Guest guest Posted May 1, 2006 Report Share Posted May 1, 2006 Thanks , nice to meet you. Darlene -------Original Message------- From: john stratton Date: 05/01/06 10:02:40 Rheumatoid Arthritis Subject: Re: new member intro Yes Darlene, I second that , welcome here allso. Helen <helen050959@...> wrote: hi Darlene - welcome to the group.Helen PNW Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Wow, thanks . That is so nice of you to say about me and I appreciate it. I am used to just getting hate email really, lol. You could probably say I am a "no BS" type person, certainly. I am the girlfriend you would want to take on a shopping trip because I would honestly tell you if something looked nice on you or not. :-) But if you want someone to tell you it looks nice regardless, I would be the last person you would want with you! lol. I guess there is a place for someone like me somewhere. But I do feel that more people like the "BS" type person than the "non-BS" type. It feels that way to me most of the time anyway! RoxannaYou're UniqueJust like everyone else... Re: ( ) new member intro Roxanna,Thanks for the welcome! Your posts have caught my eye, and I find you quite eloquent. You write so coherently and with a nice balance and sense of reason. Very persuasive. You have a gift for taking sometimes complex ideas and making them seem so simple. You are skilled at offering a fresh perspective, without offending ( at least not me!). Am I mistaken in assuming you are a "no BS" type of woman, intuitive, and strong?I look forward to more of your input! >> Welcome to our group ! Feel free to join in anytime you want!> > Roxanna> Autism Happens> ----- Original Message ----- > Change settings via the Web ( ID required) Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional Visit Your Group | Terms of Use | Unsubscribe .. No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008 12:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Roxanna, I'd take you shopping with me any day! I'm a No BS kind of person too. I think we've rubbed elbows a few times on here before but it doesn't change how much I respect and value your opinion. If we are all being honest with ourselves, we don't need this site to be full of BS. We get enough of that out there from school, society, relatives, etc... We need a place you can go to get the down and dirty facts. That's what I'm looking for, at least. So thanks for the "no sugar coating" version of your truth. I like it! Re: ( ) new member intro Roxanna,Thanks for the welcome! Your posts have caught my eye, and I find you quite eloquent. You write so coherently and with a nice balance and sense of reason. Very persuasive. You have a gift for taking sometimes complex ideas and making them seem so simple. You are skilled at offering a fresh perspective, without offending ( at least not me!). Am I mistaken in assuming you are a "no BS" type of woman, intuitive, and strong?I look forward to more of your input! >> Welcome to our group ! Feel free to join in anytime you want!> > Roxanna> Autism Happens> ----- Original Message ----- > Change settings via the Web ( ID required) Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional Visit Your Group | Terms of Use | Unsubscribe .. No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008 12:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2008 Report Share Posted August 3, 2008 It's a shopping date, then! lol. I do like having a "no-BS" place for information. I agree that we get so much from everyone around us that it can overwhelm and dishearten us a lot. But still, seems like sometimes people do want to hear "only good things" or even to stretch situations into things that they are not. It can frustrate me because I like to see what I am dealing with so I can...deal with it! But that is just my way. I think it's a lot worse to think things are all great or that they will be only to find out later that it's a lie. The moment I first realized, for instance that the school people were not really there to help me - big shock! lol. I mostly regretted that someone had not clued me in and I had wasted time working under the assumption that they really did want and know what was best for my child. Once I knew that, I was much better since I felt more able to deal with things/with them. We used to have a local autism support group that I was super involved in putting together. A few key people left and the ones who came in to replace them were the type of people who only wanted to talk about "good things." No sad news, no problems could be discussed! I realized, quickly, that it was less a support group then and more like a social club. At the time this was happening, my oldest ds (hfa, dyslexia) suddenly refused to go to school and I was dealing with a lot of "OMG, what will happen to him now?" feelings. I was depressed, stressed and so sad at all the things in life he couldn't have and we could not enjoy watching him enjoy. It was a bad time for us. Anyway, there I would go to the board meetings or the group meetings and we could only sit there and listen as a few key people told flowery stories about wonderful things their kids were doing - dances their kids were going to, parties they had attended, friends that they had. Their kids had friends? Went to parties? My kid never left his room! The "president" actually would say, "Anyone else have a HAPPY story to tell! We don't want any sad things!" The people who spoke would say really stupid things (I thought they were stupid!) like, "If you just believe and do it (this way, that way), everything will turn out just fine! You're child will go to college like mine and be just fine!" I was gagging. I couldn't even get my kid through high school, let alone think about college. What crap! Needless to say, how long did I last in that group? lol. Yes, I was the only one who said, "This is crap!" People think that I am "mean" for that. But I think it's very painful to attend these things, to be in pain and to have people trivialize that by saying it's all this simple or "if you do this my way, you will have my same successes or your child will have the same outcomes." That is not true but it's also hurtful to say it is true. We have people who have kids who will never speak, let along go to a high school dance. We can appreciate good things, to be sure! And celebrate the successes! I agree! But we can't ignore the flip side of this either. I later realized that the people who had real and serious problems with their kids and autism did not come to the meetings any longer, had stopped coming or never come at all. It was really only the people who had raised their kids and their kids had done well or had kids with more minor problems who came and had fun chatting. They thought I was a wet blanket and I thought they were in need of a real problem in life. Anyway, ugh, I was reading some old diary of mine that I found from about 13 years ago this morning as I cleaned up my room. I guess this has brought back a lot of memories!!! I was reading about the challenges we went through to get my ds into Kindergarten years ago (he's 19 yo now!!!) and I've been running down memory lane ever since....I'll stop now! lol RoxannaYou're UniqueJust like everyone else... Re: ( ) new member intro Roxanna,Thanks for the welcome! Your posts have caught my eye, and I find you quite eloquent. You write so coherently and with a nice balance and sense of reason. Very persuasive. You have a gift for taking sometimes complex ideas and making them seem so simple. You are skilled at offering a fresh perspective, without offending ( at least not me!). Am I mistaken in assuming you are a "no BS" type of woman, intuitive, and strong?I look forward to more of your input! >> Welcome to our group ! Feel free to join in anytime you want!> > Roxanna> Autism Happens> ----- Original Message ----- > Change settings via the Web ( ID required) Change settings via email: Switch delivery to Daily Digest | Switch format to Traditional Visit Your Group | Terms of Use | Unsubscribe .. No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.5.10/1584 - Release Date: 7/31/2008 12:00 PM No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.10/1585 - Release Date: 8/1/2008 6:39 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Roxanna, I am so right there with you. The coordinator for the parent support group at our school insisted that we had to avoid complaining about the school's IEP process and focus on positive things. It was just worthless to me, so I quit going. I really do envy people who have children who have AS the way my husband has AS. He meets the diagnostic criteria, but it's mild. Mild enough that he has a Ph.D., a job he loves, and a family with a wife and five kids. If my son (who's 17 now) looked to be on track for all of that, I'd be so happy. Unfortunately, my son's therapist recently warned me that sending him to college is unlikely to work out. She says she's seen numerous children/young adults with his degree of impairment crash and burn when they have to take on the degree of personal autonomy that college demands. And just three days ago my son's psychiatrist advised me to start investigating establishing a guardianship for him once he's 18. I must have looked stunned. I mean, I know he has a lot of trouble with various things, but he's also very bright, and all these years I've been hoping that I'd be able to make things work out for him. His psychiatrist asked me if I thought he could take care of himself in the world any time soon, and I have to admit that there's no way he's going to be ready for that--maybe never. She says if that's the case, we need to arrange things legally so that we can take care of him. Sigh. Just writing about it makes me tear up. It's like have a child with AS is one long series of disappointments and adjustments for me. I make all these sunshiny plans for how I'm going to get him to independence, and one after another they wind up being pipe dreams. I *need* somebody to understand how that feels and to help me cope with it and figure out how to unravel the complex issues you face when it looks like your child *isn't* going to be OK in the end. It's just depressing. Sue C. On Aug 4, 2008, at 7:35 AM, Roxanna wrote: <snip> I later realized that the people who had real and serious problems with their kids and autism did not come to the meetings any longer, had stopped coming or never come at all. It was really only the people who had raised their kids and their kids had done well or had kids with more minor problems who came and had fun chatting. They thought I was a wet blanket and I thought they were in need of a real problem in life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 , I'm so glad someone understood me! After I wrote that, I somewhat regretted it since I figured people would misunderstand what I meant and think I just want to discuss "gloom and doom" at all times. You really do get what I mean and I am right there where you are right now - my older ds is 19 yo (hfa, dyslexia) and it has been very scary and mind boggling the last few years. I don't know your ds, obviously, but I would take the advice you are getting with a little skepticism in that, sometimes things go well regardless of how bad it looks at the time. When my ds could not go to school any longer, I thought this was "it." I thought this was the farthest he was going to go in education, independence, life. I should back up just a little and explain that I am a little opposite you in the dream department because when he was 3 and was evaluated for autism, they told me at the time that they had no idea if he would improve or not. The exact words to us were, "He could always be just like this." At the time, he could not talk and he spent his days stacking VCR tapes, flipping light switches, spinning things, screaming and headbanging. I did not expect better than that. So each time he got somewhere - gained skills or improved something - I was pleasantly surprised and grateful!! Each time he got a new problem or we became aware of a problem he had that we did not know existed, I expected that problem to be with us forever. Regardless of the progress, I knew the whole time that we would bottom out somewhere along the way. I was just waiting for him to hit that wall. I guess that is what he did at age 16 when he refused to go near the school ever again. And so I was like, "Oh. it's here. It's done. This is it. Okay. Now what do we do!?!?!?" This was such an agonzing moment for me. It still is, I can feel it still today. Anyway, I have not been having any great/grand dreams of college for him, marriage, a family - nothing. Each gift, each step forward, was it's own reward and I was not expecting another. (I did dare to dream and hope for a little bit after a few years of progress once. Then I regretted that and made myself stop it.) lol. Not to say I was such a pessimist. But maybe so! Anyway, we did discuss getting guardianship of him as well before he turned 18 and we have not yet done anything like that. For one thing, he relies on us to make decisions. Even if he goes to the doctor, we go with him because he has trouble telling the doc what is wrong. And for his IEP stuff (and everyone should be aware, the school will no longer have to talk to YOU when your child turns 18 unless you are given those rights...so beware!) he does not sign anything without asking me first. So the school still goes through us (he will not even attend the meetings, so they have no choice but to deal with me.) I am not sure if we shouldn't do something legal anyway. We saw a lawyer but I don't feel he knew enough about disabilities to advise us but he said "Nah, don't do anything right now." So I am confused so far on the ramifications of this. Anyway, what I really wanted to say to you was about college and the future. Don't be so quick to cross things off your dream list but do have a healthy dose of skepticism/pessimism. I don't know how else to say that and make it sound better. lol. My ds has done more than I ever expected or dreamed he would be doing right now. But he's not doing all that I would have hoped he could do. With everything, take it one step at a time and be happy when he gets firm footing on that one step. Then take a breath and say, "Now what? Is this all or can we do more?" And always realize that some steps are not straight up! Some steps are to the side of you. I do not make major leaps through windows! lol. But I have stumbled over steps that are beside me and that I had not seen before I fell on them. I hope that makes sense. If not, in short, while one plan may not work, there may be other ways to achieve that same goal. Or you may have to alter the goal and find a different goal. And of course, it is painful to have to do that. So write me whenever you want to. I'm totally there! RoxannaYou're UniqueJust like everyone else... ( ) Re: new member intro/ Roxanna, I am so right there with you. The coordinator for the parent support group at our school insisted that we had to avoid complaining about the school's IEP process and focus on positive things. It was just worthless to me, so I quit going.I really do envy people who have children who have AS the way my husband has AS. He meets the diagnostic criteria, but it's mild. Mild enough that he has a Ph.D., a job he loves, and a family with a wife and five kids. If my son (who's 17 now) looked to be on track for all of that, I'd be so happy.Unfortunately, my son's therapist recently warned me that sending him to college is unlikely to work out. She says she's seen numerous children/young adults with his degree of impairment crash and burn when they have to take on the degree of personal autonomy that college demands.And just three days ago my son's psychiatrist advised me to start investigating establishing a guardianship for him once he's 18. I must have looked stunned. I mean, I know he has a lot of trouble with various things, but he's also very bright, and all these years I've been hoping that I'd be able to make things work out for him. His psychiatrist asked me if I thought he could take care of himself in the world any time soon, and I have to admit that there's no way he's going to be ready for that--maybe never. She says if that's the case, we need to arrange things legally so that we can take care of him.Sigh. Just writing about it makes me tear up. It's like have a child with AS is one long series of disappointments and adjustments for me. I make all these sunshiny plans for how I'm going to get him to independence, and one after another they wind up being pipe dreams. I *need* somebody to understand how that feels and to help me cope with it and figure out how to unravel the complex issues you face when it looks like your child *isn't* going to be OK in the end. It's just depressing.Sue C.On Aug 4, 2008, at 7:35 AM, Roxanna wrote:<snip>I later realized that the people who had real and serious problems with their kids and autism did not come to the meetings any longer, had stopped coming or never come at all. It was really only the people who had raised their kids and their kids had done well or had kids with more minor problems who came and had fun chatting. They thought I was a wet blanket and I thought they were in need of a real problem in life.No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.5.12/1589 - Release Date: 8/3/2008 1:00 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Oh.,your son sounds wonderful and what a great bunch of guys to let him play on their team. But I too worry about all our children ...when it comes to being out in the real world...it is a big concern for me and my son is just turning 13. I worry about a couple of students in school and worry about how they are going to do...becuase I don't think they can make it on their own. Jan Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. > > From: carolynsuelowerycha ttanooga <sue@...>> Subject: ( ) Re: new member intro/> > Date: Monday, August 4, 2008, 10:13 AM> > > > > > > Dear Sue,> I know just how you feel, you are rocking along and things are going > well and then you get "body slammed" with something like your > psychiatrist' s pronouncement (and they have little idea of the impact > of a statement like that)! > > Is it possible that you can pursue parallel tracks for him? Work on > setting up possible guardianship, but at the same time pursue anything > and everything that might let him live independently?> > Maybe the key is your words "anytime soon" doesn't mean never! Maybe at > some point in his twenties or thirties he could be independent? Could > he manage independence with a little help, a part time aid or a > roommate? We have gone through SO much of this with our son and in our > county, there is precious little of the services we needed...but other > areas of the country offer so much more. It seems there is either 24 > hours a day supervision and nursing care, which our DS, 23, does not > need, or NOTHING. No in between, but I know there are a few programs > and services that can help him and you with independence. That was and > is absolutely my biggest fear that he would never be able to function > on his own. He may still never be able to handle money or a budget with > his math skills, but if we can find help in that area, he might be able > to live on his own someday. > > Eighteen was really more like eight for our son (LOL), but he has > managed now at 23, to go off to school in a somewhat supervised > environment and is thriving. He is probably the oldest kid at this > school, but he's doing it and loving it. As a matter of fact, he's put > off coming home now for the upcoming three weeks because they he is > having too much fun with all the weekend activities planned! Yeah, > empty nest syndrome, I love it!> > Good luck,> Sue in TN > > And just three days ago my son's psychiatrist advised me to start > > investigating establishing a guardianship for him once he's 18. I > > must have looked stunned. I mean, I know he has a lot of trouble > with > > various things, but he's also very bright, and all these years I've > > been hoping that I'd be able to make things work out for him. His > > psychiatrist asked me if I thought he could take care of himself in > > the world any time soon,> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 Sue,,,,,it is wonderful that Gage is playing football...what a great experience for him ....keep me posted as to how he does....my son wanted to but his bad knees prevented him....What a positive thing that he wanted to do it! Jan Janice Rushen Mom, Mentor, Wife, Teacher, Advocate, Accountant, Maid, Taxi, Shopper, Bulletin Board Artist Nanny, Crafter, Therapist, Friend, Sister, Aunt, Daughter, Grand-daughter, Personal Care Aide, Student, Believer, and Giver. From: carolynsuelowerycha ttanooga <sue@chasinglewisand clark.com>Subject: ( ) Re: new member intro/ Date: Monday, August 4, 2008, 10:13 AM Dear Sue,I know just how you feel, you are rocking along and things are going well and then you get "body slammed" with something like your psychiatrist' s pronouncement (and they have little idea of the impact of a statement like that)! Is it possible that you can pursue parallel tracks for him? Work on setting up possible guardianship, but at the same time pursue anything and everything that might let him live independently?Maybe the key is your words "anytime soon" doesn't mean never! Maybe at some point in his twenties or thirties he could be independent? Could he manage independence with a little help, a part time aid or a roommate? We have gone through SO much of this with our son and in our county, there is precious little of the services we needed...but other areas of the country offer so much more. It seems there is either 24 hours a day supervision and nursing care, which our DS, 23, does not need, or NOTHING. No in between, but I know there are a few programs and services that can help him and you with independence. That was and is absolutely my biggest fear that he would never be able to function on his own. He may still never be able to handle money or a budget with his math skills, but if we can find help in that area, he might be able to live on his own someday. Eighteen was really more like eight for our son (LOL), but he has managed now at 23, to go off to school in a somewhat supervised environment and is thriving. He is probably the oldest kid at this school, but he's doing it and loving it. As a matter of fact, he's put off coming home now for the upcoming three weeks because they he is having too much fun with all the weekend activities planned! Yeah, empty nest syndrome, I love it!Good luck,Sue in TN And just three days ago my son's psychiatrist advised me to start > investigating establishing a guardianship for him once he's 18. I > must have looked stunned. I mean, I know he has a lot of trouble with > various things, but he's also very bright, and all these years I've > been hoping that I'd be able to make things work out for him. His > psychiatrist asked me if I thought he could take care of himself in > the world any time soon, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 Hello , thanks for your reply. We have done alot, but the most effective approaches for my son have been the DAN! protocol, RDI, and Heilkunst. From your feedback I am encouraged that masgutova method will be added to my list. Good luck with your child, > > From: Ann Farris <ann@dyslexiadiscove ry.com> > Subject: RE: [childrenwithchalle nges] new member intro > childrenwithchallen gesgroups (DOT) com > Date: Friday, January 9, 2009, 8:42 AM > > > Hello : > > I have had great results with Masgutova Method and healing the underdeveloped reflexes which were impairing my ability to comprehend what I read etc. I had both dyslexia and hyperlexia. The key that made this change happen was Svetlana Masgutova ¢s comment several years ago that her studies show that some mothers of people with a learning challenges etc had emotional issues during pregnancy. My mother, fortunately, was brave enough to tell me this not long after I was diagnosed (at age 45). It wasn¢t until 15 years later when I met Svetlana that I was able to connect this information. As I had already done a great deal of inner emotional work I was able to combine the Masgutova Method with my emotional issues and correct the reflexes. > > I am attaching an article for you to read more details. > > Ann Farris > Author: The Other Side of Dyslexia > www.dyslexiadiscove ry.com > 415-552-6330 > > ________________________________ > > From:childrenwithchallen gesgroups (DOT) com [mailto: childrenwithchallen gesgroups (DOT) com ] On Behalf Of Koutsaris > Sent: Friday, January 09, 2009 7:06 AM > CHILDRENWITHCHALLEN GESGROUPS (DOT) COM > Subject: [childrenwithchalle nges] new member intro > > Hello, > my name is and I am a new member. Thank you for having me in the group. > I am a parent of a 10 y.o. boy with challenges. > With years of hard work and interventions, my son is recovered from ASD. Now we are dealing with challenges/developm ental delays, and have alot of catching up to do. > Our healing journey, and putting together info from a variety of disiplines (iridology, traditional chinese medecine, homeopathy, naturopathy, chiroprctic neurology, etc) has lead me to look closer at the prenatal period. This is where we are on our healing journey. > Somehow, my research has lead me to the Masgutova Method. > The more I learn, the more I feel like this is the next step for us. > I am here to learn and share experiences. > I am awaiting an appointment to get started, but being a physical therapist by profession, I am anxious to learn as well. Maybe some day, when my son is fine, I will be blessed with the opportunity to help others. > > > No virus found in this incoming message. > Checked by AVG - http://www.avg. com > Version: 8.0.176 / Virus Database: 270.10.5/1883 - Release Date: 1/8/2009 6:05 PM > Quote Link to comment Share on other sites More sharing options...
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