@y...> wrote: > > You know something? Please don't take this the wrong way..........but I am glad you were the first one!!! You could have just as easily been an uncaring, thoughtless person. Thank God for the rest of us that YOU are the Pioneer! I see in so many of these communications that alot of us trust and listen to YOU. That, my dear, makes you a very powerful and important person! Not many could fill your shoes. Thank you. Thank you for being " the first " . > > Jodi Zwain <magicrss@h...> wrote: Jeanie, > > I have a few minutes before my students return from lunch. Deb said > something that has sparked a thought I am living with on a daily basis and I > thought you'd like to hear about it. It is in reference to that mourning that life > you wanted your child to have.... > > Even now, after over 17 years of living with RSS and its effects on my son, I go > through those periods of mourning, anger, denial, frustration, etc. I'm dealing > with them as I type. But what I have learned to do is to deal with them in a > healthier way than in previous years. Is the pain any less? No. But handling > it in a way that does not ruin my life has been a lesson I've had to learn. And > you will, too. We all will and do. > > Max is going to graduate from high school in 2007. That is not far away. We > already know he will not be ready or even able to go to college, so we have to > investigate options for him. And therein lies the problem. While he has been > in school, he has been under the protective umbrella of an IEP and a child > study team. All of a sudden he is going to graduate and the umbrella falls > away and we are left out in the rain. No one has the advice to give us > anymore. All we have is the Division of Vocational Rehab that Max's case > manager told us about and who will send a rep to his next IEP meeting. But > even so, we are not sure of exactly what they will do. Max is not > developmentally delayed like those who pack groceries in the supermarket or > clean the tables and Mc's. He is very high functioning. Then again, he > has health and emotional issues that will probably keep him from being able > to maintain a full-time job . > > Then there is health insurance. Once he graduates, unless he is a fulltime > student, he may not be covered by our policy anymore. There may be a > clause in there that will cover him until he is 21 because of his issues, but no > one has given us an answer yet. > > Who do I turn to? Where do I go? I spend hours on the internet and talking to > other parents of older children. Do we have Max apply for SSI? Does he get > Medicaid? Do we have to apply for guardianship? It's not easy, but we will > muddle through. > > I'm only telling you this because, as I said, and Deb pointed out, we go > through these phases. But we will all help you and you will learn to do what > you have to do. It sure isn't easy, but we are all in this together, thank > goodness. I just wish there were more at my stage and Max's stage. It's hard > to always be the first one. > > Jodi Z > > > > > > Quote Link to comment Share on other sites More sharing options...
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