Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 i forgot about Lancaster because there are no schools there - but active group home groups some started by parents. There is also the cost of housing. Chester County has some affordable towns - and schools more amenable to sending a child to an APS> But Montgomery is high and so is Delaware. PArts of Philly are inexpensive - as Donna can tell you - but not necessarily where you want to live. Montgomery gets less expensive the more rural you become but then distances become a factor. Sometimes you just have to take a leap of faith. Which is what we did to no service GA - and then lucked out and got everything we need for Elie. > ** > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is very > few houses here for spec needs residential housing. All the extra housing > in town goes for student housing where they can rake in the most money. > Lancaster county had many homes through different organizations. Had I > known this (hindsight is 20/20 !!!) I would have rented here the two years > Gareth went through the Lifelink program, and then, moved back. I keep > telling > myself that Gareth wouldn't do well in a home because he's always so > sickly and wants Mom with him when he's so down. Don't get me wrong, I do > enjoy > living here but have come to realize that Gareth will be with us until it's > > an *Emergency placement*....basically, meaning me and Ter die and he's > alone!!! Of course, my kid sister would be here in two seconds and take him > > to live with her!!! > > As for Gareth's ear....his ENT and PCP don't want to do the IV antibiotics > (yet) because they don't want to risk making matters worse.....meaning him > becoming resistant to antibiotics due to his immune deficiencies. I have > told them I will not go through with the surgery until that option has been > > tried and they understand. He has an appt with the 1st Immunologist this > Friday....the guy who went us to HMC. I will ask him about pushing through > the IV Ig infusions since he and the guy at HMC agree that Gareth's a prime > > candidate for them. The ENT said that would definitely help his ear > infection. > > Take care, Everyone. > Margaret > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Hi Everyone, I've posted alot on this topic since I have been going through it for over four years with my son, .  We reside in York City, York County, PA and our services have been very adequate.  Our LIU Program is fabulous.  We have an active ARC Chapter, YADSA (York Area Down Syndrome Assoc.), Special Olympics, Wrap-around services and the newly opened facility Leg-up Farm.  The key here is, you have to stay on top of things.  Staying involved and be relentless in your requests.  In the beginning we got services through the UCP office for therapies.  Now we basically work through the MH/MR office to begin any process.  The caseworker I have now in York is not near as good as the one we had in Hanover, but that doesn't stop me.  I just keep on making calls and going for what we want.  now resides at Devereux-Kanner Center located in West Chester, PA (right outside Philly).  It takes us approximately two hours each way on Route 30.  We bring him home every other weekend while we are in the process of transitioning him back home.  We have everything in place and are awaiting TSS and BSC services through T.W. Ponessa and Co.  I will be attending an IEP meeting next Wed. to request more time while this is happening.  His funding comes through CCBH (Community Care Behavior Health) for residential and the school district has to pay his tuition since they were unable to provide his educational needs.  It's a no brainer with 's history.  They don't give me to much of a fight anymore. We just have to keep advocating for our children's rights because they can't! , mother to , DS/ASD/Epilsepsy...... etc. ________________________________ To: Sent: Wednesday, October 26, 2011 8:46 PM Subject: Re: Barbara  i forgot about Lancaster because there are no schools there - but active group home groups some started by parents. There is also the cost of housing. Chester County has some affordable towns - and schools more amenable to sending a child to an APS> But Montgomery is high and so is Delaware. PArts of Philly are inexpensive - as Donna can tell you - but not necessarily where you want to live. Montgomery gets less expensive the more rural you become but then distances become a factor. Sometimes you just have to take a leap of faith. Which is what we did to no service GA - and then lucked out and got everything we need for Elie. > ** > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is very > few houses here for spec needs residential housing. All the extra housing > in town goes for student housing where they can rake in the most money. > Lancaster county had many homes through different organizations. Had I > known this (hindsight is 20/20 !!!) I would have rented here the two years > Gareth went through the Lifelink program, and then, moved back. I keep > telling > myself that Gareth wouldn't do well in a home because he's always so > sickly and wants Mom with him when he's so down. Don't get me wrong, I do > enjoy > living here but have come to realize that Gareth will be with us until it's > > an *Emergency placement*....basically, meaning me and Ter die and he's > alone!!! Of course, my kid sister would be here in two seconds and take him > > to live with her!!! > > As for Gareth's ear....his ENT and PCP don't want to do the IV antibiotics > (yet) because they don't want to risk making matters worse.....meaning him > becoming resistant to antibiotics due to his immune deficiencies. I have > told them I will not go through with the surgery until that option has been > > tried and they understand. He has an appt with the 1st Immunologist this > Friday....the guy who went us to HMC. I will ask him about pushing through > the IV Ig infusions since he and the guy at HMC agree that Gareth's a prime > > candidate for them. The ENT said that would definitely help his ear > infection. > > Take care, Everyone. > Margaret > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Could you tell me at what point the school district decided they could no longer provide services? In a message dated 10/26/2011 7:43:59 P.M. Mountain Daylight Time, micks76hd@... writes: Hi Everyone, I've posted alot on this topic since I have been going through it for over four years with my son, . We reside in York City, York County, PA and our services have been very adequate. Our LIU Program is fabulous. We have an active ARC Chapter, YADSA (York Area Down Syndrome Assoc.), Special Olympics, Wrap-around services and the newly opened facility Leg-up Farm. The key here is, you have to stay on top of things. Staying involved and be relentless in your requests. In the beginning we got services through the UCP office for therapies. Now we basically work through the MH/MR office to begin any process. The caseworker I have now in York is not near as good as the one we had in Hanover, but that doesn't stop me. I just keep on making calls and going for what we want. now resides at Devereux-Kanner Center located in West Chester, PA (right outside Philly). It takes us approximately two hours each way on Route 30. We bring him home every other weekend while we are in the process of transitioning him back home. We have everything in place and are awaiting TSS and BSC services through T.W. Ponessa and Co. I will be attending an IEP meeting next Wed. to request more time while this is happening. His funding comes through CCBH (Community Care Behavior Health) for residential and the school district has to pay his tuition since they were unable to provide his educational needs. It's a no brainer with 's history. They don't give me to much of a fight anymore. We just have to keep advocating for our children's rights because they can't! , mother to , DS/ASD/Epilsepsy...... etc. ________________________________ To: Sent: Wednesday, October 26, 2011 8:46 PM Subject: Re: Barbara i forgot about Lancaster because there are no schools there - but active group home groups some started by parents. There is also the cost of housing. Chester County has some affordable towns - and schools more amenable to sending a child to an APS> But Montgomery is high and so is Delaware. PArts of Philly are inexpensive - as Donna can tell you - but not necessarily where you want to live. Montgomery gets less expensive the more rural you become but then distances become a factor. Sometimes you just have to take a leap of faith. Which is what we did to no service GA - and then lucked out and got everything we need for Elie. > ** > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is very > few houses here for spec needs residential housing. All the extra housing > in town goes for student housing where they can rake in the most money. > Lancaster county had many homes through different organizations. Had I > known this (hindsight is 20/20 !!!) I would have rented here the two years > Gareth went through the Lifelink program, and then, moved back. I keep > telling > myself that Gareth wouldn't do well in a home because he's always so > sickly and wants Mom with him when he's so down. Don't get me wrong, I do > enjoy > living here but have come to realize that Gareth will be with us until it's > > an *Emergency placement*....basically, meaning me and Ter die and he's > alone!!! Of course, my kid sister would be here in two seconds and take him > > to live with her!!! > > As for Gareth's ear....his ENT and PCP don't want to do the IV antibiotics > (yet) because they don't want to risk making matters worse.....meaning him > becoming resistant to antibiotics due to his immune deficiencies. I have > told them I will not go through with the surgery until that option has been > > tried and they understand. He has an appt with the 1st Immunologist this > Friday....the guy who went us to HMC. I will ask him about pushing through > the IV Ig infusions since he and the guy at HMC agree that Gareth's a prime > > candidate for them. The ENT said that would definitely help his ear > infection. > > Take care, Everyone. > Margaret > > [Non-text portions of this message have been removed] > > > -- Sara- different pathways lead to Nirvana. [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] ------------------------------------ -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/ --------------------------------------------Yahoo! Groups Links Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Yep Sara.....definitely not where you'd want to live....LOL It's city living. But there really are areas in Philly that are extremely spacious, gorgeous and downright equivalent to country living. But yep, the cost factor. We live in a diverse neighborhood in an almost 100 year old stone house. I grew up 2 blocks away and so long as we are getting Maddie's needs met here, we will stay (even though we are currently empty-nesters in a six bedroom home). We love our beautiful house, our wonderful neighbors and tolerate some of the blight on our periphery inherent in city living. But go 5 miles west and it's a danger zone. That is typical of city living. The inch that you leave the city, you pay more (not talking about downtown obviously, where it's VERY expensive). I realize that services vary county to county, but my experience is that going to the wall seems to be a necessary factor for success no matter where you live. Maddie is getting what she needs now, and has in the past, but honestly never without a fight. Donna > i forgot about Lancaster because there are no schools there - but active > group home groups some started by parents. > > There is also the cost of housing. Chester County has some affordable towns > - and schools more amenable to sending a child to an APS> But Montgomery is > high and so is Delaware. PArts of Philly are inexpensive - as Donna can > tell you - but not necessarily where you want to live. Montgomery gets less > expensive the more rural you become but then distances become a factor. > > Sometimes you just have to take a leap of faith. > > Which is what we did to no service GA - and then lucked out and got > everything we need for Elie. > > > > > ** > > > > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is very > > few houses here for spec needs residential housing. All the extra housing > > in town goes for student housing where they can rake in the most money. > > Lancaster county had many homes through different organizations. Had I > > known this (hindsight is 20/20 !!!) I would have rented here the two years > > Gareth went through the Lifelink program, and then, moved back. I keep > > telling > > myself that Gareth wouldn't do well in a home because he's always so > > sickly and wants Mom with him when he's so down. Don't get me wrong, I do > > enjoy > > living here but have come to realize that Gareth will be with us until it's > > > > an *Emergency placement*....basically, meaning me and Ter die and he's > > alone!!! Of course, my kid sister would be here in two seconds and take him > > > > to live with her!!! > > > > As for Gareth's ear....his ENT and PCP don't want to do the IV antibiotics > > (yet) because they don't want to risk making matters worse.....meaning him > > becoming resistant to antibiotics due to his immune deficiencies. I have > > told them I will not go through with the surgery until that option has been > > > > tried and they understand. He has an appt with the 1st Immunologist this > > Friday....the guy who went us to HMC. I will ask him about pushing through > > the IV Ig infusions since he and the guy at HMC agree that Gareth's a prime > > > > candidate for them. The ENT said that would definitely help his ear > > infection. > > > > Take care, Everyone. > > Margaret > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2011 Report Share Posted October 27, 2011 Hi , It began in 2006 when refused to get on the bus anymore.  He basically became non-compliant in all areas.  Eventually, they started sending a teacher to the house for ONE hour after school.  This went on until 2007.  Again that September, he refused to go to school and definitely needed more than one hour a day of schooling.  This is when I requested that he attend Devereux.  They really did not fight us too much because of him already missing over a year's worth of school and they could not force the issue because they could not provide a teacher for home schooling.  We took him to Devereux on October 12, 2007 and he has been there ever since.  This past Spring, the school and I agreed they had met his needs.  We began the process of transitioning him home.  In March, we started bringing him home every other weekend.  Then we started extending his stays at home.  We now have had the meetings on where he will attend and are awaiting wrap-around services through T.W. Ponessa Co.  A TSS and BSC will be involved in his daily living and schooling.  I hope it works or he will have to return to a RTF. , mother of DS/ASD/Epilepsy..... etc. ________________________________ To: Sent: Wednesday, October 26, 2011 9:56 PM Subject: Re: Barbara  Could you tell me at what point the school district decided they could no longer provide services? In a message dated 10/26/2011 7:43:59 P.M. Mountain Daylight Time, micks76hd@... writes: Hi Everyone, I've posted alot on this topic since I have been going through it for over four years with my son, . We reside in York City, York County, PA and our services have been very adequate. Our LIU Program is fabulous. We have an active ARC Chapter, YADSA (York Area Down Syndrome Assoc.), Special Olympics, Wrap-around services and the newly opened facility Leg-up Farm. The key here is, you have to stay on top of things. Staying involved and be relentless in your requests. In the beginning we got services through the UCP office for therapies. Now we basically work through the MH/MR office to begin any process. The caseworker I have now in York is not near as good as the one we had in Hanover, but that doesn't stop me. I just keep on making calls and going for what we want. now resides at Devereux-Kanner Center located in West Chester, PA (right outside Philly). It takes us approximately two hours each way on Route 30. We bring him home every other weekend while we are in the process of transitioning him back home. We have everything in place and are awaiting TSS and BSC services through T.W. Ponessa and Co. I will be attending an IEP meeting next Wed. to request more time while this is happening. His funding comes through CCBH (Community Care Behavior Health) for residential and the school district has to pay his tuition since they were unable to provide his educational needs. It's a no brainer with 's history. They don't give me to much of a fight anymore. We just have to keep advocating for our children's rights because they can't! , mother to , DS/ASD/Epilsepsy...... etc. ________________________________ To: Sent: Wednesday, October 26, 2011 8:46 PM Subject: Re: Barbara i forgot about Lancaster because there are no schools there - but active group home groups some started by parents. There is also the cost of housing. Chester County has some affordable towns - and schools more amenable to sending a child to an APS> But Montgomery is high and so is Delaware. PArts of Philly are inexpensive - as Donna can tell you - but not necessarily where you want to live. Montgomery gets less expensive the more rural you become but then distances become a factor. Sometimes you just have to take a leap of faith. Which is what we did to no service GA - and then lucked out and got everything we need for Elie. > ** > > > Hi, Everyone....Barbara....don't move to Centre County, Pa. There is very > few houses here for spec needs residential housing. All the extra housing > in town goes for student housing where they can rake in the most money. > Lancaster county had many homes through different organizations. Had I > known this (hindsight is 20/20 !!!) I would have rented here the two years > Gareth went through the Lifelink program, and then, moved back. I keep > telling > myself that Gareth wouldn't do well in a home because he's always so > sickly and wants Mom with him when he's so down. Don't get me wrong, I do > enjoy > living here but have come to realize that Gareth will be with us until it's > > an *Emergency placement*....basically, meaning me and Ter die and he's > alone!!! Of course, my kid sister would be here in two seconds and take him > > to live with her!!! > > As for Gareth's ear....his ENT and PCP don't want to do the IV antibiotics > (yet) because they don't want to risk making matters worse.....meaning him > becoming resistant to antibiotics due to his immune deficiencies. I have > told them I will not go through with the surgery until that option has been > > tried and they understand. He has an appt with the 1st Immunologist this > Friday....the guy who went us to HMC. I will ask him about pushing through > the IV Ig infusions since he and the guy at HMC agree that Gareth's a prime > > candidate for them. The ENT said that would definitely help his ear > infection. > > Take care, Everyone. > Margaret > > [Non-text portions of this message have been removed] > > > -- Sara- different pathways lead to Nirvana. [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] ------------------------------------ -------------------------------------------------- Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. http://groups.yahoo.com/group/ --------------------------------------------Yahoo! Groups Links Quote Link to comment Share on other sites More sharing options...
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