Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 <<Our eldest son,PJ, is turning 18 next week; he has Down Syndrome and some very difficult behavioral issues that are out of the norm for Down Syndrome.>> Hi, Everyone........welcome to the group. I have a 20 y/o, Gareth, with DS/Autism/OCD who use to fit this description very well!!! He also had the ODD label......oppositional defiance disorder. Anyways, because of his head banging and negative behaviors, we started him on Risperdal/SSRI drugs at age 10. Life turned completely around for us and we were finally able to 'reach and connect' with him. Has you son been evaluated for autism? As for services after school age (usually 21), I use to think Pa was pretty good but now I am not so sure. My son has numerous medical issues on top of everything else, and quite frankly, I don't picture him ever holding down a steady job. The waiting list for group homes is in the thousands. Sorry for the bummer news on this joyous holiday!!! Take care, Everyone. Margaret **************One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Hi Margaret, Thanks for writing. No ASD for PJ. It's rather clear when you compare PJ and our ASD daughter that his other problem is different. PJ is mostly Obsessive Compulsive stuff with a strong willed personality, the inability to accept anything less or different that what he wants to do. My Dad was like this, but with a IQ probably twice PJ's he could manage to compensate for being so bull-headed. We have tired so many drug combos that I couldn't even mention them, beginning from when PJ was around 10 years old. They either make him manic or put him to sleep or otherwise grumpy/groggy/slow his brain function. Basically, you can't give him enough to take the edge off the OCD symptoms without making him crazy. PJ is very healthy and extremelly active and strong. He was able to get his black belt in Tai Kwon Do on a regular schedule along with his athletic younger brother. He does well at Karate - the people there are wonderful and he listens to them. Other places you would expect him to do well and other people you would expect success with are a disaster. What are standard day services and employment schedules where you live? Here, supported employment is usually 2-3 hours per day and only if you can work without continued support. The workshop setting (which I actually think he would like counting screws all day) is only 8-2:30. there is a lot of day left after that for someone that needs to be constantly busy. The " little " medicaid waiver that PJ currently has to pay for personal assisstants and respite would mostly go to the day services.. I'm not even sure that they could handle PJ's behavior in the workshop setting. Few people can handle PJ. In the right setting and with the right people, PJ is a hard worker, articulate, and personable. If he is unhappy or someone annoys him, he is loud, somewhat aggressive- not usually towards people(unless you are attempting to shut down some electronic video game or show.) He will run away if he is dis-pleased and most people can't catch him here in overweight Tenn. There are some communities, like Innisefree in Va and a Camp Hill community in PA that look great. Meaningful work, a chance for real friends, recreation. The cost of these places seem out of reach when you figure that he will need to be funded for the next 50-70 years. So, that's one reason why I thought it best to try to find out what group home/supported living is like in other states. What does a day look like? How are the homes run? Is a healthy mental and physical lifestyle maintained? Who decides on this? Thanks for listening, ________________________________ To: Sent: Saturday, December 27, 2008 9:14:14 AM Subject: <<Our eldest son,PJ, is turning 18 next week; he has Down Syndrome and some very difficult behavioral issues that are out of the norm for Down Syndrome.>> Hi, Everyone.... .... welcome to the group. I have a 20 y/o, Gareth, with DS/Autism/OCD who use to fit this description very well!!! He also had the ODD label.......oppositi onal defiance disorder. Anyways, because of his head banging and negative behaviors, we started him on Risperdal/SSRI drugs at age 10. Life turned completely around for us and we were finally able to 'reach and connect' with him. Has you son been evaluated for autism? As for services after school age (usually 21), I use to think Pa was pretty good but now I am not so sure. My son has numerous medical issues on top of everything else, and quite frankly, I don't picture him ever holding down a steady job. The waiting list for group homes is in the thousands. Sorry for the bummer news on this joyous holiday!!! Take care, Everyone. Margaret ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 , you just described our . He is almost 20 years old. actually has additional issues due to medical issues and early abuse issues. He is adopted by us. is " successfully " living in a supported living arrangement. He sort of destroyed his last group home since the staff really diidn't " get " him. four staff on duty and they couldn't manage all 5 foot and 125 lbs of him without involving the police. I have lots of anger over this. His last school failed to teach him anything for two years and he couldn't even handle being there for 1/2 a day at a time with two teachers (more anger). Now he is successfully functioning in a high school special ed classroom and in the community. 's home is a ranch style home that he shares with one other man who has autism. They compliment each other well. Life is never dull at their house and we are still working things out with the agency that manages it but all in all things are good. We live in Wisconsin. Services here are quite good but waiting lists are long. ages out of public school services after next school year. He will receive day services funding but we aren't sure if any of the vocational programs can provide him with an environment that is stimulating enough but not rigid in their expectations. I really don't care how many widgets he can package or make, rather that he feels good about himself, where he is at, and that he has a " community " of people that he enjoys being with in his life. He has that at the high school right now and will be sad when he leaves there in a year and 1/2. Karyn , Mom to , 20 on 1/5/2009, 8, r 4, 2 (going on 16, LOL) > > Hi Margaret, > Thanks for writing. No ASD for PJ. It's rather clear when you compare PJ and our ASD daughter that his other problem is different. PJ is mostly Obsessive Compulsive stuff with a strong willed personality, the inability to accept anything less or different that what he wants to do. My Dad was like this, but with a IQ probably twice PJ's he could manage to compensate for being so bull-headed. > We have tired so many drug combos that I couldn't even mention them, beginning from when PJ was around 10 years old. They either make him manic or put him to sleep or otherwise grumpy/groggy/slow his brain function. Basically, you can't give him enough to take the edge off the OCD symptoms without making him crazy. > > PJ is very healthy and extremelly active and strong. He was able to get his black belt in Tai Kwon Do on a regular schedule along with his athletic younger brother. He does well at Karate - the people there are wonderful and he listens to them. Other places you would expect him to do well and other people you would expect success with are a disaster. > > What are standard day services and employment schedules where you live? > Here, supported employment is usually 2-3 hours per day and only if you can work without continued support. The workshop setting (which I actually think he would like counting screws all day) is only 8- 2:30. there is a lot of day left after that for someone that needs to be constantly busy. The " little " medicaid waiver that PJ currently has to pay for personal assisstants and respite would mostly go to the day services.. I'm not even sure that they could handle PJ's behavior in the workshop setting. > > Few people can handle PJ. In the right setting and with the right people, PJ is a hard worker, articulate, and personable. If he is unhappy or someone annoys him, he is loud, somewhat aggressive- not usually towards people(unless you are attempting to shut down some electronic video game or show.) He will run away if he is dis- pleased and most people can't catch him here in overweight Tenn. > > There are some communities, like Innisefree in Va and a Camp Hill community in PA that look great. Meaningful work, a chance for real friends, recreation. The cost of these places seem out of reach when you figure that he will need to be funded for the next 50-70 years. So, that's one reason why I thought it best to try to find out what group home/supported living is like in other states. What does a day look like? How are the homes run? Is a healthy mental and physical lifestyle maintained? Who decides on this? > > Thanks for listening, > > > > > > > > ________________________________ > > To: > Sent: Saturday, December 27, 2008 9:14:14 AM > Subject: > > > <<Our eldest son,PJ, is turning 18 next week; he has Down > Syndrome and some very difficult behavioral issues that are out of the norm > for Down Syndrome.>> > > Hi, Everyone.... .... welcome to the group. I have a 20 y/o, Gareth, > with DS/Autism/OCD who use to fit this description very well!!! He also had the > ODD label.......oppositi onal defiance disorder. Anyways, because of his head > banging and negative behaviors, we started him on Risperdal/SSRI drugs at > age 10. Life turned completely around for us and we were finally able to > 'reach and connect' with him. Has you son been evaluated for autism? As for > services after school age (usually 21), I use to think Pa was pretty good but now > I am not so sure. My son has numerous medical issues on top of everything > else, and quite frankly, I don't picture him ever holding down a steady job. > The waiting list for group homes is in the thousands. Sorry for the bummer > news on this joyous holiday!!! > > Take care, Everyone. > Margaret > > > ************ **One site keeps you connected to all your email: AOL Mail, > Gmail, and Yahoo Mail. Try it now. > (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi Karyn Thank you for writing. I'm suprised you were able to get a supported living arrangement for considering he is so young. How do you get to the top of the wait list in Wisconsin? Here in Tenn you have to be practically homeless with no living relatives. What would you say are the characteristics of a good agency? What would you look for in a group home or supported living situation if you had to look again? One big concern I have is how is free time spent. There are 24 hours in a day and it seems unlikely to fill those hours with employment- 2 -3 hours seems to be the norm. What are you day service programs like. Here they are from 8-2:30 and I really don't think they can handle my black belt, runner, lock picker, mechanical son without him being in a highly restrictive environment. Thank you ________________________________ To: Sent: Saturday, December 27, 2008 10:45:51 PM Subject: Re: , you just described our . He is almost 20 years old. actually has additional issues due to medical issues and early abuse issues. He is adopted by us. is " successfully " living in a supported living arrangement. He sort of destroyed his last group home since the staff really diidn't " get " him. four staff on duty and they couldn't manage all 5 foot and 125 lbs of him without involving the police. I have lots of anger over this. His last school failed to teach him anything for two years and he couldn't even handle being there for 1/2 a day at a time with two teachers (more anger). Now he is successfully functioning in a high school special ed classroom and in the community. 's home is a ranch style home that he shares with one other man who has autism. They compliment each other well. Life is never dull at their house and we are still working things out with the agency that manages it but all in all things are good. We live in Wisconsin. Services here are quite good but waiting lists are long. ages out of public school services after next school year. He will receive day services funding but we aren't sure if any of the vocational programs can provide him with an environment that is stimulating enough but not rigid in their expectations. I really don't care how many widgets he can package or make, rather that he feels good about himself, where he is at, and that he has a " community " of people that he enjoys being with in his life. He has that at the high school right now and will be sad when he leaves there in a year and 1/2. Karyn , Mom to , 20 on 1/5/2009, 8, r 4, 2 (going on 16, LOL) > > Hi Margaret, > Thanks for writing. No ASD for PJ. It's rather clear when you compare PJ and our ASD daughter that his other problem is different. PJ is mostly Obsessive Compulsive stuff with a strong willed personality, the inability to accept anything less or different that what he wants to do. My Dad was like this, but with a IQ probably twice PJ's he could manage to compensate for being so bull-headed. > We have tired so many drug combos that I couldn't even mention them, beginning from when PJ was around 10 years old. They either make him manic or put him to sleep or otherwise grumpy/groggy/ slow his brain function. Basically, you can't give him enough to take the edge off the OCD symptoms without making him crazy. > > PJ is very healthy and extremelly active and strong. He was able to get his black belt in Tai Kwon Do on a regular schedule along with his athletic younger brother. He does well at Karate - the people there are wonderful and he listens to them. Other places you would expect him to do well and other people you would expect success with are a disaster. > > What are standard day services and employment schedules where you live? > Here, supported employment is usually 2-3 hours per day and only if you can work without continued support. The workshop setting (which I actually think he would like counting screws all day) is only 8- 2:30. there is a lot of day left after that for someone that needs to be constantly busy. The " little " medicaid waiver that PJ currently has to pay for personal assisstants and respite would mostly go to the day services.. I' m not even sure that they could handle PJ's behavior in the workshop setting. > > Few people can handle PJ. In the right setting and with the right people, PJ is a hard worker, articulate, and personable. If he is unhappy or someone annoys him, he is loud, somewhat aggressive- not usually towards people(unless you are attempting to shut down some electronic video game or show.) He will run away if he is dis- pleased and most people can't catch him here in overweight Tenn. > > There are some communities, like Innisefree in Va and a Camp Hill community in PA that look great. Meaningful work, a chance for real friends, recreation. The cost of these places seem out of reach when you figure that he will need to be funded for the next 50-70 years. So, that's one reason why I thought it best to try to find out what group home/supported living is like in other states. What does a day look like? How are the homes run? Is a healthy mental and physical lifestyle maintained? Who decides on this? > > Thanks for listening, > > > > > > > > ____________ _________ _________ __ > > To: @yahoogrou ps.com > Sent: Saturday, December 27, 2008 9:14:14 AM > Subject: > > > <<Our eldest son,PJ, is turning 18 next week; he has Down > Syndrome and some very difficult behavioral issues that are out of the norm > for Down Syndrome.>> > > Hi, Everyone.... .... welcome to the group. I have a 20 y/o, Gareth, > with DS/Autism/OCD who use to fit this description very well!!! He also had the > ODD label....... oppositi onal defiance disorder. Anyways, because of his head > banging and negative behaviors, we started him on Risperdal/SSRI drugs at > age 10.. Life turned completely around for us and we were finally able to > 'reach and connect' with him. Has you son been evaluated for autism? As for > services after school age (usually 21), I use to think Pa was pretty good but now > I am not so sure. My son has numerous medical issues on top of everything > else, and quite frankly, I don't picture him ever holding down a steady job. > The waiting list for group homes is in the thousands. Sorry for the bummer > news on this joyous holiday!!! > > Take care, Everyone. > Margaret > > > ************ **One site keeps you connected to all your email: AOL Mail, > Gmail, and Yahoo Mail. Try it now. > (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 hello cathy!! welcome to the group! my oldest, nathan, with , add/hd, ocd, .... is 17 right now, will be turning 18 this coming summer. sniff. He will be in school until he is 20, as he turns 21 a couple weeks before school starts again so unable to go that year. We started nathan in a work program last year as the school was doing horrible with vocational training, and he loves it at the workshop dearly, making friends, talking more...not always words one likes to hear if you catch my drift, but in the least talking more. Ofcourse the school wont pay for it but we get funding through his waiver monies for it. goes for an hour mon-fri during school year, and by his senior year will be going half days. I havnt decided if he will go half days or full days yet this summer. We are in the process of doing all his 18yr old stuff, applying for guardianship, applying for his SSI, checking with insurance etc as his medcaid after our insurance is still pretty crappy, want to keep him covered as long as we can. One can really tell their kids are growing up with dont even get the child credit thing on your tax returns anymore, which happens if they turn 17 that year by the way for those of you with younger ones. I think services depend on what your plans are with pj. Does he receive any services yet? is he on any waiver programs? we got on these right away when nathan was a toddler. We dont plan on putting nathan in a group home currently. Someday if he really wants to move out then we will check into but for now hubby and i agree group homes are out. I dont know how they are in your state, but they often get a bad rap in iowa. And being a nurse for several years now, i have seen different places and types of cares, understand they mean well but things just arnet done how they need to be in my eyes, not from a lack of trying by any facility, but we just arnt even bother to put nathan in that equation. But remember this is what works for us, we are young parents, only 37, had nathan (our first child) when i was 20, so we have the energy for now. Each family's needs are different. I am not by any way saying no one should do group homes or facilities etc. it is what ever works out for the family. And I know all the parents on here do or would keep very close tabs on their children under care or otherwise. shawna http://sewshawna.blogspot.com ________________________________ To: Sent: Saturday, December 27, 2008 8:14:14 AM Subject: <<Our eldest son,PJ, is turning 18 next week; he has Down Syndrome and some very difficult behavioral issues that are out of the norm for Down Syndrome.>> Hi, Everyone.... .... welcome to the group. I have a 20 y/o, Gareth, with DS/Autism/OCD who use to fit this description very well!!! He also had the ODD label......oppositi onal defiance disorder. Anyways, because of his head banging and negative behaviors, we started him on Risperdal/SSRI drugs at age 10. Life turned completely around for us and we were finally able to 'reach and connect' with him. Has you son been evaluated for autism? As for services after school age (usually 21), I use to think Pa was pretty good but now I am not so sure. My son has numerous medical issues on top of everything else, and quite frankly, I don't picture him ever holding down a steady job. The waiting list for group homes is in the thousands. Sorry for the bummer news on this joyous holiday!!! Take care, Everyone. Margaret ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2008 Report Share Posted December 31, 2008 , went into a group home placement at 15 years old. His behavior became unmanageable at home due to a drastic cut to our in-home supports. The cuts were due to a state budget crisis, not any change in our needs.We had to hire a lawyer at that point to even get the placement. It was an ugly fight. had a waiver slot due to his foster care placement before his adoption. Even with his waiver I couldn't get services during the budget crisis. At 17 1/2 years old he moved into an adult group home that I thought would be great for him but I was very wrong. It culminated in causing major damage to the home. The police intervening and us bringing him home for 2 1/2 months while an alternative was developed. So, this setting was developed with a new agency serving our county. There was another fellow who needed placement ASAP that hadn't done well in group homes. I used to believe that there were certain things to look for in finding a good placement but now believe that the staff in a program really make or break a deal. We haven't had to deal with the day programming yet since is a student for another year but it will be a struggle. he currently goes to a vocational site with school staff and the voc. site really likes him but, they haven't had to be the " bad " guys and set the limits or maintain him for more than 1 hour two times a week. They haven't had a great track record of managing difficult clients. Instead they tend to take the easy way out. Cutting hours, not able to find interesting jobs for them, etc. But, as you can tell I have become a pretty good, at least loud, advocate for and we plug along. Karyn > > Hi Karyn > > Thank you for writing. > I'm suprised you were able to get a supported living arrangement for considering he is so young. How do you get to the top of the wait list in Wisconsin? Here in Tenn you have to be practically homeless with no living relatives. > > What would you say are the characteristics of a good agency? What would you look for in a group home or supported living situation if you had to look again? > > One big concern I have is how is free time spent. There are 24 hours in a day and it seems unlikely to fill those hours with employment- 2 -3 hours seems to be the norm. What are you day service programs like. Here they are from 8-2:30 and I really don't think they can handle my black belt, runner, lock picker, mechanical son without him being in a highly restrictive environment. > > Thank you > > > > > > > > ________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2009 Report Share Posted January 2, 2009 Hi Karyn, Thanks for writing. You're probably correct about the staff making the difference. PJ is so good with some people and wild and unmanageable with others. Just wish I could tell ahead of time which would be which. Thanks again, ________________________________ To: Sent: Wednesday, December 31, 2008 9:52:05 AM Subject: Re: , went into a group home placement at 15 years old. His behavior became unmanageable at home due to a drastic cut to our in-home supports. The cuts were due to a state budget crisis, not any change in our needs.We had to hire a lawyer at that point to even get the placement. It was an ugly fight. had a waiver slot due to his foster care placement before his adoption. Even with his waiver I couldn't get services during the budget crisis. At 17 1/2 years old he moved into an adult group home that I thought would be great for him but I was very wrong. It culminated in causing major damage to the home. The police intervening and us bringing him home for 2 1/2 months while an alternative was developed. So, this setting was developed with a new agency serving our county. There was another fellow who needed placement ASAP that hadn't done well in group homes. I used to believe that there were certain things to look for in finding a good placement but now believe that the staff in a program really make or break a deal. We haven't had to deal with the day programming yet since is a student for another year but it will be a struggle. he currently goes to a vocational site with school staff and the voc. site really likes him but, they haven't had to be the " bad " guys and set the limits or maintain him for more than 1 hour two times a week. They haven't had a great track record of managing difficult clients. Instead they tend to take the easy way out. Cutting hours, not able to find interesting jobs for them, etc. But, as you can tell I have become a pretty good, at least loud, advocate for and we plug along. Karyn > > Hi Karyn > > Thank you for writing. > I'm suprised you were able to get a supported living arrangement for considering he is so young. How do you get to the top of the wait list in Wisconsin? Here in Tenn you have to be practically homeless with no living relatives. > > What would you say are the characteristics of a good agency? What would you look for in a group home or supported living situation if you had to look again? > > One big concern I have is how is free time spent. There are 24 hours in a day and it seems unlikely to fill those hours with employment- 2 -3 hours seems to be the norm. What are you day service programs like. Here they are from 8-2:30 and I really don't think they can handle my black belt, runner, lock picker, mechanical son without him being in a highly restrictive environment. > > Thank you > > > > > > > > ____________ _________ _________ __ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2009 Report Share Posted January 2, 2009 Hi a, Thanks for writing. I doubt that I'll be happy with any group home setting for PJ, but he is very disruptive and we have 4 younger children including another " special needs " child. By no less than a miracle I have PJ on a small waiver which funds some personal assistants and respite. The trouble is that getting a p.a. is very difficult. They have to be male and they have to be creative and active. I have the best luck with students from a small Christian college. Currently, I have a great guy that is on the swim team. But, he has to jump whenever the coach says so and that leaves me high and dry for long periods. If I can't use the time that I'm alloted I am in danger of losing my waiver funds. The funds are not enough for supported living and if I use them for the workshop there won't be any left for p.a. and respite. I'm just not sure if we even got on the big waiver (almost impossible anyway)there would be anything for PJ here. Recreation opportunities are limited. Jobs are not going to be creative and interesting enough to keep him happy. If he's bored or unhappy his behavior will not be managable. Thanks for sharing your experience. ________________________________ To: Sent: Wednesday, December 31, 2008 3:14:05 AM Subject: Re: hello cathy!! welcome to the group! my oldest, nathan, with , add/hd, ocd, .... is 17 right now, will be turning 18 this coming summer. sniff. He will be in school until he is 20, as he turns 21 a couple weeks before school starts again so unable to go that year. We started nathan in a work program last year as the school was doing horrible with vocational training, and he loves it at the workshop dearly, making friends, talking more...not always words one likes to hear if you catch my drift, but in the least talking more. Ofcourse the school wont pay for it but we get funding through his waiver monies for it. goes for an hour mon-fri during school year, and by his senior year will be going half days. I havnt decided if he will go half days or full days yet this summer. We are in the process of doing all his 18yr old stuff, applying for guardianship, applying for his SSI, checking with insurance etc as his medcaid after our insurance is still pretty crappy, want to keep him covered as long as we can. One can really tell their kids are growing up with dont even get the child credit thing on your tax returns anymore, which happens if they turn 17 that year by the way for those of you with younger ones. I think services depend on what your plans are with pj. Does he receive any services yet? is he on any waiver programs? we got on these right away when nathan was a toddler. We dont plan on putting nathan in a group home currently. Someday if he really wants to move out then we will check into but for now hubby and i agree group homes are out. I dont know how they are in your state, but they often get a bad rap in iowa. And being a nurse for several years now, i have seen different places and types of cares, understand they mean well but things just arnet done how they need to be in my eyes, not from a lack of trying by any facility, but we just arnt even bother to put nathan in that equation. But remember this is what works for us, we are young parents, only 37, had nathan (our first child) when i was 20, so we have the energy for now. Each family's needs are different. I am not by any way saying no one should do group homes or facilities etc. it is what ever works out for the family. And I know all the parents on here do or would keep very close tabs on their children under care or otherwise. shawna http://sewshawna. blogspot. com ____________ _________ _________ __ To: @yahoogrou ps.com Sent: Saturday, December 27, 2008 8:14:14 AM Subject: <<Our eldest son,PJ, is turning 18 next week; he has Down Syndrome and some very difficult behavioral issues that are out of the norm for Down Syndrome.>> Hi, Everyone.... ..... welcome to the group. I have a 20 y/o, Gareth, with DS/Autism/OCD who use to fit this description very well!!! He also had the ODD label......oppositi onal defiance disorder. Anyways, because of his head banging and negative behaviors, we started him on Risperdal/SSRI drugs at age 10. Life turned completely around for us and we were finally able to 'reach and connect' with him. Has you son been evaluated for autism? As for services after school age (usually 21), I use to think Pa was pretty good but now I am not so sure. My son has numerous medical issues on top of everything else, and quite frankly, I don't picture him ever holding down a steady job. The waiting list for group homes is in the thousands. Sorry for the bummer news on this joyous holiday!!! Take care, Everyone. Margaret ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 We have it narrowed down to no male staff for . He will test them to no end. He climbed on the roof last summer with a male staff. Testosterone????? So, does well with staff that can be Dr. Jekyll, Mr Hyde. Be hard on him and turn around and love him to death. also does well with people who are fun. Don't get stuck in your rules and regs and don't hesitate to be genuine. I'm trying to write up a page for staff on what we, 's family, want for him but it is a daunting thing to write. Not to mention emotional. I wish I could just move Dave Hingsburger into his program for a month or so and then have no staff turnover after that. Karyn > > > > Hi Karyn > > > > Thank you for writing. > > I'm suprised you were able to get a supported living arrangement > for considering he is so young. How do you get to the top of > the wait list in Wisconsin? Here in Tenn you have to be practically > homeless with no living relatives. > > > > What would you say are the characteristics of a good agency? What > would you look for in a group home or supported living situation if > you had to look again? > > > > One big concern I have is how is free time spent. There are 24 > hours in a day and it seems unlikely to fill those hours with > employment- 2 -3 hours seems to be the norm. What are you day > service programs like. Here they are from 8-2:30 and I really don't > think they can handle my black belt, runner, lock picker, mechanical > son without him being in a highly restrictive environment. > > > > Thank you > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2009 Report Share Posted January 3, 2009 Writing down values for ones son is such an issue!!! When I started to write one for Elie - with people he already knew, I was still working on this for days - and never finished it to my satisfaction. To have people understand that need for structure, rules, unending lack of change and at the same time be loving and flexible. Difficult at best. > We have it narrowed down to no male staff for . He will test > them to no end. He climbed on the roof last summer with a male staff. > Testosterone????? > So, does well with staff that can be Dr. Jekyll, Mr Hyde. Be > hard on him and turn around and love him to death. also does > well with people who are fun. Don't get stuck in your rules and regs > and don't hesitate to be genuine. > I'm trying to write up a page for staff on what we, 's family, > want for him but it is a daunting thing to write. Not to mention > emotional. > I wish I could just move Dave Hingsburger into his program for a > month or so and then have no staff turnover after that. > > Karyn > > > > > > > > Hi Karyn > > > > > > Thank you for writing. > > > I'm suprised you were able to get a supported living arrangement > > for considering he is so young. How do you get to the top of > > the wait list in Wisconsin? Here in Tenn you have to be > practically > > homeless with no living relatives. > > > > > > What would you say are the characteristics of a good agency? > What > > would you look for in a group home or supported living situation if > > you had to look again? > > > > > > One big concern I have is how is free time spent. There are 24 > > hours in a day and it seems unlikely to fill those hours with > > employment- 2 -3 hours seems to be the norm. What are you day > > service programs like. Here they are from 8-2:30 and I really > don't > > think they can handle my black belt, runner, lock picker, > mechanical > > son without him being in a highly restrictive environment. > > > > > > Thank you > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 thats pretty sad there arnt any activities for pj. Our town is fairly small only around 5000, in rural iowa, and they do a fair job for the disabled. they just built two more group home settings, they have several, and also have a good handful of private home settings where two to five disabled adults may live together and have a health aid or nurse around the clock when they are home, As for the workshop they are constantly upgrading and inventing new jobs, they got rid of can redemption a few years ago, and do document shredding among various other things for the places around the county. As they progress they get to learn towork at jobs around town with job coach, like at hy-vee or pizza hut or one of the factories depending on their skills and likes or dislikes. participates mostly in a group doing orders for that oriental trading (party supplies etc) and he is very good at it, has a buddy who waits for him all day, wont even work until nathan gets there, lol. We also have a place called " The Drop In Center " and its a hang out for the disabled, always a few health aids there, there are computers and game systmes, pool, foose ball, dvd's and tv, a couple goodie machines, but there is a fridge and small kitchenette too for a few who go there for respite, they have a monthly calender of events. card tournaments, like uno or skipbo etc, foose ball or pool tournaments. special meals, everyone meets on that day there for a meal like chillie etc. they go to the movies at least one a month, oh and usually have a movie day or two there also. things like that. goes there every wednesday afternoon and occasional other events. When nathan was little i was against these things, but seeing how nathan has really opened up and actually made friends with others who are disabled instead of the non disabled kids gave me a big reality check to my heart. These are the people nathan will mostly always be around, they dont judge him or make fun of him, they always talk to him, never ignore him, not afraid to touch him or be close to him, lol last friday I took the boys with me bowling leagues as no school until today, and there are 3 different teams of disabled women from the workshop/group homes, and they ALL know nathan, they were immediately there talking to him and seeing him smile and actually reply hisown answer was just lovely. later on that afternoon one of the guys from the workshop showed up and him and nathan played videogames, lol, nathan was mad i would only give him two dollars, he wanted " more quarters please " but i distracted him with a pop lol. I will pray for pj and hopes that you guys are able to find something halfway for him and your family. shawna http://sewshawna.blogspot.com ________________________________ To: Sent: Friday, January 2, 2009 9:35:54 PM Subject: Re: Hi a, Thanks for writing. I doubt that I'll be happy with any group home setting for PJ, but he is very disruptive and we have 4 younger children including another " special needs " child. By no less than a miracle I have PJ on a small waiver which funds some personal assistants and respite. The trouble is that getting a p.a. is very difficult. They have to be male and they have to be creative and active. I have the best luck with students from a small Christian college. Currently, I have a great guy that is on the swim team. But, he has to jump whenever the coach says so and that leaves me high and dry for long periods. If I can't use the time that I'm alloted I am in danger of losing my waiver funds. The funds are not enough for supported living and if I use them for the workshop there won't be any left for p.a. and respite. I'm just not sure if we even got on the big waiver (almost impossible anyway)there would be anything for PJ here. Recreation opportunities are limited. Jobs are not going to be creative and interesting enough to keep him happy. If he's bored or unhappy his behavior will not be managable. Thanks for sharing your experience. ____________ _________ _________ __ From: a <sewshawnayahoo (DOT) com> To: @yahoogrou ps.com Sent: Wednesday, December 31, 2008 3:14:05 AM Subject: Re: hello cathy!! welcome to the group! my oldest, nathan, with , add/hd, ocd, .... is 17 right now, will be turning 18 this coming summer. sniff. He will be in school until he is 20, as he turns 21 a couple weeks before school starts again so unable to go that year. We started nathan in a work program last year as the school was doing horrible with vocational training, and he loves it at the workshop dearly, making friends, talking more...not always words one likes to hear if you catch my drift, but in the least talking more. Ofcourse the school wont pay for it but we get funding through his waiver monies for it. goes for an hour mon-fri during school year, and by his senior year will be going half days. I havnt decided if he will go half days or full days yet this summer. We are in the process of doing all his 18yr old stuff, applying for guardianship, applying for his SSI, checking with insurance etc as his medcaid after our insurance is still pretty crappy, want to keep him covered as long as we can. One can really tell their kids are growing up with dont even get the child credit thing on your tax returns anymore, which happens if they turn 17 that year by the way for those of you with younger ones. I think services depend on what your plans are with pj. Does he receive any services yet? is he on any waiver programs? we got on these right away when nathan was a toddler. We dont plan on putting nathan in a group home currently. Someday if he really wants to move out then we will check into but for now hubby and i agree group homes are out. I dont know how they are in your state, but they often get a bad rap in iowa. And being a nurse for several years now, i have seen different places and types of cares, understand they mean well but things just arnet done how they need to be in my eyes, not from a lack of trying by any facility, but we just arnt even bother to put nathan in that equation. But remember this is what works for us, we are young parents, only 37, had nathan (our first child) when i was 20, so we have the energy for now. Each family's needs are different. I am not by any way saying no one should do group homes or facilities etc. it is what ever works out for the family. And I know all the parents on here do or would keep very close tabs on their children under care or otherwise. shawna http://sewshawna. blogspot. com ____________ _________ _________ __ To: @yahoogrou ps.com Sent: Saturday, December 27, 2008 8:14:14 AM Subject: <<Our eldest son,PJ, is turning 18 next week; he has Down Syndrome and some very difficult behavioral issues that are out of the norm for Down Syndrome.>> Hi, Everyone.... ..... welcome to the group. I have a 20 y/o, Gareth, with DS/Autism/OCD who use to fit this description very well!!! He also had the ODD label......oppositi onal defiance disorder. Anyways, because of his head banging and negative behaviors, we started him on Risperdal/SSRI drugs at age 10. Life turned completely around for us and we were finally able to 'reach and connect' with him. Has you son been evaluated for autism? As for services after school age (usually 21), I use to think Pa was pretty good but now I am not so sure. My son has numerous medical issues on top of everything else, and quite frankly, I don't picture him ever holding down a steady job. The waiting list for group homes is in the thousands. Sorry for the bummer news on this joyous holiday!!! Take care, Everyone. Margaret ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2009 Report Share Posted January 16, 2009 thanks for writing a. i haven't had time to check the list in a long time. it's good to know what's out there in other locations. cathy ________________________________ To: Sent: Tuesday, January 6, 2009 6:29:53 AM Subject: Re: thats pretty sad there arnt any activities for pj. Our town is fairly small only around 5000, in rural iowa, and they do a fair job for the disabled. they just built two more group home settings, they have several, and also have a good handful of private home settings where two to five disabled adults may live together and have a health aid or nurse around the clock when they are home, As for the workshop they are constantly upgrading and inventing new jobs, they got rid of can redemption a few years ago, and do document shredding among various other things for the places around the county. As they progress they get to learn towork at jobs around town with job coach, like at hy-vee or pizza hut or one of the factories depending on their skills and likes or dislikes. participates mostly in a group doing orders for that oriental trading (party supplies etc) and he is very good at it, has a buddy who waits for him all day, wont even work until nathan gets there, lol. We also have a place called " The Drop In Center " and its a hang out for the disabled, always a few health aids there, there are computers and game systmes, pool, foose ball, dvd's and tv, a couple goodie machines, but there is a fridge and small kitchenette too for a few who go there for respite, they have a monthly calender of events. card tournaments, like uno or skipbo etc, foose ball or pool tournaments. special meals, everyone meets on that day there for a meal like chillie etc. they go to the movies at least one a month, oh and usually have a movie day or two there also. things like that. goes there every wednesday afternoon and occasional other events. When nathan was little i was against these things, but seeing how nathan has really opened up and actually made friends with others who are disabled instead of the non disabled kids gave me a big reality check to my heart. These are the people nathan will mostly always be around, they dont judge him or make fun of him, they always talk to him, never ignore him, not afraid to touch him or be close to him, lol last friday I took the boys with me bowling leagues as no school until today, and there are 3 different teams of disabled women from the workshop/group homes, and they ALL know nathan, they were immediately there talking to him and seeing him smile and actually reply hisown answer was just lovely. later on that afternoon one of the guys from the workshop showed up and him and nathan played videogames, lol, nathan was mad i would only give him two dollars, he wanted " more quarters please " but i distracted him with a pop lol. I will pray for pj and hopes that you guys are able to find something halfway for him and your family. shawna http://sewshawna. blogspot. com ____________ _________ _________ __ From: Clarity <cdctreefarm@ yahoo.com> To: @yahoogrou ps.com Sent: Friday, January 2, 2009 9:35:54 PM Subject: Re: Hi a, Thanks for writing. I doubt that I'll be happy with any group home setting for PJ, but he is very disruptive and we have 4 younger children including another " special needs " child. By no less than a miracle I have PJ on a small waiver which funds some personal assistants and respite. The trouble is that getting a p.a. is very difficult. They have to be male and they have to be creative and active. I have the best luck with students from a small Christian college. Currently, I have a great guy that is on the swim team. But, he has to jump whenever the coach says so and that leaves me high and dry for long periods. If I can't use the time that I'm alloted I am in danger of losing my waiver funds. The funds are not enough for supported living and if I use them for the workshop there won't be any left for p.a. and respite. I'm just not sure if we even got on the big waiver (almost impossible anyway)there would be anything for PJ here. Recreation opportunities are limited. Jobs are not going to be creative and interesting enough to keep him happy. If he's bored or unhappy his behavior will not be managable. Thanks for sharing your experience. ____________ _________ _________ __ From: a <sewshawnayahoo (DOT) com> To: @yahoogrou ps.com Sent: Wednesday, December 31, 2008 3:14:05 AM Subject: Re: hello cathy!! welcome to the group! my oldest, nathan, with , add/hd, ocd, .... is 17 right now, will be turning 18 this coming summer. sniff. He will be in school until he is 20, as he turns 21 a couple weeks before school starts again so unable to go that year. We started nathan in a work program last year as the school was doing horrible with vocational training, and he loves it at the workshop dearly, making friends, talking more...not always words one likes to hear if you catch my drift, but in the least talking more. Ofcourse the school wont pay for it but we get funding through his waiver monies for it. goes for an hour mon-fri during school year, and by his senior year will be going half days. I havnt decided if he will go half days or full days yet this summer. We are in the process of doing all his 18yr old stuff, applying for guardianship, applying for his SSI, checking with insurance etc as his medcaid after our insurance is still pretty crappy, want to keep him covered as long as we can. One can really tell their kids are growing up with dont even get the child credit thing on your tax returns anymore, which happens if they turn 17 that year by the way for those of you with younger ones. I think services depend on what your plans are with pj. Does he receive any services yet? is he on any waiver programs? we got on these right away when nathan was a toddler. We dont plan on putting nathan in a group home currently. Someday if he really wants to move out then we will check into but for now hubby and i agree group homes are out. I dont know how they are in your state, but they often get a bad rap in iowa. And being a nurse for several years now, i have seen different places and types of cares, understand they mean well but things just arnet done how they need to be in my eyes, not from a lack of trying by any facility, but we just arnt even bother to put nathan in that equation. But remember this is what works for us, we are young parents, only 37, had nathan (our first child) when i was 20, so we have the energy for now. Each family's needs are different. I am not by any way saying no one should do group homes or facilities etc. it is what ever works out for the family. And I know all the parents on here do or would keep very close tabs on their children under care or otherwise. shawna http://sewshawna. blogspot. com ____________ _________ _________ __ To: @yahoogrou ps.com Sent: Saturday, December 27, 2008 8:14:14 AM Subject: <<Our eldest son,PJ, is turning 18 next week; he has Down Syndrome and some very difficult behavioral issues that are out of the norm for Down Syndrome.>> Hi, Everyone.... ..... welcome to the group. I have a 20 y/o, Gareth, with DS/Autism/OCD who use to fit this description very well!!! He also had the ODD label......oppositi onal defiance disorder. Anyways, because of his head banging and negative behaviors, we started him on Risperdal/SSRI drugs at age 10. Life turned completely around for us and we were finally able to 'reach and connect' with him. Has you son been evaluated for autism? As for services after school age (usually 21), I use to think Pa was pretty good but now I am not so sure. My son has numerous medical issues on top of everything else, and quite frankly, I don't picture him ever holding down a steady job. The waiting list for group homes is in the thousands. Sorry for the bummer news on this joyous holiday!!! Take care, Everyone. Margaret ************ **One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now. (http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco m00000025) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 always stares at my hair when I put it in a pony tail...I dunno whether he can't recognize me or whether it's the fact that pony tails dangle, lol. sure can recognize cartoon characters. He's recently decided that he will no longer wear Lightnin McQueen pull-ups, only Maters. Sigh, WHY must they put more than one design in each pack???? Every single one of my kids had a favorite... Sent from my iPhone <<I honestly think it took him 2 years to conceptually process that glasses in front of eyes are not wrong and that he didn't need to clear off their faces.>> Hi, Everyone.........I read an article, written by an autistic individual, who said that one of the hardest things for him to do EVERY day was recognizing people by their facial features. If his Mom or Dad changed their hair, beards, etc., he wouldn't recognize them till he heard their voices, and then, had to reprocess their new look. Perhaps that is why so many of our kids try to get the glasses off people's faces --- maybe they feel if they can get them off then they might recognize the person. Yes.....Gareth use to do it, too!!! Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 used to take everyone else's glasses off and put them on me. I couldn't figure it out until I finally realized that my older blue eyed daughter wears glasses. Well I have blue eyes and I think he was thinking that only blue eyes were supposed to have them. He would stare at my eyes closely then make a little approval noise and walk away. Terry <<I honestly think it took him 2 years to conceptually process that glasses in front of eyes are not wrong and that he didn't need to clear off their faces.>> Hi, Everyone.........I read an article, written by an autistic individual, who said that one of the hardest things for him to do EVERY day was recognizing people by their facial features. If his Mom or Dad changed their hair, beards, etc., he wouldn't recognize them till he heard their voices, and then, had to reprocess their new look. Perhaps that is why so many of our kids try to get the glasses off people's faces --- maybe they feel if they can get them off then they might recognize the person. Yes.....Gareth use to do it, too!!! Take care, Everyone. Margaret Quote Link to comment Share on other sites More sharing options...
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