Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Hi , We have been working for years with on potty training with not much success. I think that part of the problem was that we (teachers, aides, family members, and respite workers) weren't all doing the same thing. This past year, we used potty training skills and sensory integration as a big part of 's IEP. (His IEPs typically target life skills as opposed to academics) He was to go to the bathroom every 2 hours at school then wash his hands, comb his hair, put on lotion, etc. Obviously, he has a 1:1 aide...this is all very time consuming. At home, I started to do exactly what they were doing at school and showed everyone here, including the respite workers, what we were doing. After a few months, started to be dry in-between toileting and he was peeing regularly in the toilet! Unfortunately, in January, he had hip surgery and was in a body cast for several months. He still isn't walking and we have not been able to go back to that routine as yet. People told us that WE were the ones that were trained because we were taking him to the bathroom every 2 hours. Whatever....it was starting to work and that's what counts as far as I'm concerned! We used Overnight (xtra large) during that process. Now we are back to med. adult diapers. As soon as possible, we will try again! Good luck! Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 In a message dated 5/16/01 11:02:17 AM Eastern Daylight Time, tollytex@... writes: > We're > getting too big for diapers and pull ups don't hold enough. We are > using good nights right now. , We use the goodnights too. They are delivered each month by a medical supply company, paid for by Medical Assistance. Maddie is 7, DS/asd, and weighs 46 pounds. We also, could never get her to sit on a toilet. But her aide at school has her not only sitting, but she's made 2 deposits so far. Carol says she's just persistent and rewarded Maddie for sitting. While Maddie hasn't made any deposits at home, she now sits on the toilet for me. I feel this is a BIG step!!!! Honestly, before I didn't know how we were ever going to get her to sit. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 We are going to attempt it starting next month. Too much going on this month and I want to be able ot focus on it. Has anyone heard of those (gosh I dont know what theyre called)things that beep or something when they wet their underwear? I've been trying to find one with no luck. Any experiences w it and if so what were the results? Thanks. sandy mom to Gabby (4, DS) and Adam (1) >From: tollytex@... >Reply- > >Subject: thank you to all >Date: Wed, 16 May 2001 14:51:12 -0000 > >I wanted to thank all of you who responded to my e-mail. WOW there's >a lot of you. I'm glad. I'm so glad I finally have a place to ask >questions and there are people who can repond instead of " we'll have >to wait and see " or " will do it when he's ready " How >frustrating. Anyway, you all were very supportive and helpful. I >now need to get my butt in gear and do something with all of this. I >will start with the question that has been hanging over me for a >while. POTTY TRAINING!!!! When and How? He likes to flush >especially toilet paper, rolls and rolls. My husband wonders why I >buy so much. He just doen't have the attention span to sit for more >than 2 seconds. His teachers tried this year, but said that he >doesn't have a schedule for it. She was putting him on every hour, >but wouldn't go and then right after you put a new diaper on... Our >biggest problem with this is that even as a baby, could care >less that he is soaking wet. He'd run around all day with a dripping >wet diaper soak through his pants and shirt and not care at all. >I've tried everything I've read, but I'm wondering if there's >something else or if it's too early. The other boy in his class that >has Down syndrome, learned in a week using the same method they were >trying on . Let me know if you have any suggestions. We're >getting too big for diapers and pull ups don't hold enough. We are >using good nights right now. > >Thank you > Tollefson >Mother of (6)DS-ASD/ADHD and Elisha 4 1/2 months > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 In Texas, we don't have Medical Assistance. Believe me this is one of my many battles. We had it in WI before we moved here. Texas doesn't have state income tax. I'm trying to get reeducated on the government for this one. So many battles so little time. I will have to check with my insurance company to see if they will cover it. How did you get it delivered? Was this through a medical supplier or the company directly? is also 46 pounds. I'm anxious to get him toilet trained but I'm so used to our on the go lifestyle. We have so many places we go, it's going to be hard when it's stop for potty breaks. Oh well, it'll be cheaper!!! Thanks, Re: thank you to all > In a message dated 5/16/01 11:02:17 AM Eastern Daylight Time, > tollytex@... writes: > > > > We're > > getting too big for diapers and pull ups don't hold enough. We are > > using good nights right now. > > , > We use the goodnights too. They are delivered each month by a medical > supply company, paid for by Medical Assistance. Maddie is 7, DS/asd, and > weighs 46 pounds. We also, could never get her to sit on a toilet. But > her aide at school has her not only sitting, but she's made 2 deposits so > far. Carol says she's just persistent and rewarded Maddie for sitting. > While Maddie hasn't made any deposits at home, she now sits on the toilet for > me. I feel this is a BIG step!!!! Honestly, before I didn't know how we > were ever going to get her to sit. > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 In Texas, we don't have Medical Assistance. Believe me this is one of my many battles. We had it in WI before we moved here. Texas doesn't have state income tax. I'm trying to get reeducated on the government for this one. So many battles so little time. I will have to check with my insurance company to see if they will cover it. How did you get it delivered? Was this through a medical supplier or the company directly? is also 46 pounds. I'm anxious to get him toilet trained but I'm so used to our on the go lifestyle. We have so many places we go, it's going to be hard when it's stop for potty breaks. Oh well, it'll be cheaper!!! Thanks, Re: thank you to all > In a message dated 5/16/01 11:02:17 AM Eastern Daylight Time, > tollytex@... writes: > > > > We're > > getting too big for diapers and pull ups don't hold enough. We are > > using good nights right now. > > , > We use the goodnights too. They are delivered each month by a medical > supply company, paid for by Medical Assistance. Maddie is 7, DS/asd, and > weighs 46 pounds. We also, could never get her to sit on a toilet. But > her aide at school has her not only sitting, but she's made 2 deposits so > far. Carol says she's just persistent and rewarded Maddie for sitting. > While Maddie hasn't made any deposits at home, she now sits on the toilet for > me. I feel this is a BIG step!!!! Honestly, before I didn't know how we > were ever going to get her to sit. > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 Weve been using those good nights for years too, we just go to our pharmacy and pick up anther case when need more. shawna. --- duffey48@... wrote: > In a message dated 5/16/01 11:02:17 AM Eastern > Daylight Time, > tollytex@... writes: > > > > We're > > getting too big for diapers and pull ups don't > hold enough. We are > > using good nights right now. > > , > We use the goodnights too. They are delivered > each month by a medical > supply company, paid for by Medical Assistance. > Maddie is 7, DS/asd, and > weighs 46 pounds. We also, could never get her to > sit on a toilet. But > her aide at school has her not only sitting, but > she's made 2 deposits so > far. Carol says she's just persistent and > rewarded Maddie for sitting. > While Maddie hasn't made any deposits at home, she > now sits on the toilet for > me. I feel this is a BIG step!!!! Honestly, > before I didn't know how we > were ever going to get her to sit. > Donna > > > [Non-text portions of this message have been > removed] > > > -------------------------------------------------- > Checkout our homepage for information, > bookmarks, and photos of our kids. Share favorite > bookmarks, ideas, and other information by including > them. Don't forget, messages are a permanent record > of the archives for our list. > > -------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2001 Report Share Posted May 16, 2001 oh yes i know those alarms you are talking about,they make them for beds, i think jc pennies has one, and i know i found some online a few years ago, still have the stuff in my files somewhere, it was a wristband that had a lead that went up the sleeve and then down into there pants and if they started to go off, it would sound an alarm of some type or beeping but if your kid is a huge sweater as nathan is it might not work as well confusing sweat for urine, this is nice because they can wear anywhere even bed except shoer or pool,lol. i think i searced incontinence or that plus alarms. shawna. --- Coronilla <writingawrong@...> wrote: > We are going to attempt it starting next month. Too > much going on this month > and I want to be able ot focus on it. > > Has anyone heard of those (gosh I dont know what > theyre called)things that > beep or something when they wet their underwear? > I've been trying to find > one with no luck. Any experiences w it and if so > what were the results? > > Thanks. > > sandy > mom to Gabby (4, DS) and Adam (1) > > > >From: tollytex@... > >Reply- > > > >Subject: thank you to all > >Date: Wed, 16 May 2001 14:51:12 -0000 > > > >I wanted to thank all of you who responded to my > e-mail. WOW there's > >a lot of you. I'm glad. I'm so glad I finally > have a place to ask > >questions and there are people who can repond > instead of " we'll have > >to wait and see " or " will do it when he's > ready " How > >frustrating. Anyway, you all were very supportive > and helpful. I > >now need to get my butt in gear and do something > with all of this. I > >will start with the question that has been hanging > over me for a > >while. POTTY TRAINING!!!! When and How? He likes > to flush > >especially toilet paper, rolls and rolls. My > husband wonders why I > >buy so much. He just doen't have the attention > span to sit for more > >than 2 seconds. His teachers tried this year, but > said that he > >doesn't have a schedule for it. She was putting > him on every hour, > >but wouldn't go and then right after you put a new > diaper on... Our > >biggest problem with this is that even as a baby, > could care > >less that he is soaking wet. He'd run around all > day with a dripping > >wet diaper soak through his pants and shirt and not > care at all. > >I've tried everything I've read, but I'm wondering > if there's > >something else or if it's too early. The other boy > in his class that > >has Down syndrome, learned in a week using the same > method they were > >trying on . Let me know if you have any > suggestions. We're > >getting too big for diapers and pull ups don't hold > enough. We are > >using good nights right now. > > > >Thank you > > Tollefson > >Mother of (6)DS-ASD/ADHD and Elisha 4 1/2 > months > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at > http://explorer.msn.com > > > -------------------------------------------------- > 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 May 16, 2001 Report Share Posted May 16, 2001 , Here are some websites to review on Toilet Training . http://home.san.rr.com/t/treatment.html or http://members.spree.com/autism/autism3t.htm or http://www.accesin.com.au/~paris/autism/toilet.htm . Good Luck ! Irma -- In @y..., tollytex@y... wrote: > I wanted to thank all of you who responded to my e-mail. WOW there's > a lot of you. I'm glad. I'm so glad I finally have a place to ask > questions and there are people who can repond instead of " we'll have > to wait and see " or " will do it when he's ready " How > frustrating. Anyway, you all were very supportive and helpful. I > now need to get my butt in gear and do something with all of this. I > will start with the question that has been hanging over me for a > while. POTTY TRAINING!!!! When and How? He likes to flush > especially toilet paper, rolls and rolls. My husband wonders why I > buy so much. He just doen't have the attention span to sit for more > than 2 seconds. His teachers tried this year, but said that he > doesn't have a schedule for it. She was putting him on every hour, > but wouldn't go and then right after you put a new diaper on... Our > biggest problem with this is that even as a baby, could care > less that he is soaking wet. He'd run around all day with a dripping > wet diaper soak through his pants and shirt and not care at all. > I've tried everything I've read, but I'm wondering if there's > something else or if it's too early. The other boy in his class that > has Down syndrome, learned in a week using the same method they were > trying on . Let me know if you have any suggestions. We're > getting too big for diapers and pull ups don't hold enough. We are > using good nights right now. > > Thank you > Tollefson > Mother of (6)DS-ASD/ADHD and Elisha 4 1/2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Lynne, One of the issues of having a homebound teacher or tutor for us is homework. I am constantly adjusting 's homework depending on his current health. I usually tell the teacher's ahead of time, so they know that I'm going to be adjusting it. For a while, he had eight or nine pages of work every night, plus spelling words and fifteen minutes of reading!! He is nine, and this is more than the twelve year old's do. So, I talked with the learning specialist, and we adjusted it. Part of the equation for me is play time. Since isn't in school, play time with his friends is every bit as important as homework!! I'm so glad Sis is feeling better. Diflucan is one of the greatest drugs ever made! Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2002 Report Share Posted November 8, 2002 Sandi, Whoa, have I had a bad few couple of days!! Sis was doing better, then all of a sudden she woke up, with her head stopped up, crying, her ears that were pierced in June, they had puss running out of the holes, and her ear lobes were red as an apple. I called the doc, the nurse didn't call me back until 7:20 that night, she asked the usual, then when I told her she was on the difulcan and EES, she freaked, and said who prescribed that? That those two meds CAN NOT be taken together. I told her the doc did, but it was over the weekend, so he didn't have her chart. She said we'll probably have to run some kind of a heart test now on her since she was on both for seven days. She said to take her off antibiotic and difulcan. Start the antibiotic back on Saturday. The next day Sis was still doing horrible. I stayed all day on the phone trying to find out why the insurance is denied giving us the Zithromax Sis has been on and works the best. She didn't have any sinus infections, or etc. while on it, she takes a teaspoon every day. She's been doing that for two years. Now they denied it, we had to go to this EES stuff, and to me her body is attacking itself. Meanwhile, I have bill collectors calling and yelling at me that I HAVE to pay this bill or that bill, hospital bills, doc bills, I told them we're doing the best we can, he just yelled at me, I hung up. Finally that night I got ahold of someone at the insurance that told me they are not deniying me the meds, they are saying that every twelve days I have to come in for two more bottles, for another copay. So I told her I can do that, just to get her back on the meds she needs, and is best for her. Honestly, my hair is falling out over being stressed about all this. Her ears looked so much better today, with just one dose of the zithromax. I was crying all day yesterday, asking people to pray for us. You would think there would be some way we could help financially for these kids, and all their bills. Maybe there is, if so someone let me know. Okay, sorry I blew my horn so long. I'm still frustrated at all these people. Sometimes I have to tell her homebound teacher, whoa, we had a really bad day, and didn't get anything done. So far she hasn't had a problem with it. Take care, thanks for the ear. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 Hi Lynne, Fist of all never apologize for venting! That's one of the reasons we're here. We all do if from time to time!! About the Zithromax: I have this problem from time to time with 's insurance company. He is allergic to five antibiotics and the ones he can take, they never want to pay for!! So, I have called his insurance to find a way around this. For us, we need to do a " Prior authorization " through the Ped's office. Also, when I've been in a bind, I ask the Ped for samples (this is often the easiest way around the problem). They almost always have samples of Zithromax at the Peds. I'm not sure about the liquid, though, but you might try asking. Since the Zithromax is small, could Sis swallow a pill? I have taught how and he's been swallowing pills since age four. Let me know if you want to know the technique, most kids have great success with it. It seems like when it rains, it pours as the old saying goes!! So true, everything does seem to kind of pile up at once. Please let us know what state you live in--someone here might have an idea of who you can call for help with Sis's medical care. Here in my state, qualifies for state insurance--I do not. Certain states have programs that help kids with special needs. I'm hoping someone in this group will know of a program in your state. You could also call your local office for Senior and Disabled services and ask them what programs Sis might qualify for. Please know I'm praying for you. Hang in there, you're doing an excellent job!! Being an advocate for your child is a full time job all by itself!! I do hope Sis is feeling better soon. Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. Ten surgeries, heart surgery pending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 I would LOVE to know the method to get kids to swallow pills! Re: thank you to all > Hi Lynne, > Fist of all never apologize for venting! That's one of the reasons we're > here. We all do if from time to time!! > About the Zithromax: I have this problem from time to time with 's > insurance company. He is allergic to five antibiotics and the ones he can > take, they never want to pay for!! So, I have called his insurance to find a > way around this. For us, we need to do a " Prior authorization " through the > Ped's office. Also, when I've been in a bind, I ask the Ped for samples > (this is often the easiest way around the problem). They almost always have > samples of Zithromax at the Peds. I'm not sure about the liquid, though, but > you might try asking. Since the Zithromax is small, could Sis swallow a > pill? I have taught how and he's been swallowing pills since age four. > Let me know if you want to know the technique, most kids have great success > with it. > It seems like when it rains, it pours as the old saying goes!! So true, > everything does seem to kind of pile up at once. Please let us know what > state you live in--someone here might have an idea of who you can call for > help with Sis's medical care. Here in my state, qualifies for state > insurance--I do not. Certain states have programs that help kids with > special needs. I'm hoping someone in this group will know of a program in > your state. You could also call your local office for Senior and Disabled > services and ask them what programs Sis might qualify for. > Please know I'm praying for you. Hang in there, you're doing an excellent > job!! Being an advocate for your child is a full time job all by itself!! I > do hope Sis is feeling better soon. > > Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, > chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. > Ten surgeries, heart surgery pending. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2002 Report Share Posted November 9, 2002 , has been swallowing pills sinc she was two. We started with sugar pills and stuck them in grapes. After a few thats allit took. We then went bigger to a sweet tart candy. She has been swallowing pills ever since. Lorri Kraft ( 12 yrs CVID) Re: thank you to all I would LOVE to know the method to get kids to swallow pills! Re: thank you to all > Hi Lynne, > Fist of all never apologize for venting! That's one of the reasons we're > here. We all do if from time to time!! > About the Zithromax: I have this problem from time to time with 's > insurance company. He is allergic to five antibiotics and the ones he can > take, they never want to pay for!! So, I have called his insurance to find a > way around this. For us, we need to do a " Prior authorization " through the > Ped's office. Also, when I've been in a bind, I ask the Ped for samples > (this is often the easiest way around the problem). They almost always have > samples of Zithromax at the Peds. I'm not sure about the liquid, though, but > you might try asking. Since the Zithromax is small, could Sis swallow a > pill? I have taught how and he's been swallowing pills since age four. > Let me know if you want to know the technique, most kids have great success > with it. > It seems like when it rains, it pours as the old saying goes!! So true, > everything does seem to kind of pile up at once. Please let us know what > state you live in--someone here might have an idea of who you can call for > help with Sis's medical care. Here in my state, qualifies for state > insurance--I do not. Certain states have programs that help kids with > special needs. I'm hoping someone in this group will know of a program in > your state. You could also call your local office for Senior and Disabled > services and ask them what programs Sis might qualify for. > Please know I'm praying for you. Hang in there, you're doing an excellent > job!! Being an advocate for your child is a full time job all by itself!! I > do hope Sis is feeling better soon. > > Sandi--Mom to , age 9. Suspected IgA def., Tetrology of Fallot, > chronic sinusitis, chronic ear infections, asthma, severe allergies, GERD. > Ten surgeries, heart surgery pending. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 Hey, We tried a new way to get Lucas to swallow pills. It works great. We use ice cream, hard frozen and only a small amout wrapped around the pill. It is cold so the throat contracts and he swallows the bit whole. I have tried many things but this seems to work best. He often does not even need water afterwards. You need to make sure it is just the right size to swallow and cover the pill completely. BARBIE( Lucas, CVID, Bipolar etc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 BE very careful with grapes with little kids. Unfortunately they fit perfectly in the wind pipe and can plug it. Grapes need to be cut in half before kids eat them. Very young kids under 3 may even needs grapes peeled. This is from nursing experience with a 3 year old who is presently on a ventilator at 16 with severe brain damage. Hot Dogs also should be cut in half length wise for the same reasons. BARBIE ( With my medical hat on) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2002 Report Share Posted November 10, 2002 Sandi, Thanks for your input. I always feel so bad about blowing my horn. I know a lot of people have far many more problems than Sis does, so I get embarrassed to blow my top. Sis has been taking pills for a long time, can't remember when she started. She never had a problem. The pills for zithromax are more expensive with the insurance than the liquid. We live in Texas. I read Dale's input, I'll check out that stuff, and the one's you suggested also. I appreciate all yall do. Thanks again. Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Just a quick one regarding getting kids to swallow tablets, I've found placing them in a spoonful of yogurt is excellent, they just slip down the throat and it hides the yucky taste too! Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2008 Report Share Posted July 19, 2008 Hello All, My name is cynthia and I have been reading this group page for a couple of weeks now as I am trying to decide if I should go ahead with the SCS implant. I want to thank you all for taking the time to share your lives here for me and others alike who often feel like we are alone or even crazy with all the pain. For a long time I tried to convince myself that the pain wasn't real and I would wake up without it tomorrow. That day still has not come. I know you all understand. Being able to read and interact with others who understand brings me great comfort. I don't truly believe the Docs even understand because they have never lived in our bodies. So, thank you to you all who share your lives here. Thank you for helping me thru the day and finding comfort in knowing I am not alone. On the flip side of that my heart goes out to each and everyone of you who lives your life in pain. Does anyone live in or near Tulsa,Oklahoma? Bless you and your families, your friends and care takers and the medical community who is trying to help us too. I send a prayer for you all that you have a great day today and feel grateful for the good things in your life. Focus on what is important. I too wish my house was cleaner but I focus on being grateful for still having a house, a wonderful husband who supports me in every way that I will let him and a support group that doesn't expect me to be anyone else but myself. With great appreciation to each of you, Thank You!! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2008 Report Share Posted July 19, 2008 I live in huntsville, Arkansas about 2 hours away a From: <blueskychef@...> Subject: Thank You to All Stimulator Date: Saturday, July 19, 2008, 8:49 AM Hello All, My name is cynthia and I have been reading this group page for a couple of weeks now as I am trying to decide if I should go ahead with the SCS implant. I want to thank you all for taking the time to share your lives here for me and others alike who often feel like we are alone or even crazy with all the pain. For a long time I tried to convince myself that the pain wasn't real and I would wake up without it tomorrow. That day still has not come. I know you all understand. Being able to read and interact with others who understand brings me great comfort. I don't truly believe the Docs even understand because they have never lived in our bodies. So, thank you to you all who share your lives here. Thank you for helping me thru the day and finding comfort in knowing I am not alone. On the flip side of that my heart goes out to each and everyone of you who lives your life in pain. Does anyone live in or near Tulsa,Oklahoma? Bless you and your families, your friends and care takers and the medical community who is trying to help us too. I send a prayer for you all that you have a great day today and feel grateful for the good things in your life. Focus on what is important. I too wish my house was cleaner but I focus on being grateful for still having a house, a wonderful husband who supports me in every way that I will let him and a support group that doesn't expect me to be anyone else but myself. With great appreciation to each of you, Thank You!! e Quote Link to comment Share on other sites More sharing options...
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