Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Welcome Adele (great name - my mom's name was Adele - called Delli for family) I remember that 12-16 were the worst years of my life parenting my son who is now 22. We got the Ds/PDD-Nos?/ASD dx at age 12. We also used meds thru those years, but now use nothing and are able to usually modify behavior by using contingencies - do what I want then we will do what you want and reminding him of rewards for compliance - we call them star days for a weekly outing. As a nurse, I have found the easiest way to exist with meds and doctors is to set up a work sheet where I can track meds, notes about meds to tell the docotrs. I used a spread sheet for the meds, which if you want, I could send you a copy privately. This can be modified to suit your family. Then I only needed to print it out monthly or at one point I printed out the sheet and then handwrote it. I can only give you this light at the end of the tunnel - things do get better. The teen years have been the hardest and adulthood is a pice of cake - compareatively. Not all issues go away but many have modified. As to the food thing - Elie also perseverates over when what and how with food. He has very precise desires aboout food. One way we handle that is with a clock for when food is to be served. Then he only has to match it up with a working clock to see the time. Our bigger issue is making sure that he gets the food he will eat with us fixing it so that he gets the nutrients he needs. We do it by baking vegetables and fiber and lots of beans, lentils, grains into his bread. Other families have other food issues. > By way of introduction, my name is Adele, I live in Minneapolis with my > husband and three children, all of whom are special in their own way. Our > youngest son, Carl (15 in Feb.) has Down Syndrome coupled more recently with > the PDD-NOS diagnosis. After all these years I joined this group along with > the UpsNDowns group several weeks ago because I was feeling particularly > burdened by our son's behavior and the ensuing doctor appointments, > phonecalls, etc. We have tried a variety of approaches and are now > experimenting with various medications in an effort to maximize his ability > to learn and mature without his negative behavior getting in the way. As he > gets older (and bigger) the public displays of oppositional behavior become > especially problematic. Neither I nor my husband choose to keep him > medicated yet we must admit that the two medications he's on (Citalopram and > Abilify) seem to help him. He also takes Metformin and Synthroid, as > prescribed by a > pediatric endocronologist. I think what wears me out more than anything is > trying to track the various medications, keeping notes to report back to the > doctors, and playing the role of coordinator for all his various services. > It seems to get in the way sometimes of just being a " mom " to our son, and > experiencing him on that level. Fortunately, despite his difficult behavior > and obsession with food (we have no sooner finished lunch than Carl is > asking, " What's for dinner? " That is usually his first question when he gets > off the bus in the afternoon as well!) Carl is full of compliments and love, > e.g., " You have such a cute face! " I've heard it many times and yet it > never fails to brighten my mood. How many people tell you that in a day?!? > > So, there's my story. I am a fairly private person so I don't know how > often I'll be adding my two cents' worth but I look forward to tracking the > info shared on therapies, medications, options for people with DS and > PDD-NOS as well as the personal feedback and sharing and will make an effort > to respond to emails and questions. > > Warm regards, > > Adele > > __________________________________________________________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. > http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Welcome Adele, I sure hope you gain some insight into handling all the difficult situations. There are many years of great experience on this site. You have come to a great place for learning and sharing and support. At times, each of the participants on the site have helped get me through the day. Our Jake is 8 1/2 DS/PDD and we just recently started the Risperdal and gluten free diet. The Risperdal makes him so crazy hungry that he basically grazes all afternoon. I sometimes do not even worry about his " dinner " because he has eaten so many little things from the moment he gets home. He can be relentless. He also does not like to eat with anyone, so he won't eat until we are all completely fiinished. It has been a strange year and a half for us but we finally feel we have a tiny grip on what he needs. Welcome to this awesome group! Holly In PA new memeber By way of introduction, my name is Adele, I live in Minneapolis with my husband and three children, all of whom are special in their own way. Our youngest son, Carl (15 in Feb.) has Down Syndrome coupled more recently with the PDD-NOS diagnosis. After all these years I joined this group along with the UpsNDowns group several weeks ago because I was feeling particularly burdened by our son's behavior and the ensuing doctor appointments, phonecalls, etc. We have tried a variety of approaches and are now experimenting with various medications in an effort to maximize his ability to learn and mature without his negative behavior getting in the way. As he gets older (and bigger) the public displays of oppositional behavior become especially problematic. Neither I nor my husband choose to keep him medicated yet we must admit that the two medications he's on (Citalopram and Abilify) seem to help him. He also takes Metformin and Synthroid, as prescribed by a pediatric endocronologist. I think what wears me out more than anything is trying to track the various medications, keeping notes to report back to the doctors, and playing the role of coordinator for all his various services. It seems to get in the way sometimes of just being a " mom " to our son, and experiencing him on that level. Fortunately, despite his difficult behavior and obsession with food (we have no sooner finished lunch than Carl is asking, " What's for dinner? " That is usually his first question when he gets off the bus in the afternoon as well!) Carl is full of compliments and love, e.g., " You have such a cute face! " I've heard it many times and yet it never fails to brighten my mood. How many people tell you that in a day?!? So, there's my story. I am a fairly private person so I don't know how often I'll be adding my two cents' worth but I look forward to tracking the info shared on therapies, medications, options for people with DS and PDD-NOS as well as the personal feedback and sharing and will make an effort to respond to emails and questions. Warm regards, Adele __________________________________________________________ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 welcome adele and carl!! its fantastic to meet someone in my neck of the woods, lol i live in north central iowa, and my BIL and his family live up by minneapolis , they work in rochester, and recently bought a acerage and had a baby. Anyways I had to laugh a little at the food thing, lol, does the very same thing, " eat " or " snack " or " unry " and signs hungry, even just after he ate, and as soon as he gets into the truck after school or at the least in the door of home. And he is on a counted carb diet, uuugh. currently doesn't take any behavior medications, he did in the past, and just pretty much outgrew them. is 16, and can be moody at times, but thankfully he tends to keep his moodiness for home or school and not when out and about as we did years of behavioral therapy with him and his teachers. keep us posted!! many hugs! shawna In a message dated 1/6/2008 11:20:55 A.M. Central Standard Time, lubita_53@... writes: By way of introduction, my name is Adele, I live in Minneapolis with my husband and three children, all of whom are special in their own way. Our youngest son, Carl (15 in Feb.) has Down Syndrome coupled more recently with the PDD-NOS diagnosis. After all these years I joined this group along with the UpsNDowns group several weeks ago because I was feeling particularly burdened by our son's behavior and the ensuing doctor appointments, phonecalls, etc. We have tried a variety of approaches and are now experimenting with various medications in an effort to maximize his ability to learn and mature without his negative behavior getting in the way. As he gets older (and bigger) the public displays of oppositional behavior become especially problematic. Neither I nor my husband choose to keep him medicated yet we must admit that the two medications he's on (Citalopram and Abilify) seem to help him. He also takes Metformin and Synthroid, as prescribed by a pediatric endocronologist. I think what wears me out more than anything is trying to track the various medications, keeping notes to report back to the doctors, and playing the role of coordinator for all his various services. It seems to get in the way sometimes of just being a " mom " to our son, and experiencing him on that level. Fortunately, despite his difficult behavior and obsession with food (we have no sooner finished lunch than Carl is asking, " What's for dinner? " That is usually his first question when he gets off the bus in the afternoon as well!) Carl is full of compliments and love, e.g., " You have such a cute face! " I've heard it many times and yet it never fails to brighten my mood. How many people tell you that in a day?!? So, there's my story. I am a fairly private person so I don't know how often I'll be adding my two cents' worth but I look forward to tracking the info shared on therapies, medications, options for people with DS and PDD-NOS as well as the personal feedback and sharing and will make an effort to respond to emails and questions. Warm regards, Adele __________________________________________________________ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. _http://mobile.http://mobhttp://mobile.<Whttp://mobile.<Wht_ (http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ) [Non-text portions of this message have been removed] **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 we also remind nathan of the times when food is served and he will look at the clock, it does help greatly with any behaviors regarding food, because he knows its coming. we also have done the " first this, then you may have or do this " behavior tatics with nathan and started this way back when he was 3 or 4 and it still works at 16, most of the time. shawna In a message dated 1/6/2008 11:53:05 A.M. Central Standard Time, pastmidvale@... writes: He has very precise desires aboout food. One way we handle that is with a clock for when food is to be served. **************Start the year off right. Easy ways to stay in shape. http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489 Quote Link to comment Share on other sites More sharing options...
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