Guest guest Report post Posted May 18, 2003 Carole, I hear you on that. This friend is a very wise woman, and what had happened was another friend ran out of her medical insurance because her husband had lost his job. So, with the realization of this, she had to do something to help her with her pain. For her, she chose to take something, I forget at this moment what it was. Well, she is feeling better than ever before. She just took the bull by the horns, went against Western Medicine, and is doing quite well. Now, I don't think I could ever do this, but it worked for her. I don't understand...some people have success, others like me, have total failures when trying some of the "other" treatments. I guess for me, I just have to adhere to Western Medicine for my help. I don't like it, but I am accepting it! It is OK for me. Debby [ ] Debby Your post reminded me of Cher on her farewell concert. She told the audience if there was any young people out there to listen to her. She said if there is something you are contemplating, quit contemplating and just do it! She said when you get older you don't want to filled with lots of "I wish I had done that!" Then she went on to say 'you can always say later I wish I hadn't done that!' I liked how she put it. Any way, you just made me think of it.Love,CArole K Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 18, 2003 Carole...now that I've gotten older I say BOTH of those things way too much... love jerry Your post reminded me of Cher on her farewell concert. She told the audience if there was any young people out there to listen to her. She said if there is something you are contemplating, quit contemplating and just do it! She said when you get older you don't want to filled with lots of " I wish I had done that! " Then she went on to say 'you can always say later I wish I hadn't done that!' I liked how she put it. Any way, you just made me think of it. Love, CArole K Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 21, 2003 H i Debby yes our animals are special. I still have my kitties and one old pooch. My cats are rotten they always seem to make me laugh when I need it. They get into some pretty interesting chases with each other and usually get so wound up that they and up running into each other and rolling around in a big ball of fur. Then they look at me like I did something. They are nuts but in this house that makes them perfect. Their names are Fluffy and Fuzzmonkey. My old pooches name is Pugsly he is 10 and very spoiled. the WV hillbilly Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 21, 2003 Greetings to Fluffy, Fuzzmonkey and Pugsley from Ronia and Molly, the furry queens of my household. Sophie Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 21, 2003 All, I have slipped away for a few moments, back to my little room where the computer is, to finish the final touches to a letter I am writing to the Developmental Disabilities office in Tallahassee, Florida. I've read your replies to my cry... THANK YOU. Thank for you letting me in on the " DHs " I will keep that in the back of my mind always... will more than likely bring a smile to my face when I encounter another situation on the home front. Take care all - I am now going to get my little one and rock him to sleep, so I can hit the sack myself, 4:30 a.m. comes very early. - Good night to all. debby _________________________________________________________________________ ___________ On Wed, 21 May 2003 21:54:07 EDT mfroof@... writes: > <<Re-reading what I just wrote makes me wonder whether I am > frustrated more > with my little one? or my " big " one? Debby>> > > Hi, Everyone....Debby....that puts you right up there with most of > us > concerning our DH's (dear husbands on the good days!!!). It took > me a long time to > accept the autism, but it took my DH A LOT longer. I wasn't a > spanking Mom, > either, but DH sure could get angry and yell at the kids. It was > hard for > him to accept that Gareth wasn't doing his acting out on > purpose.....there > always seems to be an underlying reason. It could be pain (GERD, > ear infections, > hip dysplasia, etc), sensory overload from lights and sound, > abdominal cramps > from possible CD. Does he calm down if you rub his arm > gently...with your > fingers or a soft stuffed toy or feather? It didn't help matters > any having a MIL > (mother in law) who was very proud of the fact they could spank and > smack > their kids with rulers back then. Of course, she made it VERY clear > that that > was just exactly what Gareth DID need. Back then, if I saw my DH > getting > upset, I would take Gareth away or tell him to leave the room. It > got to the point > where I would say " at least Gareth has a justification for his anger > and > behaviors....what's yours? " I realize this puts more work on you, > but my DH did > eventually come around (and stood up to his Mom) and was more open > to the > autism dx. and the work that was involved in dealing with it. There > seems to be > one spouse who has a harder time dealing with the dx. than the > other. Perhaps > it's denial, perhaps it's wishing it will go away, who knows. Hang > in > there....you have all of us to help get you through this. > Margaret > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 30, 2003 Hi Debby, The technique I had written was ONE of the reasons or some type of connection that we could feel to understand why some of our kids tend to lie around, act aggressively or otherwise misbehave significantly in order to move to a less stimulating area, like a gravitational security. Unfortunately, sometimes it usually happens in some unsafe areas as its too overwhelming. I use to tell my husband that its a guy thing to avoid shopping with mom. Not that I want to offend any male on this list. I have learned to understand that when he has a melt down its also to avoid doing something as he is too tired. My mom said I had alot of melt down when I was a youngster when she would take me to the stores. I believe I acted out because it was taking me away from what I wanted to do and I never like crowds, Hmm. If I write more I have a tendency to go and on and on. So I'll stop here. Is this explanantion good enough? Take care. Hugs! Irma,14,DS/ASD Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 2, 2003 Hi Debby, I have more information where you would relate to your son's behavior. Oh, you remind me of what I do for my dh, this was the only way to keep him updated. The best place was in the restroom. : ) Return later, need to run some errands this morning. Irma,14,DS/ASD > I am glad you sent it to the group. I am compiling certain pieces of > info so that my DH can read up on at his leisure. We are so new to this > - it is all very new, odd, and overhelming to us. Our Jordan is so young > (4), soooo active, and wild - we say he is 5-boys wrapped into 1. We > need all the info we can get to help us in managing our " typhoon. " > > - thanks, debby (DS/ASD) > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 2, 2003 Hi Debby & All, Ok, I'm back I did not want to bother my son as he would not be a happy camper, he was up all night. Well, back to sharing some info and I really do hope y'all could benefit from anything or at least to understand why and it does make a difference. This is what this speaker at one of the conference I attended, said " spread the word " . There is also a book on Treasure Chest of Behavioral Strategies for Individuals with Autism by Beth Fous, Ph.D. and Wheeler, M. Ed. Ok, so I am. As long as its allowed and not over-flooding the messages. : ) Tip of the day: Make sure you invest on extra ink cartridges for your printer. Save all receipts pertaining to anything related to your child's dx for tax purposes. Including when attending conference, worksops, purchasing books, etc. PUTTING IT ALL TOGETHER: Behavior Solutions That Work for Individuals with Autism Spectrum Disorders presented by - Bird-West Wheeler, educational consultant. Autism spectrum Disorders (ASD) are diagnosed when a specific constellation of symptoms is presented that includes communication impairments, sensory difficulties and social skills limitations. Since diagnosis of ASD, whether Autism, Asperger's syndrome or PDD- NOS, requires evidence of significant needs in all three of the aforementioned areas of functioning-communication, sensory and social-interventions need to include strategies that address all three areas of influence. Some of the common characteristics of ASD significantly impact learning and behavior. Such factors contribute to the situationally inappropriate, awkward, rigid, disruptive or dangerous behavior often associated with ASD. Persons with ASD frequently experience underlying communication problems, sensory issues, limitations of attention, skills deficits, modulation and regulatory challenges and motor planning difficulties that can interfere with learning and may be manifested as unacceptable behavior. Such learning and behavior difficulties can be effectively resolved by addressing the related communication, social skills and sensory needs of the learner while teaching acceptable skills, instead of simply trying to stop the problem behaviors. Intervention plans need to include a combination of effective communication supports, sensroy calming and sensory development strategies and social kills teaching. Avoid focusing efforts and trying to stop the unacceptable behaviors that are manifested when an indidividual is experiencing communication, sensory or social difficulties. Instead, focus intervention efforts toward the communication, sensory or social skills limitation that initially triggered the misbehavior. 1. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 2, 2003 Your Welcome, I have more. Let me know if you would like more? I'll send it privately so that I won't bore anyone or get tired of me posting. : ) I just retired from work and I'm getting all caught up with cleaning house, etc. you name it and when I post its my down time. Plus I have to keep my mind occupied or I'll get in one of those moods. I do miss it but I do feel less stress. Maybe I'm going through one of 's traits, my routine has changed. : ) Thanks for listening through my changes. Irma,14,DS/ASD > Irma, > > Thank you, thank you, thank you. I am going to copy this (and the > previous info on Behavior Solutions – for ASD) into a Word document, throw a large size font on it for dh and put it in the restroom like you suggest. Also, thanks for the tip on tax savings... we do go thru alot of printer cartridges. > > Two things my dh loves deary is saving money at tax time and our little > Jordan! > > - debby Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 3, 2003 Hi Debby, Could you please give me some references or links to where I could find the information that you used to present to your educators at your IEP meetings specific to DS/ASD??? I am compiling some things for my IEP meeting that is today and would really like to add some of those to my file for my son. I have much info on autism and much on DS but none specific to both for the educators and administration. Thanks so much!!! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 3, 2003 , I am sorry in repling so late, I am just getting home from work and saw your email. One site is www.dsat.ca/health/dsautism.html on page entitled " Down syndrome / Autism spectrum disorder project. page 3 of 6 second paragraph. Here are some more... www.altonweb.com/cs/downsynrome/autism.html first paragraph www.help-with-learning.com/article-6.html www.geocities.com/Heartland/Fields/6979/autigen2.html Hope this helps. debby ____________________________________________________________________ On Tue, 03 Jun 2003 10:26:06 -0400 " M. " <kmh@...> writes: > Hi Debby, > > Could you please give me some references or links to where I could > find the > information that you used to present to your educators at your IEP > meetings > specific to DS/ASD??? > > I am compiling some things for my IEP meeting that is today and > would > really like to add some of those to my file for my son. I have much > info > on autism and much on DS but none specific to both for the educators > and > administration. > > Thanks so much!!! > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 2003 debby, they are trying to, but the army keeps protecting him. they are going to court next month. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 14, 2003 An ex of mine (father of my 20 year old) was a deadbeat for quite some time. However, when uncle sam started keeping his tax returns and the state of florida attorney general's office kept hounding him and the threat of him loosing his driver's license he started paying... It was a long haul for the 8 years that he was suppose to pay. It seems like forever when you are going thru it. - take care, stay in touch with us. Debby (mom to Jordan, 4 years DS/ASD, Tallahassee, FL, USA) ________________________________________________________________________ On Sat, 14 Jun 2003 11:00:35 -0400 includeallofus@... writes: > debby, > they are trying to, but the army keeps protecting him. they are > going to court next month. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 28, 2003 Debby. I'm so sorry about your son! May I ask how he was killed? I believe when a person suffers major trauma, as you have, that the emotional shock of it all does effect our health. Are you feeling any better with your new medicine? Are you drinking plenty of water? I think I remember reading that you are off work until January. That is great!! It will give you more time to take care of yourself and rest. It has been really hot the past four days. Very near 100 degrees. For all of you that live in summer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in your post that you took 6MP. My hep last week took me off imuran for a couple of days to see if I would feel better. I have been pretty nauseated for the past couple of months and getting weaker and weaker. Well my symtons improved a great deal but when I went back on the imuran I got really sick and very shaky and weaker.. So he took me back off the imuran and started me on low doze of 6MP. The second day and third day I felt really good. Much improvement but today when I got up I was nauseated and weak again. Not as bad as before, but, now I'm worried. Do you have normal liver #? I can't remember if you said you were on low dose of prednisone? My liver # have been normal for at least a year and I'm worried that will change. I trust his judgement and action but I guess I am still a little nervous about the change. When I was real sick at the beginning of my dx, my GI at the time, put me on imuran and I developed a fever. He took me off and decided just to keep me on prednisone until I got stronger. Then he put me back on the imuran at low dose until I worked up to the 100mg. How long do you think it takes for the imuran to leave your system? Anyway I would appreciate any opinions! I will be talking to my hep early this week. -NH Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 29, 2003 , it is WONDERFUL that your liver numbers are "good." But it always amazes me that our numbers can be "good" but we feel so lousy! It just doesn't make sense! I hope that you can get to the bottom of the nausea and that somehow you can take something that will work. Give the 6MP a little time...it takes a couple of weeks to get to where you don't get sick. I don't know how long the Imuran takes to get out of your system, but you should be doing better soon! Yes, I am on 6MP. My GI had me on Imuran, but it made me so ill that she switched me to Cellcept. That one was a tad better, but within 4 months of taking that one, I was really sick again. Horrific stomach pains, etc. So, she put me on 6MP and I have been "happy" with that one. Yet, I still get sick some of the times. It didn't occur to me until just now reading your letter, that perhaps some of my nausea has been caused by the 6MP. I really am on a low dose (100 mg) but it apparently has done the "trick" because my numbers have been in the 40's-60's and for me, I think that is going to be pretty normal. The prednisone was discontinued in February! That made my day! But it took several weeks before my body was able to move and function. It was when I dx the prednisone in February, that I had to take two months off because of all of my pain in my joints, etc. Then, after getting some rest and getting back to the gym, I was able to complete the rest of the school year. (I teach first grade) As the year drew to a close, another teacher and I decided to team up for next year and as many years as I wish! That will be wonderful! The pay, of course, will be much less, but actually, it will put me in a lower tax bracket, so I won't be missing so much anyway. There is always a good side to everything! Now, I will be able to go to church in the AM if I decide I want to go. I can go to the gym in the AM and get healthier and lose some of this much hated weight! Going to the gym so far this summer, has landed 20 pounds off my body! Lots more to go, but it IS a start. As for the heat...I thought we WERE living in hell! LOL....our heat is much different that yours. When I have been back east, the humidity can just take away your breath! Horrible to my thinking. Here, though, it is a very dry heat and we can function OK. We have a very large pool (it has taken nearly 43 hours to fill it up and took 30 hours to drain! So, we spend a lot of time in the pool. When it gets so blasted hot, nothing but staying in the AC will help. Even the pool is sometimes too hot during the day, but the evenings cool off for a bit. Occasionally we leave the AC on all night, but we try to just use our Swamp Cooler at night....it keeps us cool...sticky, but cool. Our son was in a brain injury facility in Florida. He had been transferred from Minnesota to the place in Florida. One morning, well, January 19, 1996, we were called. His case manager told us they found his body at the bottom of the 100 ft radio tower in the facility. It was deemed a homicide for the first 2 weeks, and then suddenly, it was an accidental fall. Litigation soon followed. 3 years after, we received the photos of the crime scene as it was designated at first. It showed photos that we had not seen before. We discovered that it was quite probable that he and another client at the facility we on the tower. It appears that Carl was pushed off the tower. We believe that from how he was laying at the bottom of the tower and because he had numerous defensive wounds on his hands. He also had an horrific bruise on his leg where he had tried to catch himself. While we will never know exactly what happened, we do know that we chose NOT to continue with the police. It appeared that there was a major cover-up as within 3 months, everyone except one person who had worked with Carl was no longer working for the facility..........I just leave it to God to take care of! Thank you for asking because it is good for me to talk about it. Healing comes with talking. If you would like, I have two web sites for him. http://carlmadeadifference.homestead.com/Carlpage1.html and http://www.geocities.com/Heartland/Pond/8395 I would be honored if you visited. Our daughter wrote an awesome article, called A Grief All My Own. It was published in the National magazine for The Compassionate Friends several months after she wrote it. We were very proud of her work! Goodness, this is long..... Debby Re: [ ] Debby Debby.I'm so sorry about your son! May I ask how he was killed? I believewhen a person suffers major trauma, as you have, that the emotional shockof it all does effect our health. Are you feeling any better with yournew medicine? Are you drinking plenty of water? I think I rememberreading that you are off work until January. That is great!! It will giveyou more time to take care of yourself and rest. It has been really hotthe past four days. Very near 100 degrees. For all of you that live insummer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in yourpost that you took 6MP. My hep last week took me off imuran for a coupleof days to see if I would feel better. I have been pretty nauseated forthe past couple of months and getting weaker and weaker. Well my symtonsimproved a great deal but when I went back on the imuran I got reallysick and very shaky and weaker.. So he took me back off the imuran andstarted me on low doze of 6MP. The second day and third day I felt reallygood. Much improvement but today when I got up I was nauseated and weakagain. Not as bad as before, but, now I'm worried. Do you have normalliver #? I can't remember if you said you were on low dose of prednisone?My liver # have been normal for at least a year and I'm worried thatwill change. I trust his judgement and action but I guess I am still alittle nervous about the change. When I was real sick at the beginningof my dx, my GI at the time, put me on imuran and I developed a fever. Hetook me off and decided just to keep me on prednisone until I gotstronger. Then he put me back on the imuran at low dose until I worked upto the 100mg. How long do you think it takes for the imuran to leave yoursystem? Anyway I would appreciate any opinions! I will be talking to myhep early this week. -NH Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 2, 2003 Debby, I just viewed the websites. That is a tremendous tribute to your son and an effort truly from the heart. You and your family have really been thru a lot. I can't imagine how difficult it must be to lose a son in this way, It is a credit to you and your family that you have chosen to 'let it go' despite the questionable circumstances. I applaud your decision to go back to work part-time. Good for you. Again it shows your positive attitude. Thanks for sharing this. Patty -----Original Message-----From: tdcc [mailto:tdcc2000@...] Sent: Sunday, June 29, 2003 3:19 PM Subject: Re: [ ] Debby , it is WONDERFUL that your liver numbers are "good." But it always amazes me that our numbers can be "good" but we feel so lousy! It just doesn't make sense! I hope that you can get to the bottom of the nausea and that somehow you can take something that will work. Give the 6MP a little time...it takes a couple of weeks to get to where you don't get sick. I don't know how long the Imuran takes to get out of your system, but you should be doing better soon! Yes, I am on 6MP. My GI had me on Imuran, but it made me so ill that she switched me to Cellcept. That one was a tad better, but within 4 months of taking that one, I was really sick again. Horrific stomach pains, etc. So, she put me on 6MP and I have been "happy" with that one. Yet, I still get sick some of the times. It didn't occur to me until just now reading your letter, that perhaps some of my nausea has been caused by the 6MP. I really am on a low dose (100 mg) but it apparently has done the "trick" because my numbers have been in the 40's-60's and for me, I think that is going to be pretty normal. The prednisone was discontinued in February! That made my day! But it took several weeks before my body was able to move and function. It was when I dx the prednisone in February, that I had to take two months off because of all of my pain in my joints, etc. Then, after getting some rest and getting back to the gym, I was able to complete the rest of the school year. (I teach first grade) As the year drew to a close, another teacher and I decided to team up for next year and as many years as I wish! That will be wonderful! The pay, of course, will be much less, but actually, it will put me in a lower tax bracket, so I won't be missing so much anyway. There is always a good side to everything! Now, I will be able to go to church in the AM if I decide I want to go. I can go to the gym in the AM and get healthier and lose some of this much hated weight! Going to the gym so far this summer, has landed 20 pounds off my body! Lots more to go, but it IS a start. As for the heat...I thought we WERE living in hell! LOL....our heat is much different that yours. When I have been back east, the humidity can just take away your breath! Horrible to my thinking. Here, though, it is a very dry heat and we can function OK. We have a very large pool (it has taken nearly 43 hours to fill it up and took 30 hours to drain! So, we spend a lot of time in the pool. When it gets so blasted hot, nothing but staying in the AC will help. Even the pool is sometimes too hot during the day, but the evenings cool off for a bit. Occasionally we leave the AC on all night, but we try to just use our Swamp Cooler at night....it keeps us cool...sticky, but cool. Our son was in a brain injury facility in Florida. He had been transferred from Minnesota to the place in Florida. One morning, well, January 19, 1996, we were called. His case manager told us they found his body at the bottom of the 100 ft radio tower in the facility. It was deemed a homicide for the first 2 weeks, and then suddenly, it was an accidental fall. Litigation soon followed. 3 years after, we received the photos of the crime scene as it was designated at first. It showed photos that we had not seen before. We discovered that it was quite probable that he and another client at the facility we on the tower. It appears that Carl was pushed off the tower. We believe that from how he was laying at the bottom of the tower and because he had numerous defensive wounds on his hands. He also had an horrific bruise on his leg where he had tried to catch himself. While we will never know exactly what happened, we do know that we chose NOT to continue with the police. It appeared that there was a major cover-up as within 3 months, everyone except one person who had worked with Carl was no longer working for the facility..........I just leave it to God to take care of! Thank you for asking because it is good for me to talk about it. Healing comes with talking. If you would like, I have two web sites for him. http://carlmadeadifference.homestead.com/Carlpage1.html and http://www.geocities.com/Heartland/Pond/8395 I would be honored if you visited. Our daughter wrote an awesome article, called A Grief All My Own. It was published in the National magazine for The Compassionate Friends several months after she wrote it. We were very proud of her work! Goodness, this is long..... Debby Re: [ ] Debby Debby.I'm so sorry about your son! May I ask how he was killed? I believewhen a person suffers major trauma, as you have, that the emotional shockof it all does effect our health. Are you feeling any better with yournew medicine? Are you drinking plenty of water? I think I rememberreading that you are off work until January. That is great!! It will giveyou more time to take care of yourself and rest. It has been really hotthe past four days. Very near 100 degrees. For all of you that live insummer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in yourpost that you took 6MP. My hep last week took me off imuran for a coupleof days to see if I would feel better. I have been pretty nauseated forthe past couple of months and getting weaker and weaker. Well my symtonsimproved a great deal but when I went back on the imuran I got reallysick and very shaky and weaker.. So he took me back off the imuran andstarted me on low doze of 6MP. The second day and third day I felt reallygood. Much improvement but today when I got up I was nauseated and weakagain. Not as bad as before, but, now I'm worried. Do you have normalliver #? I can't remember if you said you were on low dose of prednisone?My liver # have been normal for at least a year and I'm worried thatwill change. I trust his judgement and action but I guess I am still alittle nervous about the change. When I was real sick at the beginningof my dx, my GI at the time, put me on imuran and I developed a fever. Hetook me off and decided just to keep me on prednisone until I gotstronger. Then he put me back on the imuran at low dose until I worked upto the 100mg. How long do you think it takes for the imuran to leave yoursystem? Anyway I would appreciate any opinions! I will be talking to myhep early this week. -NH Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 3, 2003 Patty, thank you for your kind words! Our lives have not been easy, but you know what? No one's life has been easy. I do not know how some of our group can go through stuff they go through. I think of Tony, his struggles, of those who are in the biggest fight of their lives over custody of their children. Others are going through court systems for various and sundry other things. So, in the big picture, yes, I have been to hell and back, but I made it! Now I can reach out to others. I am proof that one CAN live after big time trials....and be happy. My struggle has been from believing in God to actually wondering if there WAS a God, to KNOWING there is a God! My journey to faith has been a very tenuous one at best. But I am content now. It has been a tough journey, but one that makes me happy now. Have a great holiday!!! Debby Thank you for your encouragement. Re: [ ] Debby Debby.I'm so sorry about your son! May I ask how he was killed? I believewhen a person suffers major trauma, as you have, that the emotional shockof it all does effect our health. Are you feeling any better with yournew medicine? Are you drinking plenty of water? I think I rememberreading that you are off work until January. That is great!! It will giveyou more time to take care of yourself and rest. It has been really hotthe past four days. Very near 100 degrees. For all of you that live insummer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in yourpost that you took 6MP. My hep last week took me off imuran for a coupleof days to see if I would feel better. I have been pretty nauseated forthe past couple of months and getting weaker and weaker. Well my symtonsimproved a great deal but when I went back on the imuran I got reallysick and very shaky and weaker.. So he took me back off the imuran andstarted me on low doze of 6MP. The second day and third day I felt reallygood. Much improvement but today when I got up I was nauseated and weakagain. Not as bad as before, but, now I'm worried. Do you have normalliver #? I can't remember if you said you were on low dose of prednisone?My liver # have been normal for at least a year and I'm worried thatwill change. I trust his judgement and action but I guess I am still alittle nervous about the change. When I was real sick at the beginningof my dx, my GI at the time, put me on imuran and I developed a fever. Hetook me off and decided just to keep me on prednisone until I gotstronger. Then he put me back on the imuran at low dose until I worked upto the 100mg. How long do you think it takes for the imuran to leave yoursystem? Anyway I would appreciate any opinions! I will be talking to myhep early this week. -NH Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2003 Debby: I have visited Carl's site once again. You really did a beautiful job of honoring Carl. God Bless you. Love and prayers - gina P.S. Hope this finds you feeling well. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 6, 2003 Thank you .....I really appreciate it! Debby PS......I am really feeling better.... Re: [ ] Debby Debby: I have visited Carl's site once again. You really did a beautiful job of honoring Carl.God Bless you.Love and prayers -ginaP.S. Hope this finds you feeling well. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 15, 2003 In a message dated 7/15/2003 7:23:16 PM Eastern Daylight Time, debbysmith@... writes: > After all of this happend, I slipped into a stuppored state of who knows > what. I thought we were going to fianlly get some assistance with a > behavior therapist, a speech person, and some respite (all of which the > doctor recommended). Then I got the phone call from the state's DSP > office saying Jordan did not qualify. Hi Debby, I am so sorry to hear that Jordan wouldn't get the services. I think that stinks. I think many of us with kids with special needs are in the same predictament when it comes to childcare. I agonize about this every day. I work only seasonal so I can be home for the school year but I would love to work part time. I would be stuck if Zeb was sick or had school vacation. I decided to forget it and stay home. I know that I could probably find something but I suppose I am not desperate enough yet. I hope you can find a solution. Charlyne Mom to Zeb 10 DS/OCD ? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 15, 2003 Hi Debby, Just read your message. I'll respond back as soon as I can, ok? We're getting a taste of Claudette. Scratch one chore of my list on watering the yard. Its my 16 y/o's turn with the computer. Things I have to do.... learn how to share and take turns. ; ) Take care and hugs. Irma > Oh my, what a wonderful write up. > > My Jordan, who is 4 years 6 months, displays some of the actions > described in your write up. Jordan is pretty verbal... we are fortunate. > > However, because of his being so verbal and also social, the doctor that > just assessed him, wrote him up as PDDNOS. What this means for us is > that our state developmental service program (DSP) will not qualify him > as autistic and therefore, will not provide services. > > Irma, I was preparing a response to your July 5, 23:55:02 email, but > somehow lost your incoming email and the reply I was drafting. You had > asked about how the doctor dx'd Jordan. > > After all of this happend, I slipped into a stuppored state of who knows > what. I thought we were going to fianlly get some assistance with a > behavior therapist, a speech person, and some respite (all of which the > doctor recommended). Then I got the phone call from the state's DSP > office saying Jordan did not qualify. > > My only issue now is my job... I've worked at the same place for 17 years > (I am the office business manager). I've got care for him arranged thru > the rest of the summer; however, when school starts back up, I will only > be able to work 5 hours a day at the most (his school starts at 8:30 and > ends at 2:30 - the drive from my house, to the school, and to my office > is 50 minutes, minimum). > > So I am now pondering whether to give up my job (and my pay check and my > health insurance) and try and find something part time (I am not a young > chick anymore) so I can be with him when he gets out of school. I have > lots of skills - computer, desktop, electronic files: adobe acrobat pdf, > writing skills, meeting planning - I just fail in the area of marketing > my self to businesses. I am very hestitant at this point to walk into my > boss' office and say " well, I'm giving my two weeks " before I have > something part time lined up. > > Sara, I am interested in more ideas like you were taking about earlier on > how to help find or create employment. > > It looks like the situation is driving the life choice in our household. > It is scary, but I love my little Jordan and want to be there for him. > > - debby (mom to Jordan) > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 16, 2003 Irma, Oh, we got a glimpse of Claudette on the last night's world news. Hope it doesn't turn too bad for you. debby ____________________________________________________________ Hi Debby, Just read your message. I'll respond back as soon as I can, ok? We're getting a taste of Claudette. Scratch one chore of my list on watering the yard. Its my 16 y/o's turn with the computer. Things I have to do.... learn how to share and take turns. ; ) Take care and hugs. Irma Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 16, 2003 > Irma, > Oh, we got a glimpse of Claudette on the last night's world news. Hope it doesn't turn too bad for you. > debby Hi Debby, All is well at this end. Just being a hermit and now going to bother in writing a novel. So I'm sending this off the list as it'll be long. Ready for some homework or should I say a refreshing course. I just went through on what you've mentioned on giving up work not too long ago. I'm learning to adjust " again " . I did give up working in the past when was younger. Here I'm again not working due to the care of . This time I'm letting my 16 y/o son Rick work, his choice. I had to set him free and not worry about his brother and let him grow out in the world. He use to help me out alot. We shall see when they return back to school next month. I hope the hours you've mentioned works out for you when Jordan returns to school. What a decision having to be working for 17 yrs. But then I do know our children requires alot of attention. Good luck on this issue. Whatever works out for y'all. This is an issue getting through each day because of the concerns for our kids. This is also a battle to survive such strains. Back to not qualifying for services. I hope you could dispute it/ appeal it or whatever it takes if possible. >>>>>However, because of his being so verbal and also social, the doctor that just assessed him, wrote him up as PDDNOS. What this means for us is that our state developmental service program (DSP) will not qualify him as autistic and therefore, will not provide services.>> **********Baloney******** Humbug*******you name it. I hope you do find a solution. I know, I know easy said than done, I pray that you do find an answer. If there is a need for his daily challenges than its worth the battle. Is there any way that the physician could rewrite a " reconsideration medical necessity letter " to describe the condition of your child proving that he will be considered disabled due his functional limitations from his disability condition, or combination of conditions, are the same as the disabling functional limitations of any impairment. To determine whether the child's impairment causes " marked and severe functional limitations, " on how it affects his ability to function on a day-to-day basis and over time. Watching the choice of words describing him with mental impairment. It should not be based just because he is verbal & social, but hooray on that, that he can. I know most of the time when including the label it should be written in with the IQ status. What was his functional assessment? -- * http://www.pacer.org/ebd/ffcmh.pdf The priority population for mental health services consists of children and adolescents under the age of 18 years with a diagnosis of mental illness who exhibit serious emotional, behavioral or mental disorders and who 1)have a serious functional impairment or 2)are at risk of disruption of a preferred living or child care environment due to a psychiatric symptoms; or 3)are enrolled in a school system's special education program because of a serious emotional disturbance. --- Questions to ask- Do you want services for your son? Why? Because families deserve the best, promising interventions and best practices for our children with mental health needs. Understanding and addressing the challenging behavior of our children with special needs. No one should be denied an opportunity to learn. Your child should be found eligible for services due to his learning disability. A problem does not disappear simply because it is not severe enough to meet the criteris for a diagnosis. Parents should insist on a list of specific written recommendations for how to help our child as a result of any evaluation. What happens to the child who shows certain signs, but is still showing bizarre behavior at home or school and is unable to stay focused on the ability to communicate and interact, etc. on whatever issue you want for his needs. Characteristics Some or all of the following characteristics may be observed in mind to severe forms: Communication problems (e.g., using and understanding language); Difficulty in relating to people, objects, and events; Unusual play with toys and other objects; Difficulty with changes in routine or familiar surroundings; and Repetitive body movements or behavior patterns. Children with autism or PDD vary widely in abilities, intelligence, and behaviors. Some children do not speak; others have limited language that often includes repeated phrases or conversations. People with more advanced language skills tend to use a small range of topics and have difficulty with abstract concepts. Repetitive play skills, a limited range of interests, and impaired social skills are generally evident as well. Unusual responses to sensory information -- for example, loud noises, lights, certain textures of food or fabrics -- are also common. Educational Implications Early diagnosis and appropriate educational programs are very important to children with autism or PDD. Public Law 105-17, the Individuals with Disabilities Education Act (IDEA), includes autism as a disability category. From the age of three, children with autism and PDD are eligible for an educational program appropriate to their individual needs. Educational programs for students with autism or PDD focus on improving communication, social, academic, behavioral, and daily living skills. Behavior and communication problems that interfere with learning sometimes require the assistance of a knowledgeable professional in the autism field who develops and helps to implement a plan which can be carried out at home and school. The classroom environment should be structured so that the program is consistent and predictable. Students with autism or PDD learn better and are less confused when information is presented visually as well as verbally. Interaction with nondisabled peers is also important, for these students provide models of appropriate language, social, and behavior skills. To overcome frequent problems in generalizing skills learned at school, it is very important to develop programs with parents, so that learning activities, experiences, and approaches can be carried over into the home and community. With educational programs designed to meet a student's individual needs and specialized adult support services in employment and living arrangements, children and adults with autism or PDD can live and work in the community. Autism and Pervasive Developmental Disorder-NOS (PDD): Social symptoms & Sensory symptoms Educational/behavioral interventions: These strategies emphasize highly structured and often intensive skill-oriented training that is tailored to the individual child. Therapists work with children to help them develop social and language skills. Because children learn most effectively and rapidly when very young, this type of therapy should begin as early as possible. Recent evidence suggests that early intervention has a good chance of favorably influencing brain development. This piece at http://www.txffcmh.org/ click under disabilites. Communication is a common problem in children who have autism and related disabilities. They often have difficulty understanding even the simplest spoken communication from others. Because of this they have problems knowing what is or isn't happening during their day and why changes occur in their routine. They may have difficulty switching from one activity to the next and understanding why they cannot do something they want to do at a particular time. For a child with disabilities even the simplest directions can come and go too quickly for them to process and understand. A visual support can really help them understand the message. @ http://card.ufl.edu/visual.html or at http://card.ufl.edu/topics.html Here are more sites for you to review. I know you're aware of them but just thought I remind you. http://www.nichcy.org/stateshe/fl.htm http://www.autismfl.com/links.htm http://autism.fsu.edu/PDFs/ServicesSSI.pdf Have you contacted the Mental Health facility to see what services are available? With state funds being cut you just never know what other options you'll find. Contact the CARD Staff and see what you could find out. This is a piece from TX info but it could be similar to what your state has to offer. OUR PRINCIPLES The Texas Federation of Families for Children's Mental Health maintains that children and youth with emotional, behavioral or mental disorders: have unique needs that require individualized services. must be respected for their rights, preferences, values, strengths, cultural and racial backgrounds. are entitled to full citizenship in their communities. must receive what is necessary to achieve their full potential. belong with families and need enduring relationships with adults. make positive contributions to their families. must receive supports necessary to remain with their families; out- of-home placement must be considered as a last resort. When children cannot remain with their families, out-of-home placement must be viewed as temporary and as an extension of the family. This treatment must be available close to the child's home and family members must be involved in all decisions regarding their child. Well I hope something helps and I apologize for my babbling. Our children are poorly served by programs that are inadeuately funded and poorly managed. It takes us to voice for our childs needs and do the leg work. Take care. Irma Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 16, 2003 Irma, You asked... " What was his functional assessment? " It was 18 to 24 months, w/IQ of 50. Thanks for the info. We will get services for him thru the school system and he is also a client of our local CARD agency. It is the state children's mental health office that has rejected. - debby Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 17, 2003 Im sort of in the same boat, cant find any one for care of nathan outside of his home health care stuff, so when we dont have an aide and no school or he is sick i have to stay home or finda a replacement etc, becoming very difficult, ive tried everything for a sitter when HHA's dont show up or call in sick, im at the point to where i may need to go back being a night nurse---3rd shift, so i can be home during the day for whatever, but so far the only thing available is the local care center and i hated it there but if push comes to shove i geuss beggars cant be choosy. shawna. Re: Debby > In a message dated 7/15/2003 7:23:16 PM Eastern Daylight Time, > debbysmith@... writes: > > > > After all of this happend, I slipped into a stuppored state of who knows > > what. I thought we were going to fianlly get some assistance with a > > behavior therapist, a speech person, and some respite (all of which the > > doctor recommended). Then I got the phone call from the state's DSP > > office saying Jordan did not qualify. > > Hi Debby, > I am so sorry to hear that Jordan wouldn't get the services. I think that > stinks. I think many of us with kids with special needs are in the same > predictament when it comes to childcare. I agonize about this every day. I work only > seasonal so I can be home for the school year but I would love to work part > time. I would be stuck if Zeb was sick or had school vacation. I decided to forget > it and stay home. I know that I could probably find something but I suppose I > am not desperate enough yet. I hope you can find a solution. > Charlyne > Mom to Zeb 10 DS/OCD ? > > > Quote Share this post Link to post Share on other sites