Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 Hi Sara, I sat on a local ARC board for nine years. The national and state ARC's mostly are involved with disability legislation. They helped get the Olmstead act passed. Many of the various ARC's within the states all have different functions, some run group homes, work agencies and others just run social groups. They all have their own boards that makeup the operating by laws. the local boards hire the directors. All local ARCs pay dues to the state ARC. The fees are determined by number of participants that belong to each local ARC. Each state ARC in turn pays national fees.  Zeb was asked to leave Special Olympics at 8 because he could not swim well. The other kids could swim and win the group medals. I feel the same about Special Olympics that you do about ARC. It's all about the local chapters. I even had lunch with St. regarding this issue. She was one of the first supporters of Special Olympics at it's inception and had worked with them for years. I filed a complaint at the state level. Anytime they are represented at a convention or function that I attend I complain loudly about their practices. Charlyne Mom to Zeb 17 DS  > > > I pissed people off on the Arc facebook page. There are things I don't > agree with and I voice it. They are so hard harted that they are blind. The > ARC is trying to close the SEVTC even though there are peole there who don't > want to move. Moveing someone to a community group home when thye aren't > ready is going to set them up for failure and give group homes a bad image. > > Just saying. I have issues with their adgenda too. > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > Jenn, > > > > > > Don't feel guilty for having more kids. I don't know why outside people > > > want to make us feel bad for trying to balance everything. My family > also > > > said the same about my youngest son who is now 2 1/2 but then the first > > > mother's day as a mother of 3 my parents threw me a party like it was > my > > > first mother's day ever. My older two are not biologically mine. See so > you > > > can't win with people. Just ignore those people. Children area a gift. > All > > > perfect gifts are from above. They are all wonderfully made by the hand > of > > > the creator. He made them just for you. > > > > > > I wish I had something to say about the self injury that isn't what you > > > already know. It's communication. Maybe he gets pain with swallowing? > > > > > > , > > > > > > I agree about the benefits of being a sibling. My daughter is a twin to > my > > > son with DS-ASD and while she is in that embarassed phase I know she > will > > > get bac k to that protectiveness that I remember. She once chase a boy > down > > > the street to get her brother's toy back and since he isn't socially > cued in > > > he hadn't minded having it taken. He'd just found himself something > else to > > > play with. My favorite twin sibling story. > > > > > > Sara, > > > My son's favorite is small size stuffed plushes that he's chewed until > they > > > are really stringy. I toss them at that point because he has wrapped > them > > > around his finger and made it turn blue. So then he starts all over. > The > > > only think he likes more than plushies is see and says. He breaks the > > > spinner because he LOVES to feel it spin. > > > > > > I too have cracked people up with my descriptions. My son's most > > > embarassing (to his twin sister) habit it that he Moos and I tell > people he > > > will be the voice of the chick-fil-a cow when he grows up! Last time I > had > > > him at church a boy told him to " eat grass cow " . I almost laughed until > I > > > looked and realized he was being mean. A visiting child. If he comes > back he > > > will be my new best friend. > > > > > > Margaret, > > > So far no side effects from the Depakote and I was told that it might > even > > > help with his hand flapping. They will at some point need to check the > blood > > > levels so I'll see if I can find out from the Dr about those EEGs. Also > I > > > will ask the NP who did him autism screening about 24 hr EEG that is > used > > > with newly Dx autism. The neuro didn't really care if he got one even > though > > > he was suspected of haveing autism. > > > > > > Jayne, > > > DSAHR still isn't DS-ASD friendly but the new president asked me if I > were > > > interested in starting a playgroup/mini-support group for it. She sin't > sure > > > how many will come out. I'm going to try and have teen volunteers with > > > energy on hand so the parents can talk and the kids can work on play > skills. > > > I do like the schools in VB and I hear Norfolk is still good too. A > friend > > > of mine's husband used to be the adaptive PE teacher in Norfolk. I > wonder if > > > he taught you son. Last name LaFlur (spelling off). He traveled between > the > > > schools. > > > > > > Yes, we were here in 2004-2006. 2004 is when we stopped going to any > event > > > because my son had been kicked out of PALS by the evil descriminating > > > program supervisor. My Mom had the kids so we could honeymoon and well > my > > > son didn't sleep the whole week and went into the PALS day care and > bite > > > somebody (after we thought he'd out grown it), tried to sit on older > teens > > > laps who had G-tubes (he though they were adults), push other kids off > the > > > therapy ball, and made a huge mess with his food (I told them he eats > well > > > and to let him feed himself for skill building - he'd make it up at > > > dinner!). It was the start of the downward spiral that didn't let up > until > > > her was admitted to the ICF. Holiday House of Portsmouth. I was saved > in > > > 2005, found a new daycare run by a former SECEP teacher whose LOVE my > son > > > and didn't mind his lack of Dx, and in 2008 prayerfully he was admitted > to > > > holiday house because he aged out of that day care and was now refusing > to > > > get out of the tub and climbing his bedroom furniture. this is the > stuff > > > that I couldn't put in the essay because it was for skillquest which is > run > > > by the city just like PALS. I work for the city so I didn't want to > piss of > > > the department director my bosses boss. My son just turned 14 on last > > > monday. > > > > > > so that is hwy you say wicked all the time. My high school sweethart > was > > > from Maine. Bar Harbor. Well actually his parents were. I'll check your > blog > > > and probably link it. > > > > > > Beth, > > > Challenger Baseball was crazy hgard for my son. I was again the only > one > > > whose kid needed hand over hand and couldn't follow one step > instructions. I > > > can't even get special olympics to call me back but everyone else seems > to > > > get in no prob. > > > > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > -- > > Sara- different pathways lead to Nirvana. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 Char: I appreciate your defense of ARC> My dh was director of an ARC in VA for 6 years or so - but their work was primarily advocacy for individuals and fiscal agents for SSI. A far change from when the families began it as a therapy source for their children. So I understand change - unwelcome as it is. But since then I have been involved with ARC in 2 different areas and am avoiding it now in a 3rd. When the issue of Waiting Lists was brought to them - both on vvarious local levels all over the country and at the NAtional LEvel, we were bombardied with rhetoric BS. And in the end, they declined to participate. Disability legislation is good for those who are able enough to benefit from it. For those of us who MUST HAVE Medicaide help to keep our family members safe - it isn;t enough for them to back that kind of legilation and not help with the end the waiting lists and ensure portability. OLMSTEAD _ I think you will find MANY people who will dispute the role that ARC played in the passage of OLMSTED> > > > Hi Sara, > I sat on a local ARC board for nine years. The national and state ARC's > mostly are involved with disability legislation. They helped get the > Olmstead act passed. Many of the various ARC's within the states all have > different functions, some run group homes, work agencies and others just run > social groups. They all have their own boards that makeup the operating by > laws. the local boards hire the directors. All local ARCs pay dues to the > state ARC. The fees are determined by number of participants that belong to > each local ARC. Each state ARC in turn pays national fees. > > Zeb was asked to leave Special Olympics at 8 because he could not swim > well. The other kids could swim and win the group medals. I feel the same > about Special Olympics that you do about ARC. It's all about the local > chapters. I even had lunch with St. regarding this issue. She > was one of the first supporters of Special Olympics at it's inception and > had worked with them for years. I filed a complaint at the state level. > Anytime they are represented at a convention or function that I attend I > complain loudly about their practices. > Charlyne > Mom to Zeb 17 DS > > > > > > > > > I pissed people off on the Arc facebook page. There are things I don't > > agree with and I voice it. They are so hard harted that they are blind. > The > > ARC is trying to close the SEVTC even though there are peole there who > don't > > want to move. Moveing someone to a community group home when thye aren't > > ready is going to set them up for failure and give group homes a bad > image. > > > > Just saying. I have issues with their adgenda too. > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > Jenn, > > > > > > > > Don't feel guilty for having more kids. I don't know why outside > people > > > > want to make us feel bad for trying to balance everything. My family > > also > > > > said the same about my youngest son who is now 2 1/2 but then the > first > > > > mother's day as a mother of 3 my parents threw me a party like it was > > my > > > > first mother's day ever. My older two are not biologically mine. See > so > > you > > > > can't win with people. Just ignore those people. Children area a > gift. > > All > > > > perfect gifts are from above. They are all wonderfully made by the > hand > > of > > > > the creator. He made them just for you. > > > > > > > > I wish I had something to say about the self injury that isn't what > you > > > > already know. It's communication. Maybe he gets pain with swallowing? > > > > > > > > , > > > > > > > > I agree about the benefits of being a sibling. My daughter is a twin > to > > my > > > > son with DS-ASD and while she is in that embarassed phase I know she > > will > > > > get bac k to that protectiveness that I remember. She once chase a > boy > > down > > > > the street to get her brother's toy back and since he isn't socially > > cued in > > > > he hadn't minded having it taken. He'd just found himself something > > else to > > > > play with. My favorite twin sibling story. > > > > > > > > Sara, > > > > My son's favorite is small size stuffed plushes that he's chewed > until > > they > > > > are really stringy. I toss them at that point because he has wrapped > > them > > > > around his finger and made it turn blue. So then he starts all over. > > The > > > > only think he likes more than plushies is see and says. He breaks the > > > > spinner because he LOVES to feel it spin. > > > > > > > > I too have cracked people up with my descriptions. My son's most > > > > embarassing (to his twin sister) habit it that he Moos and I tell > > people he > > > > will be the voice of the chick-fil-a cow when he grows up! Last time > I > > had > > > > him at church a boy told him to " eat grass cow " . I almost laughed > until > > I > > > > looked and realized he was being mean. A visiting child. If he comes > > back he > > > > will be my new best friend. > > > > > > > > Margaret, > > > > So far no side effects from the Depakote and I was told that it might > > even > > > > help with his hand flapping. They will at some point need to check > the > > blood > > > > levels so I'll see if I can find out from the Dr about those EEGs. > Also > > I > > > > will ask the NP who did him autism screening about 24 hr EEG that is > > used > > > > with newly Dx autism. The neuro didn't really care if he got one even > > though > > > > he was suspected of haveing autism. > > > > > > > > Jayne, > > > > DSAHR still isn't DS-ASD friendly but the new president asked me if I > > were > > > > interested in starting a playgroup/mini-support group for it. She > sin't > > sure > > > > how many will come out. I'm going to try and have teen volunteers > with > > > > energy on hand so the parents can talk and the kids can work on play > > skills. > > > > I do like the schools in VB and I hear Norfolk is still good too. A > > friend > > > > of mine's husband used to be the adaptive PE teacher in Norfolk. I > > wonder if > > > > he taught you son. Last name LaFlur (spelling off). He traveled > between > > the > > > > schools. > > > > > > > > Yes, we were here in 2004-2006. 2004 is when we stopped going to any > > event > > > > because my son had been kicked out of PALS by the evil descriminating > > > > program supervisor. My Mom had the kids so we could honeymoon and > well > > my > > > > son didn't sleep the whole week and went into the PALS day care and > > bite > > > > somebody (after we thought he'd out grown it), tried to sit on older > > teens > > > > laps who had G-tubes (he though they were adults), push other kids > off > > the > > > > therapy ball, and made a huge mess with his food (I told them he eats > > well > > > > and to let him feed himself for skill building - he'd make it up at > > > > dinner!). It was the start of the downward spiral that didn't let up > > until > > > > her was admitted to the ICF. Holiday House of Portsmouth. I was saved > > in > > > > 2005, found a new daycare run by a former SECEP teacher whose LOVE my > > son > > > > and didn't mind his lack of Dx, and in 2008 prayerfully he was > admitted > > to > > > > holiday house because he aged out of that day care and was now > refusing > > to > > > > get out of the tub and climbing his bedroom furniture. this is the > > stuff > > > > that I couldn't put in the essay because it was for skillquest which > is > > run > > > > by the city just like PALS. I work for the city so I didn't want to > > piss of > > > > the department director my bosses boss. My son just turned 14 on last > > > > monday. > > > > > > > > so that is hwy you say wicked all the time. My high school sweethart > > was > > > > from Maine. Bar Harbor. Well actually his parents were. I'll check > your > > blog > > > > and probably link it. > > > > > > > > Beth, > > > > Challenger Baseball was crazy hgard for my son. I was again the only > > one > > > > whose kid needed hand over hand and couldn't follow one step > > instructions. I > > > > can't even get special olympics to call me back but everyone else > seems > > to > > > > get in no prob. > > > > > > > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Sara- different pathways lead to Nirvana. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 Sara, I am not defending them. I do not agree with some of the local chapter's practices in my state. Some are good others not so good. I do support our state ARC. The director and staff spend most of their time lobbying in the state legislature on disability issues. They have funding and means to make a difference to help pass good legislation or stop bad legislation. I have been with them in the legislature many times. They have done good work in this state. They do go to the national meetings but we are a very small state in comparision and our voting power is outnumbered by the larger states and their differing viewpoints.  Personally, I think the local directors have way too much power in individual decision making. Our local ARC is involved in the social area only. They run a 6 wk summer day camp and provide weekly social outings during the school year. We have the smallest chapter in this state. The camp is too segregated for my liking but that's only my personal opinion. There are many parents with differing opinions. They charge $425.00 for the entire 6 wks with door to door transportation included, cheap sitter. The kids have a blast.  Charlyne Mom to Zeb 17 DS > > > > > > > I pissed people off on the Arc facebook page. There are things I don't > > agree with and I voice it. They are so hard harted that they are blind. > The > > ARC is trying to close the SEVTC even though there are peole there who > don't > > want to move. Moveing someone to a community group home when thye aren't > > ready is going to set them up for failure and give group homes a bad > image. > > > > Just saying. I have issues with their adgenda too. > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > Jenn, > > > > > > > > Don't feel guilty for having more kids. I don't know why outside > people > > > > want to make us feel bad for trying to balance everything. My family > > also > > > > said the same about my youngest son who is now 2 1/2 but then the > first > > > > mother's day as a mother of 3 my parents threw me a party like it was > > my > > > > first mother's day ever. My older two are not biologically mine. See > so > > you > > > > can't win with people. Just ignore those people. Children area a > gift. > > All > > > > perfect gifts are from above. They are all wonderfully made by the > hand > > of > > > > the creator. He made them just for you. > > > > > > > > I wish I had something to say about the self injury that isn't what > you > > > > already know. It's communication. Maybe he gets pain with swallowing? > > > > > > > > , > > > > > > > > I agree about the benefits of being a sibling. My daughter is a twin > to > > my > > > > son with DS-ASD and while she is in that embarassed phase I know she > > will > > > > get bac k to that protectiveness that I remember. She once chase a > boy > > down > > > > the street to get her brother's toy back and since he isn't socially > > cued in > > > > he hadn't minded having it taken. He'd just found himself something > > else to > > > > play with. My favorite twin sibling story. > > > > > > > > Sara, > > > > My son's favorite is small size stuffed plushes that he's chewed > until > > they > > > > are really stringy. I toss them at that point because he has wrapped > > them > > > > around his finger and made it turn blue. So then he starts all over. > > The > > > > only think he likes more than plushies is see and says. He breaks the > > > > spinner because he LOVES to feel it spin. > > > > > > > > I too have cracked people up with my descriptions. My son's most > > > > embarassing (to his twin sister) habit it that he Moos and I tell > > people he > > > > will be the voice of the chick-fil-a cow when he grows up! Last time > I > > had > > > > him at church a boy told him to " eat grass cow " . I almost laughed > until > > I > > > > looked and realized he was being mean. A visiting child. If he comes > > back he > > > > will be my new best friend. > > > > > > > > Margaret, > > > > So far no side effects from the Depakote and I was told that it might > > even > > > > help with his hand flapping. They will at some point need to check > the > > blood > > > > levels so I'll see if I can find out from the Dr about those EEGs. > Also > > I > > > > will ask the NP who did him autism screening about 24 hr EEG that is > > used > > > > with newly Dx autism. The neuro didn't really care if he got one even > > though > > > > he was suspected of haveing autism. > > > > > > > > Jayne, > > > > DSAHR still isn't DS-ASD friendly but the new president asked me if I > > were > > > > interested in starting a playgroup/mini-support group for it. She > sin't > > sure > > > > how many will come out. I'm going to try and have teen volunteers > with > > > > energy on hand so the parents can talk and the kids can work on play > > skills. > > > > I do like the schools in VB and I hear Norfolk is still good too. A > > friend > > > > of mine's husband used to be the adaptive PE teacher in Norfolk. I > > wonder if > > > > he taught you son. Last name LaFlur (spelling off). He traveled > between > > the > > > > schools. > > > > > > > > Yes, we were here in 2004-2006. 2004 is when we stopped going to any > > event > > > > because my son had been kicked out of PALS by the evil descriminating > > > > program supervisor. My Mom had the kids so we could honeymoon and > well > > my > > > > son didn't sleep the whole week and went into the PALS day care and > > bite > > > > somebody (after we thought he'd out grown it), tried to sit on older > > teens > > > > laps who had G-tubes (he though they were adults), push other kids > off > > the > > > > therapy ball, and made a huge mess with his food (I told them he eats > > well > > > > and to let him feed himself for skill building - he'd make it up at > > > > dinner!). It was the start of the downward spiral that didn't let up > > until > > > > her was admitted to the ICF. Holiday House of Portsmouth. I was saved > > in > > > > 2005, found a new daycare run by a former SECEP teacher whose LOVE my > > son > > > > and didn't mind his lack of Dx, and in 2008 prayerfully he was > admitted > > to > > > > holiday house because he aged out of that day care and was now > refusing > > to > > > > get out of the tub and climbing his bedroom furniture. this is the > > stuff > > > > that I couldn't put in the essay because it was for skillquest which > is > > run > > > > by the city just like PALS. I work for the city so I didn't want to > > piss of > > > > the department director my bosses boss. My son just turned 14 on last > > > > monday. > > > > > > > > so that is hwy you say wicked all the time. My high school sweethart > > was > > > > from Maine. Bar Harbor. Well actually his parents were. I'll check > your > > blog > > > > and probably link it. > > > > > > > > Beth, > > > > Challenger Baseball was crazy hgard for my son. I was again the only > > one > > > > whose kid needed hand over hand and couldn't follow one step > > instructions. I > > > > can't even get special olympics to call me back but everyone else > seems > > to > > > > get in no prob. > > > > > > > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Sara- different pathways lead to Nirvana. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 The ARC of Virginia is really the ARC of Northern VA. Non of the other chapter have much to say. They are just getting one together in Hampton Roads which is odd because it's the most populated area in the state. I'm not sure yet if the local chapter will be for the people or for the adgenda. The numbers they spout about costs of group homse vs institution is compleatly false. Group homes cost more. They aren't focused on the people it's the money. It's lacking heart. > > > > > > > > > > > > > > > > > > > Jenn, > > > > > > > > > > Don't feel guilty for having more kids. I don't know why outside > > people > > > > > want to make us feel bad for trying to balance everything. My family > > > also > > > > > said the same about my youngest son who is now 2 1/2 but then the > > first > > > > > mother's day as a mother of 3 my parents threw me a party like it was > > > my > > > > > first mother's day ever. My older two are not biologically mine. See > > so > > > you > > > > > can't win with people. Just ignore those people. Children area a > > gift. > > > All > > > > > perfect gifts are from above. They are all wonderfully made by the > > hand > > > of > > > > > the creator. He made them just for you. > > > > > > > > > > I wish I had something to say about the self injury that isn't what > > you > > > > > already know. It's communication. Maybe he gets pain with swallowing? > > > > > > > > > > , > > > > > > > > > > I agree about the benefits of being a sibling. My daughter is a twin > > to > > > my > > > > > son with DS-ASD and while she is in that embarassed phase I know she > > > will > > > > > get bac k to that protectiveness that I remember. She once chase a > > boy > > > down > > > > > the street to get her brother's toy back and since he isn't socially > > > cued in > > > > > he hadn't minded having it taken. He'd just found himself something > > > else to > > > > > play with. My favorite twin sibling story. > > > > > > > > > > Sara, > > > > > My son's favorite is small size stuffed plushes that he's chewed > > until > > > they > > > > > are really stringy. I toss them at that point because he has wrapped > > > them > > > > > around his finger and made it turn blue. So then he starts all over. > > > The > > > > > only think he likes more than plushies is see and says. He breaks the > > > > > spinner because he LOVES to feel it spin. > > > > > > > > > > I too have cracked people up with my descriptions. My son's most > > > > > embarassing (to his twin sister) habit it that he Moos and I tell > > > people he > > > > > will be the voice of the chick-fil-a cow when he grows up! Last time > > I > > > had > > > > > him at church a boy told him to " eat grass cow " . I almost laughed > > until > > > I > > > > > looked and realized he was being mean. A visiting child. If he comes > > > back he > > > > > will be my new best friend. > > > > > > > > > > Margaret, > > > > > So far no side effects from the Depakote and I was told that it might > > > even > > > > > help with his hand flapping. They will at some point need to check > > the > > > blood > > > > > levels so I'll see if I can find out from the Dr about those EEGs. > > Also > > > I > > > > > will ask the NP who did him autism screening about 24 hr EEG that is > > > used > > > > > with newly Dx autism. The neuro didn't really care if he got one even > > > though > > > > > he was suspected of haveing autism. > > > > > > > > > > Jayne, > > > > > DSAHR still isn't DS-ASD friendly but the new president asked me if I > > > were > > > > > interested in starting a playgroup/mini-support group for it. She > > sin't > > > sure > > > > > how many will come out. I'm going to try and have teen volunteers > > with > > > > > energy on hand so the parents can talk and the kids can work on play > > > skills. > > > > > I do like the schools in VB and I hear Norfolk is still good too. A > > > friend > > > > > of mine's husband used to be the adaptive PE teacher in Norfolk. I > > > wonder if > > > > > he taught you son. Last name LaFlur (spelling off). He traveled > > between > > > the > > > > > schools. > > > > > > > > > > Yes, we were here in 2004-2006. 2004 is when we stopped going to any > > > event > > > > > because my son had been kicked out of PALS by the evil descriminating > > > > > program supervisor. My Mom had the kids so we could honeymoon and > > well > > > my > > > > > son didn't sleep the whole week and went into the PALS day care and > > > bite > > > > > somebody (after we thought he'd out grown it), tried to sit on older > > > teens > > > > > laps who had G-tubes (he though they were adults), push other kids > > off > > > the > > > > > therapy ball, and made a huge mess with his food (I told them he eats > > > well > > > > > and to let him feed himself for skill building - he'd make it up at > > > > > dinner!). It was the start of the downward spiral that didn't let up > > > until > > > > > her was admitted to the ICF. Holiday House of Portsmouth. I was saved > > > in > > > > > 2005, found a new daycare run by a former SECEP teacher whose LOVE my > > > son > > > > > and didn't mind his lack of Dx, and in 2008 prayerfully he was > > admitted > > > to > > > > > holiday house because he aged out of that day care and was now > > refusing > > > to > > > > > get out of the tub and climbing his bedroom furniture. this is the > > > stuff > > > > > that I couldn't put in the essay because it was for skillquest which > > is > > > run > > > > > by the city just like PALS. I work for the city so I didn't want to > > > piss of > > > > > the department director my bosses boss. My son just turned 14 on last > > > > > monday. > > > > > > > > > > so that is hwy you say wicked all the time. My high school sweethart > > > was > > > > > from Maine. Bar Harbor. Well actually his parents were. I'll check > > your > > > blog > > > > > and probably link it. > > > > > > > > > > Beth, > > > > > Challenger Baseball was crazy hgard for my son. I was again the only > > > one > > > > > whose kid needed hand over hand and couldn't follow one step > > > instructions. I > > > > > can't even get special olympics to call me back but everyone else > > seems > > > to > > > > > get in no prob. > > > > > > > > > > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > > > > Sara- different pathways lead to Nirvana. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 AMEN Sara. D > i have yet to figure out the agenda of NAtional ARC or most local ARCS. > Unfortunately, ARC was begun by parents when there was nothing, but now is a > monolith non-profit (and I am using that term loosely) which is seen by > people in the mainstream as the biggest spokesperson for people with > disabilities. > > I think that is wrong. > > As to closing ALL institutions, large group facilities (or now in GA) even > group congregate living like apartment complexes doesn't meet the INDIVIDUAL > needs of people. Again group think. > > For my son, one person and one helper is all that he can handle. But I have > friends with young adults who love the interchange of living 3-6 to house > like in a frat house. INDIVIDUAL NEEDS!!!!! > > And some people have such huge medical, physical, behavior needs, that if > there is not staff 24/7, they would be dead. INDIVIDUAL NEEDS! > > I heartily recommend all of you to www.noewait.net > > > > > > > > > I pissed people off on the Arc facebook page. There are things I don't > > agree with and I voice it. They are so hard harted that they are blind. The > > ARC is trying to close the SEVTC even though there are peole there who don't > > want to move. Moveing someone to a community group home when thye aren't > > ready is going to set them up for failure and give group homes a bad image. > > > > Just saying. I have issues with their adgenda too. > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > Jenn, > > > > > > > > Don't feel guilty for having more kids. I don't know why outside people > > > > want to make us feel bad for trying to balance everything. My family > > also > > > > said the same about my youngest son who is now 2 1/2 but then the first > > > > mother's day as a mother of 3 my parents threw me a party like it was > > my > > > > first mother's day ever. My older two are not biologically mine. See so > > you > > > > can't win with people. Just ignore those people. Children area a gift. > > All > > > > perfect gifts are from above. They are all wonderfully made by the hand > > of > > > > the creator. He made them just for you. > > > > > > > > I wish I had something to say about the self injury that isn't what you > > > > already know. It's communication. Maybe he gets pain with swallowing? > > > > > > > > , > > > > > > > > I agree about the benefits of being a sibling. My daughter is a twin to > > my > > > > son with DS-ASD and while she is in that embarassed phase I know she > > will > > > > get bac k to that protectiveness that I remember. She once chase a boy > > down > > > > the street to get her brother's toy back and since he isn't socially > > cued in > > > > he hadn't minded having it taken. He'd just found himself something > > else to > > > > play with. My favorite twin sibling story. > > > > > > > > Sara, > > > > My son's favorite is small size stuffed plushes that he's chewed until > > they > > > > are really stringy. I toss them at that point because he has wrapped > > them > > > > around his finger and made it turn blue. So then he starts all over. > > The > > > > only think he likes more than plushies is see and says. He breaks the > > > > spinner because he LOVES to feel it spin. > > > > > > > > I too have cracked people up with my descriptions. My son's most > > > > embarassing (to his twin sister) habit it that he Moos and I tell > > people he > > > > will be the voice of the chick-fil-a cow when he grows up! Last time I > > had > > > > him at church a boy told him to " eat grass cow " . I almost laughed until > > I > > > > looked and realized he was being mean. A visiting child. If he comes > > back he > > > > will be my new best friend. > > > > > > > > Margaret, > > > > So far no side effects from the Depakote and I was told that it might > > even > > > > help with his hand flapping. They will at some point need to check the > > blood > > > > levels so I'll see if I can find out from the Dr about those EEGs. Also > > I > > > > will ask the NP who did him autism screening about 24 hr EEG that is > > used > > > > with newly Dx autism. The neuro didn't really care if he got one even > > though > > > > he was suspected of haveing autism. > > > > > > > > Jayne, > > > > DSAHR still isn't DS-ASD friendly but the new president asked me if I > > were > > > > interested in starting a playgroup/mini-support group for it. She sin't > > sure > > > > how many will come out. I'm going to try and have teen volunteers with > > > > energy on hand so the parents can talk and the kids can work on play > > skills. > > > > I do like the schools in VB and I hear Norfolk is still good too. A > > friend > > > > of mine's husband used to be the adaptive PE teacher in Norfolk. I > > wonder if > > > > he taught you son. Last name LaFlur (spelling off). He traveled between > > the > > > > schools. > > > > > > > > Yes, we were here in 2004-2006. 2004 is when we stopped going to any > > event > > > > because my son had been kicked out of PALS by the evil descriminating > > > > program supervisor. My Mom had the kids so we could honeymoon and well > > my > > > > son didn't sleep the whole week and went into the PALS day care and > > bite > > > > somebody (after we thought he'd out grown it), tried to sit on older > > teens > > > > laps who had G-tubes (he though they were adults), push other kids off > > the > > > > therapy ball, and made a huge mess with his food (I told them he eats > > well > > > > and to let him feed himself for skill building - he'd make it up at > > > > dinner!). It was the start of the downward spiral that didn't let up > > until > > > > her was admitted to the ICF. Holiday House of Portsmouth. I was saved > > in > > > > 2005, found a new daycare run by a former SECEP teacher whose LOVE my > > son > > > > and didn't mind his lack of Dx, and in 2008 prayerfully he was admitted > > to > > > > holiday house because he aged out of that day care and was now refusing > > to > > > > get out of the tub and climbing his bedroom furniture. this is the > > stuff > > > > that I couldn't put in the essay because it was for skillquest which is > > run > > > > by the city just like PALS. I work for the city so I didn't want to > > piss of > > > > the department director my bosses boss. My son just turned 14 on last > > > > monday. > > > > > > > > so that is hwy you say wicked all the time. My high school sweethart > > was > > > > from Maine. Bar Harbor. Well actually his parents were. I'll check your > > blog > > > > and probably link it. > > > > > > > > Beth, > > > > Challenger Baseball was crazy hgard for my son. I was again the only > > one > > > > whose kid needed hand over hand and couldn't follow one step > > instructions. I > > > > can't even get special olympics to call me back but everyone else seems > > to > > > > get in no prob. > > > > > > > > > > > > http://thekitchenexperiments.blogspot.com/ > > > > > > > > > > > > > > > > > > > > > > > > -- > > > Sara- different pathways lead to Nirvana. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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