Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Welcome Beverley It sounds like you have a very interesting job and are doing some really good work in enabling others to understand the wider implications of the public health agenda. I would like to add something to your comments on public health only being able to function effectively if it reclaims the vision that improving health starts with people, families and communities. In the development work I am doing with Trusts especially with health visitors and school nurses, I am clear that they can only deliver the described family cented puiblic health funcion if they are enabled to work with families and communities rather that the present 1:1 work across a wide area which results from GP attachment. I am aware that there is a contradiction in some of the policy with the public health/health visiting linked agenda moving practitoners into communites and the primary care/ GP linked policy seeing everyone being part an integrated primary care team. I am finding a number of chief executive and senior managers in PCT to be quite hung up on the integrated team agenda and failing to recognise the wider public health funtion as you describe. I know there is an issue about the power of GPS and like you am working hard to get them to see the wider agenda and using the policy and the HV and SN development packs to support my arguments. for me there is some movement but I know it is really hard for those in practice when I say one thing and the powers that be the opposite. There seems to be this false assumption that General Practice has got it right and when I say things like " geneal practice and primary care will look very different in five years time " generally again that is a diffciult concept for people. There is so much work to do to help people live healthy lives and I to see primary care nurses and health vistors as a key. However they need to be allowed to stand on their own and not feel beholden to general practice - the realtionships built up over the years will survive and the good practcies will like the HVs will ensure it works. After all it is the client and the community who should be central to this not the practioners. Regards Margaret New member > Hello all. > > My name is Beverley and I am employed as Public Health Nurse at Rotherham HA (to be Rotherham PCT from April). > > My background is a midwife, but I have been working in management, training and commissioning for some time now. I worked for Sheffield Health Authority as a health promotion specialist, eventually doing a lot of children's and nursing/midwifery policy work (more than the health promotion). I went on the Trent non-medical public health specialist training, worked as D/Dir Health promotion here before getting the PHN post. I have a post-grad dip in HP, adult ed qualification and am almost completed my Masters in Public Health. I am currently on the National Public Health Leadership programme. > > I would describe myself as a primary care focused public health specialist. My post involves developing and leading the public health nursing function and I have done quite a bit of work this year on influencing my medical colleagues about the necessity of developing a joined up public health workforce with public health practitioners as a valued and integrated part and partnership key to reducing inequalities and improving health. An uphill struggle initially, but I am winning the argument. I am passionate that public health can only function effectively if it reclaims the vision that improving health starts with people, families and communities (rather than statistics and policy). I see primary care and nurses as key to this. Health visitors were central to public health and must be again, if public health is going to turn itself round from the very sterile route it took. > > Like to here from other who are in a similar role (or rant along similar lines!). > > If there are plans to get this rolling study day/conference programme going I would be very happy to participate. I have contacted colleagues in the region to see if they are interested in hosting something here. > > All the best. > > Bev > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 In a message dated 4/14/2002 4:08:03 PM Eastern Daylight Time, egg_philosopher@... writes: > So if I can > provide any help, or if one just wants to vent about the system, or > if anyone has any ideas on how I can do my job better, I would love > to hear them. Hi Devrey, Welcome to the group. We all need ideas on dealing with behaviors! You have a tough job. Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Welcome , you shall find a few of us here. I have found these groups very valuable. I get like 50 emails a day from different Autistic groups that i am a member on. You sure do learn alot. i have 3 kids, the middle one, Hannah will be 8 in October, and she is classed as HFA, High functioning Autistic, she has come along way. She is in regular school with a government funded teachers aide for 2 hours a day, she will have her bad days too, but things are ok i guess. socially, still a very long way to go, and speech wise as well, cognitive, is still way behind. But she has learned to read and write, and that is such a releif, as i really wanted her to be able to do those things, as i beleive this will open up so much for her in the future. We are in australia, the school you have enrolled your daughter in sounds fantastic.........don;t think there is anything that resembles that over here. Hope to hear more from you. Cheryl S New Member Hello. My name is . I have a 7 (almost not quite 8 lol) year old daughter w/asperger's syndrome. She is an absolute angel. People ask how I manage to live with an autistic child. I simply smile and say, " The fact that she is alive, healthy *now*, learning and growing in so many ways...she's a blessing in my life...not a chore or a challenge. " You see, Lily was born in complete cardiac failure. She wasn't blue, she was grey going black. They brought her back but a week later was in another heart failure. She had this heart syndrome (not found till the second failure) that shouldn't have caused her such problems. Most people that have it never know they have it until routine ekg's later in life (40's and 50's)...but it was making her weak and tired all the time. The syndrome was corrected in a complex procedure at Duke University when she was 18 mos old. There I was finally validated when doctors said YES she also has apnea secondary to gastric reflux...she wasn't breathing hardly at all when she slept...I had been telling doctors this since her birth..but what do WE know, right? :-) That's under control now too. She also has vaso vagal syncope. It's something to do w/adrenaline rushes/blood pressure. Not too serious. Just have to be sure she is kept hydrated and give her open season on the salt shaker...lol. Soooo, you see, it took many doctors sorting thru SOOO many problems that she wasn't diagnosed w/autism till she was 6. Tho *I* knew she was dealing w/something more serious than being " behind because her body was fighting all these other conditions...let her be, she'll catch up... " . You don't " catch up " exactly with autism, do you? (rolling my eyes). Thankfully, my beautiful little girl is now the healthiest of my family! I just moved four months ago and enrolled her in a fantastic school that has a self-contained classroom for high functioning autistic kids. She is such a different child now!! The teachers are amazing! The kids in the " typical " classes are so great with her!! We have our bad days, of course...if it rains, she cries for her " sun to come back out " ...thinks everyone is being mean if they're simply joking around..you know, the whole LITERAL thing autistic kids have issues with. But overall, life has gotten easier w/the actual diagnosis. She'll be going to a daycamp this summer to keep her social skills going..it's run by the autism society. She's on a waiting list for a week long camp for high functioning kids. (I almost hope she won't get in...selfish me!! lol). I've rambled on enuf. It's just nice to find someplace to " meet " other parents who KNOW what it is I deal with on a daily basis..and KNOW the blessings we've been given with our special child. I've learned compassion and determination on a level I never knew I had! God bless! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hey Charlyne, Thank you so much for the welcome. I was a bit unsure of how the group would take a behavior specialist joining up, but my intentions are good. I enjoy my job but the politics that are invovled make it hard to make a difference in the field. I do think that all of the parents have a bit of tougher job than I do. I want to let you all know that I have been reading the e-mails and I think all of you are doing a wonderful job. Unfortunately most of the people I work with have come from institutions that abused and mistreated them for most of their lives. My heart breaks when I think of all of the things that have been done to them and I can understand why their behaviors occur. Here is a question for all of you. I need to write a protocal for one of the people I work with on sleeping. He usually stays up late and falls asleep on the couch. Staff at this home are having a hard time getting him to his bed and due to the regulations we follow, we cannot make him go to his bed. Are there any ideas for helping him feel more comfortable sleeping in his own bed? Thanks, Devrey > > Hi Devrey, > Welcome to the group. We all need ideas on dealing > with behaviors! You have a > tough job. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hey Charlyne, Thank you so much for the welcome. I was a bit unsure of how the group would take a behavior specialist joining up, but my intentions are good. I enjoy my job but the politics that are invovled make it hard to make a difference in the field. I do think that all of the parents have a bit of tougher job than I do. I want to let you all know that I have been reading the e-mails and I think all of you are doing a wonderful job. Unfortunately most of the people I work with have come from institutions that abused and mistreated them for most of their lives. My heart breaks when I think of all of the things that have been done to them and I can understand why their behaviors occur. Here is a question for all of you. I need to write a protocal for one of the people I work with on sleeping. He usually stays up late and falls asleep on the couch. Staff at this home are having a hard time getting him to his bed and due to the regulations we follow, we cannot make him go to his bed. Are there any ideas for helping him feel more comfortable sleeping in his own bed? Thanks, Devrey > > Hi Devrey, > Welcome to the group. We all need ideas on dealing > with behaviors! You have a > tough job. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Dervey: What makes him want to sleep on the couch? Is there a tv there? What is he doing when he falls asleep? If he's watching TV, you might use a tv near bed one way to try. YOu can also write a social script with photos about the bed time routine. As you know , you will want some really enticing reward for any attempt to sleep in his bed to start. Does he follow a schedule? Is the schedule visually available? Our son used to fall asleep down stairs on the couch too. It has taken about a year,b ut now he prefers to go to sleep upstairs in his bed. But someone has to BE there when he falls asleep. Usually we end up modeling the expected behavior (read: we fall asleep on the floor next to the bed). Keep us posted--and welcome. I've been really busy and didn't see your first post. All we ask of nonparent professionals is to respect that we're dealing with our families and forgive us if we rant and rave. You sound perfectly able to do that. take care, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Dervey: What makes him want to sleep on the couch? Is there a tv there? What is he doing when he falls asleep? If he's watching TV, you might use a tv near bed one way to try. YOu can also write a social script with photos about the bed time routine. As you know , you will want some really enticing reward for any attempt to sleep in his bed to start. Does he follow a schedule? Is the schedule visually available? Our son used to fall asleep down stairs on the couch too. It has taken about a year,b ut now he prefers to go to sleep upstairs in his bed. But someone has to BE there when he falls asleep. Usually we end up modeling the expected behavior (read: we fall asleep on the floor next to the bed). Keep us posted--and welcome. I've been really busy and didn't see your first post. All we ask of nonparent professionals is to respect that we're dealing with our families and forgive us if we rant and rave. You sound perfectly able to do that. take care, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hi Welcome to the list! My name is Tracey and I have two daughters. Our oldest is Coral and she is 11 (12 in July) and our youngest is Skylar age 91/2. Skylar was diagnosed as autistic at the age of 3. She attends a regular class with a full time Educational Assistant (whom we all adore). She is doing great and we have wonderful services where I live, even though it is a small town Your daughter's school sounds wonderful and so does your daughter. Glad to have you with us. Tracey Lilybugs wrote: > Hello. My name is . I have a 7 (almost not quite 8 lol) year > old daughter w/asperger's syndrome. She is an absolute angel. > People ask how I manage to live with an autistic child. I simply > smile and say, " The fact that she is alive, healthy *now*, learning > and growing in so many ways...she's a blessing in my life...not a > chore or a challenge. " You see, Lily was born in complete cardiac > failure. She wasn't blue, she was grey going black. They brought > her back but a week later was in another heart failure. She had > this heart syndrome (not found till the second failure) that > shouldn't have caused her such problems. Most people that have it > never know they have it until routine ekg's later in life (40's and > 50's)...but it was making her weak and tired all the time. The > syndrome was corrected in a complex procedure at Duke University > when she was 18 mos old. There I was finally validated when doctors > said YES she also has apnea secondary to gastric reflux...she wasn't > breathing hardly at all when she slept...I had been telling doctors > this since her birth..but what do WE know, right? :-) That's under > control now too. She also has vaso vagal syncope. It's something > to do w/adrenaline rushes/blood pressure. Not too serious. Just > have to be sure she is kept hydrated and give her open season on the > salt shaker...lol. Soooo, you see, it took many doctors sorting > thru SOOO many problems that she wasn't diagnosed w/autism till she > was 6. Tho *I* knew she was dealing w/something more serious than > being " behind because her body was fighting all these other > conditions...let her be, she'll catch up... " . You don't " catch up " > exactly with autism, do you? (rolling my eyes). Thankfully, my > beautiful little girl is now the healthiest of my family! I just > moved four months ago and enrolled her in a fantastic school that > has a self-contained classroom for high functioning autistic kids. > She is such a different child now!! The teachers are amazing! The > kids in the " typical " classes are so great with her!! We have our > bad days, of course...if it rains, she cries for her " sun to come > back out " ...thinks everyone is being mean if they're simply joking > around..you know, the whole LITERAL thing autistic kids have issues > with. But overall, life has gotten easier w/the actual diagnosis. > She'll be going to a daycamp this summer to keep her social skills > going..it's run by the autism society. She's on a waiting list for > a week long camp for high functioning kids. (I almost hope she won't > get in...selfish me!! lol). > I've rambled on enuf. It's just nice to find someplace to " meet " > other parents who KNOW what it is I deal with on a daily basis..and > KNOW the blessings we've been given with our special child. I've > learned compassion and determination on a level I never knew I had! > God bless! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 devry, is there anyway to make his room more inviting, maybe let him have a tv in his room, annd/or exchange a decent size couch for his bed in his room. what i do if my son natha chooses tv for his reward for getting ready for bed is iether get a 30min. video on for him, or set the tv's timer for 30 minutes---and most tvs start out at 120minutes i do beleive, one could slowly shorten the tv time. Seeping is always a big issues with many of our kids, there is a great book out there something like " Sleeping Better " " A guide for parents of disabled children " cant remember who its by, barrowed it awhile back from the University of Iowa, Disability Resource Library, they have an online thing too where they will send you books and you send them back when can or if they need them back. I will try to find the web address for you. shawna. Re: new member Hey Charlyne, Thank you so much for the welcome. I was a bit unsure of how the group would take a behavior specialist joining up, but my intentions are good. I enjoy my job but the politics that are invovled make it hard to make a difference in the field. I do think that all of the parents have a bit of tougher job than I do. I want to let you all know that I have been reading the e-mails and I think all of you are doing a wonderful job. Unfortunately most of the people I work with have come from institutions that abused and mistreated them for most of their lives. My heart breaks when I think of all of the things that have been done to them and I can understand why their behaviors occur. Here is a question for all of you. I need to write a protocal for one of the people I work with on sleeping. He usually stays up late and falls asleep on the couch. Staff at this home are having a hard time getting him to his bed and due to the regulations we follow, we cannot make him go to his bed. Are there any ideas for helping him feel more comfortable sleeping in his own bed? Thanks, Devrey > > Hi Devrey, > Welcome to the group. We all need ideas on dealing > with behaviors! You have a > tough job. > Charlyne > Mom to Zeb 9 DS/OCD ? > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 oh yaa, im glad there are many of us here to hlep, nathan uses pic schedules too, this hleps remind him wht to do, and for his reward when its time to start his nite time routine bath and all, and he often will refuse if we say ok time to go take your bath etc etc, but if we ask, do you want to watch.....(a certain show or fav video-eg. scooby video) or play a game? he will choose, and then we say ok hurry go take your bath and then ......what everhe chose, it works very well, we got this from his biobehavior team at UIHC. llots of luck shawna Re: new member Dervey: What makes him want to sleep on the couch? Is there a tv there? What is he doing when he falls asleep? If he's watching TV, you might use a tv near bed one way to try. YOu can also write a social script with photos about the bed time routine. As you know , you will want some really enticing reward for any attempt to sleep in his bed to start. Does he follow a schedule? Is the schedule visually available? Our son used to fall asleep down stairs on the couch too. It has taken about a year,b ut now he prefers to go to sleep upstairs in his bed. But someone has to BE there when he falls asleep. Usually we end up modeling the expected behavior (read: we fall asleep on the floor next to the bed). Keep us posted--and welcome. I've been really busy and didn't see your first post. All we ask of nonparent professionals is to respect that we're dealing with our families and forgive us if we rant and rave. You sound perfectly able to do that. take care, Joan -------------------------------------------------- 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. -------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 In a message dated 4/21/02 7:50:13 PM Central Daylight Time, writes: > Even though those that I work with are not my children > there is a high level of attatchment that I deal with > on a daily basis. There are a lot of people who have > told me not to get attatched, but I don't know how to > work in this field without caring about those that I > work with. > Devrey, Yes, be careful or you may bring one home with you like I did. LOL!!! It definitely makes life interesting. I was very close to some of my clients. Goodness, I was involved in raising two of them for 8 years of their childhoods. I still miss them. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 a, That is a great idea. I am not sure if he has a T.V. in his room, I don't think so. But I should look into making his room a fun place to spend time. For a long time while he was sick he would not come out of his room and now that he is feeling better he doesn't want to go in. He has also started other behaviors since feeling better such as not wanting to get out of the van after a ride and at times he will smear feces. I am not sure why the feces smearing began but I have to come up with a program or protocal for the staff to follow when he does. Thanks for the sleeping ideas I will try those. Thanks a, Devrey --- greenpak <greenpak@...> wrote: > devry, is there anyway to make his room more > inviting, maybe let him have a tv in his room, > annd/or exchange a decent size couch for his bed in > his room. what i do if my son natha chooses tv for > his reward for getting ready for bed is iether get a > 30min. video on for him, or set the tv's timer for > 30 minutes---and most tvs start out at 120minutes i > do beleive, one could slowly shorten the tv time. > Seeping is always a big issues with many of our > kids, there is a great book out there something like > " Sleeping Better " " A guide for parents of disabled > children " cant remember who its by, barrowed it > awhile back from the University of Iowa, Disability > Resource Library, they have an online thing too > where they will send you books and you send them > back when can or if they need them back. I will try > to find the web address for you. shawna. > Re: new member > > > Hey Charlyne, > Thank you so much for the welcome. I was a bit > unsure of how the group would take a behavior > specialist joining up, but my intentions are good. > I > enjoy my job but the politics that are invovled > make > it hard to make a difference in the field. > I do think that all of the parents have a bit > of > tougher job than I do. I want to let you all know > that > I have been reading the e-mails and I think all of > you > are doing a wonderful job. Unfortunately most of > the > people I work with have come from institutions > that > abused and mistreated them for most of their > lives. My > heart breaks when I think of all of the things > that > have been done to them and I can understand why > their > behaviors occur. > Here is a question for all of you. I need to > write > a protocal for one of the people I work with on > sleeping. He usually stays up late and falls > asleep on > the couch. Staff at this home are having a hard > time > getting him to his bed and due to the regulations > we > follow, we cannot make him go to his bed. Are > there > any ideas for helping him feel more comfortable > sleeping in his own bed? > > Thanks, > Devrey > > > > > Hi Devrey, > > Welcome to the group. We all need ideas on > dealing > > with behaviors! You have a > > tough job. > > Charlyne > > Mom to Zeb 9 DS/OCD ? > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Dear Joan, Thanks for the advice with the sleeping schedule and routines. I appreciate it. It is so nice to get feed-back from people who live and care about those with Autism and disabilities. I have a great respect for parents who care for children with disabilities. Even though those that I work with are not my children there is a high level of attatchment that I deal with on a daily basis. There are a lot of people who have told me not to get attatched, but I don't know how to work in this field without caring about those that I work with. I really enjoy reading everyones stories and trials and tribulations. It gives me a lot of great ideas on how to work with the people I serve. So feel free to rant and rave because I am always here to listen. Especially if you have issue with the rules and regulations since I have to deal with those every day. Thanks Joan, Devrey --- Joan Guthrie Medlen <joan@...> wrote: > Dervey: > > What makes him want to sleep on the couch? Is there > a tv there? What is he > doing when he falls asleep? > > If he's watching TV, you might use a tv near bed one > way to try. > > YOu can also write a social script with photos about > the bed time routine. > As you know , you will want some really enticing > reward for any attempt to > sleep in his bed to start. > > Does he follow a schedule? Is the schedule visually > available? > > Our son used to fall asleep down stairs on the couch > too. It has taken > about a year,b ut now he prefers to go to sleep > upstairs in his bed. But > someone has to BE there when he falls asleep. > Usually we end up modeling > the expected behavior (read: we fall asleep on the > floor next to the bed). > > Keep us posted--and welcome. I've been really busy > and didn't see your > first post. All we ask of nonparent professionals is > to respect that we're > dealing with our families and forgive us if we rant > and rave. You sound > perfectly able to do that. > > take care, > Joan > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Karyn, There have been times when this thought has occured. I actually almost stopped working in this field a couple of years ago. I was working in a group home at the time and one of the men that I cared for past away while I was with him. He had cancer and was not diagnosed with it until too late. We knew that he was going to pass away so I spent the evening with him and he died very peacefully. It was alot to handle and did break my to heart to the point that I was questioning whether or not I wanted to continue working in this field. I'm glad I am still working with people with disabilities. It is a fun job. Keeps you on your toes (ha). Devrey > > > > Devrey, > Yes, be careful or you may bring one home with you > like I did. LOL!!! It > definitely makes life interesting. I was very close > to some of my clients. > Goodness, I was involved in raising two of them for > 8 years of their > childhoods. I still miss them. > > Karyn > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 We are glad there are caring good people out there like Karyn and Devrey, I know how thankful is too, Dawn, s mom Re: new member In a message dated 4/21/02 7:50:13 PM Central Daylight Time, writes: > Even though those that I work with are not my children > there is a high level of attatchment that I deal with > on a daily basis. There are a lot of people who have > told me not to get attatched, but I don't know how to > work in this field without caring about those that I > work with. > Devrey, Yes, be careful or you may bring one home with you like I did. LOL!!! It definitely makes life interesting. I was very close to some of my clients. Goodness, I was involved in raising two of them for 8 years of their childhoods. I still miss them. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 uuugh nathan use to finger paint feces too, that seems ages ago, lets see, we just kept telling him how gross it was and making him hlep clean it up and shower himself etc, it ws hand over hand for a while but then nathan got the hang of it and started figuring out its easier to use the toilet then to have to wash self and everything else, ALSO, he suffered horribly from constipation this could have been a major factor once we found the right med ( nathanis Miralax) to releive his constipation and the pain and uncomfortableness that comes with this he became potty trained and stopped the finger painting too. hope this helps. shawna. Re: new member > > > Hey Charlyne, > Thank you so much for the welcome. I was a bit > unsure of how the group would take a behavior > specialist joining up, but my intentions are good. > I > enjoy my job but the politics that are invovled > make > it hard to make a difference in the field. > I do think that all of the parents have a bit > of > tougher job than I do. I want to let you all know > that > I have been reading the e-mails and I think all of > you > are doing a wonderful job. Unfortunately most of > the > people I work with have come from institutions > that > abused and mistreated them for most of their > lives. My > heart breaks when I think of all of the things > that > have been done to them and I can understand why > their > behaviors occur. > Here is a question for all of you. I need to > write > a protocal for one of the people I work with on > sleeping. He usually stays up late and falls > asleep on > the couch. Staff at this home are having a hard > time > getting him to his bed and due to the regulations > we > follow, we cannot make him go to his bed. Are > there > any ideas for helping him feel more comfortable > sleeping in his own bed? > > Thanks, > Devrey > > > > > Hi Devrey, > > Welcome to the group. We all need ideas on > dealing > > with behaviors! You have a > > tough job. > > Charlyne > > Mom to Zeb 9 DS/OCD ? > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 Hey a, Thanks for the info. The company has protocol that staes that we cannot tell the person that it is gross or have any negative reaction because that might inadvertantly reinforce the behavior. So we go through the process of having to approach and re-approach. I will definately check out whether or not he has constipation. This is a great idea and hopefully will help solve the problem. I can see that it is the beginning of a long process. I guess you just take it day by day and hope that staff are running the programs consistantly. I do appreciate the information, every little bit helps. Thanks Again a, Devrey --- greenpak <greenpak@...> wrote: > uuugh nathan use to finger paint feces too, that > seems ages ago, lets see, we just kept telling him > how gross it was and making him hlep clean it up and > shower himself etc, it ws hand over hand for a while > but then nathan got the hang of it and started > figuring out its easier to use the toilet then to > have to wash self and everything else, ALSO, he > suffered horribly from constipation this could have > been a major factor once we found the right med ( > nathanis Miralax) to releive his constipation and > the pain and uncomfortableness that comes with this > he became potty trained and stopped the finger > painting too. hope this helps. shawna. > Re: new member > > > > > > Hey Charlyne, > > Thank you so much for the welcome. I was a > bit > > unsure of how the group would take a behavior > > specialist joining up, but my intentions are > good. > > I > > enjoy my job but the politics that are > invovled > > make > > it hard to make a difference in the field. > > I do think that all of the parents have a > bit > > of > > tougher job than I do. I want to let you all > know > > that > > I have been reading the e-mails and I think > all of > > you > > are doing a wonderful job. Unfortunately most > of > > the > > people I work with have come from institutions > > that > > abused and mistreated them for most of their > > lives. My > > heart breaks when I think of all of the things > > that > > have been done to them and I can understand > why > > their > > behaviors occur. > > Here is a question for all of you. I need > to > > write > > a protocal for one of the people I work with > on > > sleeping. He usually stays up late and falls > > asleep on > > the couch. Staff at this home are having a > hard > > time > > getting him to his bed and due to the > regulations > > we > > follow, we cannot make him go to his bed. Are > > there > > any ideas for helping him feel more > comfortable > > sleeping in his own bed? > > > > Thanks, > > Devrey > > > > > > > > Hi Devrey, > > > Welcome to the group. We all need ideas on > > dealing > > > with behaviors! You have a > > > tough job. > > > Charlyne > > > Mom to Zeb 9 DS/OCD ? > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Hi, , I am the grandmother of a low functioning 9 year-old grandson. I have been in charge of his ABA program for 6 years. Karac is in public school in a class for special need kids. He has some periodic attacks of aggression. Seemingly, without provocation he will pull another child's hair. Recently I observed that these attacks seemed to occur when he was constipated. It probably sounds crazy, but I started giving him a Granny apple to eat every day which regulated his bowels, and he hasn't been aggressive since. Maybe it is just a coincidence. These precious kids are so unpredictable. I would love to know more about your son. Feel free to email me directly. God bless, Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Hi Pat K~~ It's Rose from the old autism lists. Welcome and hope your grandson is doing well. I'm going to try that tip with my son. All the best~~ Rose Re: new member Hi, , I am the grandmother of a low functioning 9 year-old grandson. I have been in charge of his ABA program for 6 years. Karac is in public school in a class for special need kids. He has some periodic attacks of aggression. Seemingly, without provocation he will pull another child's hair. Recently I observed that these attacks seemed to occur when he was constipated. It probably sounds crazy, but I started giving him a Granny apple to eat every day which regulated his bowels, and he hasn't been aggressive since. Maybe it is just a coincidence. These precious kids are so unpredictable. I would love to know more about your son. Feel free to email me directly. God bless, Pat K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Hi , My name is Jayne, and I am also a new member to this list. I have a 3 year old girl who is on the spectrum and also has underlying mitochondrial disease. I also have a 5 year old and two teenage sons. I look forward to talking with everyone here. Jayne Nelsen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 - welcome to the list! You news about your daughter is wonderful to hear. Are you familiar with Dr Kane of BodyBio? I am Deanna, mom to Bridget 6, ASD (and I believe, recovering) and 3 and NoT. Bridget has been gfcf for 2 years, we have alternately watched sugars, preservatives, dyes, and phenols. She has been on pro-biotics and I am considering S. Boullardi at the moment. She takes a multi vite, calcium citrate supplement, Coromega (EFA's) and vitamin E. We've also done CLO with success, CoQ10, and TMG- whcih produced a rash so we stopped. She is also currently taking enzymes from HNI; pep and zprime. I am very into diet and supplements that work. You have a lot to offer everyone on this list and I hope we can offer you friendship and support as well! Welcome again, Deanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Jayne- welcome to the list. It certainly seems as if you have your plate full! Could you share a little more about your daughters mitochondrial disease? Does she not synthesize proteins or? Glad to have you with us, Deanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Glad your aboard. Wished you were locally for me! I have 3 biological children two autistic. My oldest girl and my youngest son autistic. charlene -- New member Hello, it took a while to get an acceptance to this list. I feel privileged. I am the parent of one of those rare recovered autists. A girl who is now 18 and who just had a marriage proposal. She has come a long way from the 5 and a half year old who was brought screeming and self-abusing into my home 12 years ago diagnosed with severe MR, low muscle tone, epilepsy and autism with hyperactivity. It has not been an easy journey. I have higher education degress in Food Science and Nutrition as well as a MA-TFM ( an alternative to ABA Lovaas method). I have worked also as a teacher in the UK in a model school for young adult autists age 16 to 25 for 1 year, an insitution with adult autists who had lived institutionalized since childhood and who were finally being transitioned to community living most around age 40 and also as a teacher in a private school for autists ages 9 to 18. Independantly I have provided nutritional consultation for just over 2000 people (mostly children) with autism. Approximately 10 percent have gotten results like my adopted daughter (declassification or symtpom free). So, I am biased to the nutritional aspects for treating symptoms as opposed to behaviors. (thanks for letting me join) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Sure Deanna, My daughter, Carly (5 yrs old NT) was dx'd at 3 days old with seizure disorder and apnea. She began having seizures at birth, but they gradually progressed into grand mal seizures. I had them as a child too. At about 10 months old she had a skin biopsy and was found to have Complex II deficiency of the electron transport chain. She had low muscle tone and seizures that were under control with medication, but we really didn't know what to expect as far as her development. She was right on time with everything (actually very advanced). Her sister came along eighteen months later and started out basically the same way. Seizures at 3 days old and was assumed to have the same dx. However, Madelyn (3 yrs old now) never hit any milestones on time. I should mention that she was not on the same meds as Carly either. Carly was on phenobarb, dilantin, tegretol, and caffiene (for apnea). Maddy was just on phenobarb and then they added tegretol for ongoing tremors. I knew early on that Maddy was different. She had a weak suck, and seemed to get angry over strange things at a very young age. She craved water and would scream bloody murder when I removed her from her warm bath. She was very colicky and later I discovered that she was having an extreme allergic reaction to dairy. She was gfcf for a year and began walking and talking within that year (at 2 yrs old). She's actually 3 and a half now. We have her back on wheat, but off oats, dairy and some soy products...She is doing so well right now, but we are still awaiting her organic acids results to determine if she actually has the same mito disorder as her sister. Docs at UCLA told my husband and I this year that they didn't believe either one had mito disorder and the test must have been flawed, so we decided to retest maddy while she went under to have a benign cyst removed from her back. The docs were amazed that they found something, and now we are narrowing down what exactly it is. It's between something called SCAD and Complex II. If you would like to read more about mito disease, go to www.umdf.org. Carly also suffered from Kawasaki's disease in August of 2000. I like to spread awareness to parents about this disease as well since it is the number one cause of acquired heart disease in children. To learn more about KD, go to www.kdfoundation.org. Sorry for the super long post. Feel free to ask me anything! And thanks for the warm welcome:) Jayne Nelsen California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Hi Welcome to the group. What great news about your daughter. My name is Tracey and I have two daughters our oldest Coral will be 12 next month and our youngest is Skylar, age 91/2, and she was diagnosed with autism at the age of 3.It is nice to hav you with us. Thanks for sharing your daughters success with us. Tracey sojmed wrote: > Hello, it took a while to get an acceptance to this list. I feel > privileged. I am the parent of one of those rare recovered autists. A > girl who is now 18 and who just had a marriage proposal. She has come > a long way from the 5 and a half year old who was brought screeming > and self-abusing into my home 12 years ago diagnosed with severe MR, > low muscle tone, epilepsy and autism with hyperactivity. It has not > been an easy journey. I have higher education degress in Food Science > and Nutrition as well as a MA-TFM ( an alternative to ABA Lovaas > method). I have worked also as a teacher in the UK in a model school > for young adult autists age 16 to 25 for 1 year, an insitution with > adult autists who had lived institutionalized since childhood and who > were finally being transitioned to community living most around age 40 > > and also as a teacher in a private school for autists ages 9 to 18. > Independantly I have provided nutritional consultation for just over > 2000 people (mostly children) with autism. Approximately 10 percent > have gotten results like my adopted daughter (declassification or > symtpom free). So, I am biased to the nutritional aspects for treating > > symptoms as opposed to behaviors. > (thanks for letting me join) > > > Quote Link to comment Share on other sites More sharing options...
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