Guest guest Posted October 25, 1999 Report Share Posted October 25, 1999 Hi Harry, I hope your Doctor is a good Rheumatoligist. There are a lot of new drugs coming out right now and some, such as Enbrel, are supposed to have no effect on the liver. It isn't officially approved for PA yet but some folks are already on it and getting good results. Approval for PA is pending and should be in soon. Good luck. --- Marmot <marmot0@...> wrote: > Hi All > Id like to introduce myself to the list. > My name is Harry and Im a 45 yr old man who has had > PA since I was 23. > I have PA in every joint of my body, including my > jaw and my fingers look > like rotini macaroni. > My Doc will not give me MTX because 15 years of > Feldene use has taken away > half my liver function. I am now on Sulindac 200 mg > x2. It is really that I > have this group as I thought I was the only one with > this oddball condition. > Take care > Harry ===== C McCullough thelockhorns@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 Okay... not trying to be rude or anything (aspie here! lol) but your right about rural South Dakota, so that brings up the seemingly (at least to me) obvious question of, is moving possible, preferably to a school distrtict a bit more aspie friendly (maybe even with a special program for them). I know this brings up problems of moving away from a support group but sometimes thats the only way. As for homeschooling, 6th grade is a hard year. If he was a bit older it would be possible that you wouldn't always have to be there to assist him, even know if your husband and yourself could work opposite shifts it might still be possible. You might want to check out a homeschool group on to see how other parents do it while still working. There is also a question in my mind about the legality of expelling an asperger's kid for things probably related to his disorder. Have you consulted a lawyer about this? I am sure I might think of more, but thats my main 3 questions for now... cya From: moien@...Date: Sun, 29 Nov 2009 17:24:26 +0000Subject: ( ) Intro Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's...my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. Most recently, he has been "not participating" in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! Windows 7: It works the way you want. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 First you need to have a Manifestation Meeting...and see if his behavior was the result of his disability. If it was then he should not be in ISS or Expelled. And, you need to have a FBA ...functional behavioral assessment....they need to look at his strenghths /weaknesses, his immediate triggers, long term triggers and how he behaves and positive reinforcement. Negativity gets No Where.Everything must be positive. Also, your son is in 6th grade....when you start going on what type of positive reinforcements/incentives and thing that need to be worked on...he can be in the meeting...it affects him...and he is getting old enough to add his input. I feel if the kids know they are important in this process and add to it...such as what might be an incentive. ...my son know if he is getting fustrated, angry or upset...he can take his Ipod and go upstairs to guidance to listen to it and do some of his work. You might also want to consider getting him a aide or paraprofessional (like me...lol). No that is what I do. Also, for gym, they can give him an alernative...he doesn't need to sit there and do nothing...he/she can have ADAPTED GYM. Bring this up! hope this helps. Jan <font face="arial black" color="#bf00bf">Janice Rushen</font> <font face="Arial Black" color="#bf00bf"></font> & nbsp; <em><font face="Arial Black" color="#7f007f">"I will try to be open to all avenues of wisdom and hope"</font></em> From: G <fnofsports@...>Aspergers Treatment Sent: Sun, November 29, 2009 8:09:16 PMSubject: RE: ( ) Intro Okay... not trying to be rude or anything (aspie here! lol) but your right about rural South Dakota, so that brings up the seemingly (at least to me) obvious question of, is moving possible, preferably to a school distrtict a bit more aspie friendly (maybe even with a special program for them). I know this brings up problems of moving away from a support group but sometimes thats the only way. As for homeschooling, 6th grade is a hard year. If he was a bit older it would be possible that you wouldn't always have to be there to assist him, even know if your husband and yourself could work opposite shifts it might still be possible. You might want to check out a homeschool group on to see how other parents do it while still working. There is also a question in my mind about the legality of expelling an asperger's kid for things probably related to his disorder. Have you consulted a lawyer about this? I am sure I might think of more, but thats my main 3 questions for now... cya From: moien@...Date: Sun, 29 Nov 2009 17:24:26 +0000Subject: ( ) Intro Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's.. .my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. Most recently, he has been "not participating" in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! Windows 7: It works the way you want. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 Right now, moving is not an option. The economy here stinks, and finding new jobs in a state with one of the highest unemployment rates will be next to impossible. Also my question is that if he is expelled before his official diagnosis...do we have a leg to stand on? > > > Okay... not trying to be rude or anything (aspie here! lol) but your right about rural South Dakota, so that brings up the seemingly (at least to me) obvious question of, is moving possible, preferably to a school distrtict a bit more aspie friendly (maybe even with a special program for them). I know this brings up problems of moving away from a support group but sometimes thats the only way. > > > > As for homeschooling, 6th grade is a hard year. If he was a bit older it would be possible that you wouldn't always have to be there to assist him, even know if your husband and yourself could work opposite shifts it might still be possible. You might want to check out a homeschool group on to see how other parents do it while still working. > > > > There is also a question in my mind about the legality of expelling an asperger's kid for things probably related to his disorder. Have you consulted a lawyer about this? I am sure I might think of more, but thats my main 3 questions for now... cya > > > > > From: moien@... > Date: Sun, 29 Nov 2009 17:24:26 +0000 > Subject: ( ) Intro > > > > > > Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's...my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. > My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. > THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. > Most recently, he has been " not participating " in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. > He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. > So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! > I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! > > > > > > > _________________________________________________________________ > Windows 7: It works the way you want. Learn more. > http://www.microsoft.com/Windows/windows-7/default.aspx?ocid=PID24727::T:WLMTAGL\ :ON:WL:en-US:WWL_WIN_evergreen:112009v2 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2009 Report Share Posted November 29, 2009 Jan, how do i go about with this manifestation meeting? Is this at school? Who is involved? Since he is not yet dx with Asperger's I see them saying he's just naughty and oppositional (their current stance). About the para...I so incredibly wish. Again, rural south dakota pays minimum wage and we are 10 miles from any town with more than 500 people. In other words, nobody wants the job. No one is qualified. I have asked for a para, always they have refused. Even with an advocate involved. He used to do adaptive PE, they took that away as well. > > First you need to have a Manifestation Meeting...and see if his behavior was the result of his disability. If it was then he should not be in ISS or Expelled. And, you need to have a FBA ...functional behavioral assessment....they need to look at his strenghths /weaknesses, his immediate triggers, long term triggers and how he behaves and positive reinforcement. Negativity gets No Where.Everything must be positive. Also, your son is in 6th grade....when you start going on what type of positive reinforcements/incentives and thing that need to be worked on...he can be in the meeting...it affects him...and he is getting old enough to add his input. I feel if the kids know they are important in this process and add to it...such as what might be an incentive. ...my son know if he is getting fustrated, angry or upset...he can take his Ipod and go upstairs to guidance to listen to it and do some of his work. > > You might also want to consider getting him a aide or paraprofessional (like me...lol). No that is what I do.  > > Also, for gym, they can give him an alernative...he doesn't need to sit there and do nothing...he/she can have ADAPTED GYM. Bring this up! > > hope this helps. > Jan >  > <font face= " arial black " color= " #bf00bf " >Janice Rushen</font> > <font face= " Arial Black " color= " #bf00bf " ></font> & nbsp; > <em><font face= " Arial Black " color= " #7f007f " > " I will try to be open to all avenues of wisdom and hope " </font></em> > > > > > ________________________________ > From: G <fnofsports@...> > Aspergers Treatment > Sent: Sun, November 29, 2009 8:09:16 PM > Subject: RE: ( ) Intro > >  > Okay... not trying to be rude or anything (aspie here! lol) but your right about rural South Dakota, so that brings up the seemingly (at least to me) obvious question of, is moving possible, preferably to a school distrtict a bit more aspie friendly (maybe even with a special program for them). I know this brings up problems of moving away from a support group but sometimes thats the only way. >  > As for homeschooling, 6th grade is a hard year. If he was a bit older it would be possible that you wouldn't always have to be there to assist him, even know if your husband and yourself could work opposite shifts it might still be possible. You might want to check out a homeschool group on to see how other parents do it while still working. >  > There is also a question in my mind about the legality of expelling an asperger's kid for things probably related to his disorder. Have you consulted a lawyer about this? I am sure I might think of more, but thats my main 3 questions for now... cya >  > > ________________________________ > > From: moien@... > Date: Sun, 29 Nov 2009 17:24:26 +0000 > Subject: ( ) Intro > >  > Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's.. .my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. > My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. > THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. > Most recently, he has been " not participating " in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. > He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. > So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! > I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! > > > > > ________________________________ > Windows 7: It works the way you want. Learn more. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2009 Report Share Posted December 1, 2009 Hi,It is hard...I am a single mother with a child with aspergers and it is very hard to keep up with my job, the schools, etc.I had a mini stroke two weeks ago and other two years ago. I blame the pressure of my child, the job and the schools as caused for the mini stroke.Even without school problem still keeping a job when you have a child with aspergers can be a challenge. The suggestion of finishing your B.S online is an excellent idea. ( ) Intro Date: Sunday, November 29, 2009, 11:24 AM Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's.. .my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. Most recently, he has been "not participating" in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2009 Report Share Posted December 1, 2009 From: "tfitzge134@..." <tfitzge134@...> Sent: Tue, December 1, 2009 11:23:17 AMSubject: Re: ( ) Intro Hi,It is hard...I am a single mother with a child with aspergers and it is very hard to keep up with my job, the schools, etc.I had a mini stroke two weeks ago and other two years ago. I blame the pressure of my child, the job and the schools as caused for the mini stroke.Even without school problem still keeping a job when you have a child with aspergers can be a challenge. The suggestion of finishing your B.S online is an excellent idea. ( ) Intro Date: Sunday, November 29, 2009, 11:24 AM Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's.. .my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. Most recently, he has been "not participating" in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2009 Report Share Posted December 1, 2009 Maybe you should rethink the " refusing to participate " . I heard that phrase about my son, but didn't accept it anymore when I finally realized that he wasn't making a conscious choice to not join in - his brain was making him shut down as a coping mechanism because he was just overwhelmed and stressed. He would do great on the tests, but his grades would suffer because he wouldn't do worksheets (can't process forms well), wouldn't do homework (he needed written instructions, couldn't follow verbal instructions or cryptic notes on the white board, was tired of doing work that was too easy for him). When we moved him to a different school where the proper accommodations were put in place and the teachers followed them 100% of the time - he actually started turning in all of his homework, all of the time. The meltdowns at home stopped, too. So why aren't his teachers following the IEP? Sounds like it's time to add more accommodations to the IEP. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 Oh I know why he's " not participating " , he shuts down like that at home too sometimes. That is just what they told me. I would love to get him in a different school, and I am asking for an aide. We see him shutting down when there are student teachers or subs in the room. They don't know how to handle him so immediately call the principal. This is how his school works: in 3-7th grade they stay in the same classroom but have a different teacher for each subject. It works ok, he's getting better at transitions and at least he doesn't have the same " bad " teachers all day (those that don't follow his IEP). > > Maybe you should rethink the " refusing to participate " . I heard that phrase about my son, but didn't accept it anymore when I finally realized that he wasn't making a conscious choice to not join in - his brain was making him shut down as a coping mechanism because he was just overwhelmed and stressed. He would do great on the tests, but his grades would suffer because he wouldn't do worksheets (can't process forms well), wouldn't do homework (he needed written instructions, couldn't follow verbal instructions or cryptic notes on the white board, was tired of doing work that was too easy for him). When we moved him to a different school where the proper accommodations were put in place and the teachers followed them 100% of the time - he actually started turning in all of his homework, all of the time. The meltdowns at home stopped, too. > > So why aren't his teachers following the IEP? Sounds like it's time to add more accommodations to the IEP. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2009 Report Share Posted December 2, 2009 I already do most of my classes online. But I also work 2 part time jobs...hubby took a 50% cut in pay and loss of hours. I went from a full time job to two part time jobs that don't even come close to making up for my full time job layoff. With all the medical bills we have, I have to do this. > > > From: <moien@...> > Subject: ( ) Intro > > Date: Sunday, November 29, 2009, 11:24 AM > > >  > > > > Hello, I'm hoping I am in the right place, and can find some advice here. I have an 11 year old (6th grade) that is being tested for Asperger's in February. He is a true vision of Asperger's.. .my sister has 2 Aspie boys, and all three boys are clones of one another behaviorally. > My son lives with me, my husband (his stepdad) and my older daughter (13). He rarely sees his dad now, but did live with his dad/stepmom last school year, and did ok. He will NEVER go back to live there due to the horrid environment we found him living in. > THis year quite simply, has been hell at school. We just had his 3 year eval for IEP. He has been receiving ST since age 4, his diagnoses are/were ADHD, SPD, Depression, Anxiety, and mild CP. I finally got them to bring back his OT at school, who initially was there for handwriting. That has done no good at all. Her focus now will be keyboarding. His SPED teacher has some fidgets and other OT sensory things, but is obviously not trained in that nor uses them properly. He also feels he is bullied all the time, part of it is true, but part of it is his social perceptions. > Most recently, he has been " not participating " in class. He has gone from A's and B's to D's and F's. He is on his 4th day of in school suspension tomorrow for not participating in class. They are aiming for expulsion, which is soon if not this week if he has another ISS. > He has a behavior plan but doesn't react to rewards anymore. If he gets expelled, I don't know what I will do. And because of his IEP, we can not open enroll him in other school districts. I have tried. > So the obvious answer is to homeschool him. Now I'm not being selfish but in 6 months I will have completed my bachelor's degree. In a year from now I will have $600/month student loan payments. I HAVE to work! Either that or my children will starve! > I'm lost as to what to do. Rural SOuth Dakota is not conducive to children with disabilities, and I'm frustrated beyond belief. HELP! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2009 Report Share Posted December 4, 2009 I just wanted to say hello to everyone who is posting and introducing themselves... Thank you all for sharing. It is impossible to express how much it helps to read the experiences of others who can relate to our own struggles. I am very new to this board and new to the idea of asperger's, but I thank each of you for being here and open to discussing all these topics. I feel like we are at some kind of intersection of life, between crisis in our lives and the awesome sharing, caring, searching, loving hearts of parents trying evrything to find answers, solutions, help, a shoulder to cry on... Thanks especially to those who inject humor, I truly believe we all need to laugh as much as possible... Thanks to Mark for the comment about having a father/son talk about why girls are afraid of him. I had to laugh. I really appreciate the humor... God bless. > > Hi! > I'm Claudette. Married and sahm of 4 children. Two with Autism. Our > second daughter now 9 years old in 3rd grade diagnosed May 2002 at 4 > 1/2 years old with High Functioning Autism and our first son now 7 > years old in 1st grade diagnosed Dec 2003 at 4 1/2 years old with > HFA too but we and the school suspect he's more Aspergers. > > Some days all I can say about their treatment at this point is I'm > grateful. The school has been wonderful with them both and feel like > I couldn't ask for more. He has a pretty well rounded educational > plan. They recieve OT, ABA, speech, social skills therapy,... I'm > probably missing one, give or take. > > I've read several others descriptions of what they're facing with > their children. It's sometimes nice to hear that someone out there > understands what we're going through. > > They're both different like night and day most times. I find that > interesting. DD is more emotional and has significant delays in > reading comprehension. DS is outgoing with ADHD, excels in all his > subjects and tends to go to extremes with many things. > > So anyway, thanks for having this group available. I'm sure it helps > many families. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Hi Cris! Have you read much about any of those possible diagnoses? If so, any you are leaning towards, as you know her best? I have a 20 yr old son with Aspergers and with OCD. His OCD began in 6th grade, though he had his little " quirks " before that. He's also quiet, thoughtful, good student, nice person, no behaviors ever. I know I like to have a diagnosis, or at least know what *I* feel should be the diagnosis, so I know what approach to take when working on issues. And can help with school if an IEP or 504 Plan is needed. Her voices - does seem to indicate another dx besides OCD or Aspergers. Although bipolar can sometimes show that way from what I've read but nothing you've said about her seems to point towards bipolar. Hopefully her new med will help stop them. I know occasionally in the OCD group I belong to, voices have some up but it's not part of the OCD; not sure what, if any, additional dx was given to those children/teens. Since she wasn't on any meds already, can't be a med causing the voices (which can happen). So - do you feel both Aspergers and OCD fit? Aspergers can have some OC type behaviors/obsessions too, but there is the... " real OCD " too that isn't part of, is separate from Aspergers. > > Hi, > > My 15 year old daughter may have Asperger's syndrome (among other things). We are waiting for a neuropsychological testing appointment. > > I have read only a few posts but would really appreciate if anyone can let me know whether this is an appropriate list or point me in Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2009 Report Share Posted December 12, 2009 Thanks so much for your response. My thoughts on my kid - Aspergers: many of my own behaviors fit, and I have been told this by others. Difficult social problems in school, very lonely, very smart. Even now I learn things with ease, master a hobby, a language, a musical instrument, then move on to the next one. Always taking classes. Excelled in software engineering, reached very high level of expertise before I got tired of it. Trained self to make eye contact, speak to others. Now as adult have three good friends, good relationships with family members. The reason I mention myself is that my daughter reminds me so much of myself, and always has. I had friends as a child and she has friends, though not the " popular " crowd. These are not " best friend " relationships that last. She doesn't use the phone. At summer camp she keeps to herself or finds a single quirky friend, usually much more outgoing than she. She has had to train herself to make eye contact (she figured this out herself). She has started different projects at home, writing web pages, short stories, etc. but does not finish very much. I did not either as a child. She doesn't seem to hyperfocus, which is something I have heard about kids with Aspergers - learning all there is to know about baseball, spiders, or some such thing. She doesn't get carried away by specific interests, though maybe Pokemon would qualify. I didn't do this so much as a child either. School is not a problem. She goes to an alternative school - not for special needs, just a sort of Summerhill model - and has never had any significant problems there. She is well liked by the staff and is treated well by the other students. OCD: She rubs the palm of one hand repeatedly once in a while. Nothing looks like it's particularly painful compulsive behavior. I have a trace of OCD, but once I learned about it I could let go some obsessive behaviors and indulge the harmless ones (mostly having to do with hanging up the clothes the " right " way). I like it because it helps me get things done, and I usually know when to stop. Probably in my case it should not be called a " disorder " because it does not impair my functioning. Rather, it seems to enhance it. My father-in-law was a great psychiatrist who specialized in OCD. He said a mild case of OCD was a boon to people with ADHD. We all have ADHD in this family. No medication right now is used by any of us. Myself, husband, and daughter in question have been diagnosed. An older stepson has some unspecified learning disorder, and siblings and their kids seem to have ADHD too. Some have been diagnosed. That much seems clear. However as I said, my daughter does not have problems at school so there has not been any need for medication or intervention. My husband in the past has responded well to medication, mastered some organizational difficulties and stopped taking it. Though to be honest, prescription stimulants might enhance a person's performance whether or not they have ADHD. Bipolar: she has never had anything that looks like mania or hypomania. She is easygoing and has very regular habits, has slept the same amount every night since about 3 months old. However I don't know much about bipolar disorder in kids. I know a few adults who have bipolar disorder, both those who responsibly control it and those who do not. Psychosis: she does not have the most obvious indications. No family history, no drug use, and her functionality seems to be improving rather than deteriorating. All conversations I have had with her, all the ones my husband has had with her, the ones she has with her sister, grandparents, etc. throughout her life all make sense. There is nothing odd about her communication in terms of conceptuality. However the voices are upsetting to her and tell her to do things, and if she does not obey them they continue talking, sounding angry. Not every day. The neurologist we saw, who seemed very good (Boston Children's Hospital), said that OCD and Asperger's could have voices involved. But we only saw her to rule out temporal lobe epilepsy, which she doesn't seem to have. So we will not continue with the neurologist. Before the psychiatrist spoke to her, she seemed like she thought Asperger's was likely, just from listening to our family history. But after she talked to her about the voices, she didn't want to say anything for sure. I wonder if it is something that will get worse. One problem is that since all this has come out, she has stopped talking to me about her symptoms. She wasn't talking about them much before, but now when I ask her about them she gets upset and tells me she doesn't want to talk about it. She gets along very well with the psychiatrist though, and will talk to my husband sometimes. It worries me - the psychiatrist seems either hostile or defensive towards me. I can live with that if she is doing the right thing for my daughter, but I have no way of knowing other than that she has prescribed an anti-psychotic medication and that my daughter likes her. She seems fine to me, has been doing Christmas shopping and making some gifts, smiling. Anyway this is all still up in the air. We will get neuropsych testing including a projective test, so they can tell whether her thinking is disordered. It does not seem that way to me, but who am I to judge? I am her mother and have always thought she walks on water. Thanks again for your reply. I am reading the emails as they go by, and my heart goes out to all who have to deal with problems of the traditional school environments. School was an unmitigated misery for me, and I suffered tremendously, maybe even to this day. However that was another day and age, the 1960s. Cris On Dec 12, 2009, at 8:11 PM, wrote: > Hi Cris! Have you read much about any of those possible diagnoses? If > so, any you are leaning towards, as you know her best? > > ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi Cris, another parent shared some personal experience about their child and I sent you an email directly, so look for it. Wasn't anything TOO personal, or rather identifying, in it but just wasn't sure about putting it in a group post. Keep us updated on what you find out! > > > > Thanks so much for your response. > > My thoughts on my kid - > > Aspergers: many of my own behaviors fit, and I have been told this by > others. Difficult social problems in school, very lonely, very smart. > Even now I learn things with ease, master a hobby, a language, a > musical instrument, then move on to the next one. Always taking > classes. Excelled in software engineering, reached very high level of > expertise before I got tired of it. Trained self to make eye contact, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Hi - JoAnn and welcome to the group. I have 3 kids and my oldest at 19 as AS. I can't imagine how you can handle the demands of 6 kids, especially when 3 need extra care. Helping my 19-year-old make the transition to being an adult is my next big project and so I'm looking for others working on the same. He had zero support from the schools and so hit bottem around 14. I was able to move him to a private school for AS kids, where he thrived, but now high school is over and he no longer sees his high school buddies. He's doing OK as a part-time student at community college, but he still is so far behind his peers. Am looking forward to hearing from you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2010 Report Share Posted March 15, 2010 Hi , Have you looked into getting transitional services from your County ? > From: <tamaoki_s@...> > Subject: ( ) Re: Intro > > Date: Monday, March 15, 2010, 12:05 PM > Hi - JoAnn and welcome to the group. > I have 3 kids and my oldest at 19 as AS. I can't imagine how > you can handle the demands of 6 kids, especially when 3 need > extra care. Helping my 19-year-old make the transition to > being an adult is my next big project and so I'm looking for > others working on the same. He had zero support from the > schools and so hit bottem around 14. I was able to move him > to a private school for AS kids, where he thrived, but now > high school is over and he no longer sees his high school > buddies. He's doing OK as a part-time student at community > college, but he still is so far behind his peers. Am looking > forward to hearing from you. > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2010 Report Share Posted September 21, 2010 Hello My name is Krista Clyburn and I am a Mom of four children. My oldest who is 17 was just diagnosed with Asperger's after being wrongly diagnosed with ADHD since first grade. I was always aware that my son didn't seem like a typical ADHD child and more was going on. I could not get any of the doctors to listen to me. They said he was too social to be an Aspie. His social cues are way off and he doesn't understand or read anyone else's. But he tries to be social and wants to have friends. So here we sit after 12 years believing that something more was going on with him, which ended up exactly what we thought. After two months of extensive testing by a new doctor who we love, finally we have answers. As relieved as I am, I am also hurting because I am fearful of this new arena. My son is getting such a late start and has suffered so much over the years. I struggle with guilt for not having more patience with him. If only I had known 12 years ago....... I am seeking any and all information on what worked well with your child. What ever advice you have to offer, different agencies we need to look at......I would be very appreciative. Is anyone in the south central PA area? Do you know of any great support groups for parents? Do you know of any therapy classes that you can rave about? Thanks so much and I look forward to reading more from this group. ~Krista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Hi Krista and Cathleen, My 11 year old son was recently diagnosed with Aspergers also, and had an ADHD diagnosis prior to that. He started having a lot of Obsessive type behaviors and got into trouble with the law for making prank phone calls on his cellphone on the schoolbus every day on the way to and from school. We got a call from the county detective, and juvenile probation actually handled it as an informal adjustment where he paid restitution and did community service. He didn't understand why this was wrong or why he even did it. This was a felony-so we were lucky it was handled that way. This was all before his AS dx. We knew that there was more than ADHD going on there, and we were fortunate enough to find a facility to help us and to diagnose him. It is located in town-you can google ARCH of Lehigh Valley. They are wonderful there, and he also attends their social skills groups. They have many programs and help available, and actually have a genuine concern for the children. They are the first and only ones we have encountered who actually care! We travel from Northeastern PA on Saturdays to attend these groups-I only wished we lived closer so we could do the afterschool program and summer camps. We try to take one day at a time as we deal with all of the issues we face with him, but wouldn't trade him for the world. Hang in there. > > Hi Krista, welcome to the group. It's great though that you didn't give up. It's > not too late to get help. Myson is 7 also diagnosed with ADHD at age 5, but > last year we noticed, same with you, that there is more going on. > > So far I am in the investigative stages. I need to get a child neuropsychologist > to run some test on my son. What were the signs that you noticed that made you > think it wasn't only ADHD? Did Asperger's ever cross your mind? > > Thanks, > > cathleen > >  > > > > ________________________________ > From: K Clyburn <krisclyburn@...> > > Sent: Tue, September 21, 2010 7:10:12 PM > Subject: ( ) Intro > >  > Hello > My name is Krista Clyburn and I am a Mom of four children. My oldest who is 17 > was just diagnosed with Asperger's after being wrongly diagnosed with ADHD since > first grade. > > > I was always aware that my son didn't seem like a typical ADHD child and more > was going on. I could not get any of the doctors to listen to me. > > > They said he was too social to be an Aspie. His social cues are way off and he > doesn't understand or read anyone else's. But he tries to be social and wants to > have friends. > > So here we sit after 12 years believing that something more was going on with > him, which ended up exactly what we thought. After two months of extensive > testing by a new doctor who we love, finally we have answers. > > As relieved as I am, I am also hurting because I am fearful of this new arena. > My son is getting such a late start and has suffered so much over the years. I > struggle with guilt for not having more patience with him. If only I had known > 12 years ago....... > > I am seeking any and all information on what worked well with your child. What > ever advice you have to offer, different agencies we need to look at......I > would be very appreciative. > > Is anyone in the south central PA area? Do you know of any great support groups > for parents? Do you know of any therapy classes that you can rave about? > > Thanks so much and I look forward to reading more from this group. > ~Krista > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 Hi to and Carolyn,Welcome to group . I am fairly new here myself. You have joined a great group of parents with lots of info and support! I had to get a professional diagnosis via a parapsychologist before the school district here in Arkansas would do any type of testing for my daughter. (12 y.o.) She was in speech therapy and that was the extent of her services. Now, she is doing beautifully in school and loving it becoming more confident as well! You might want to check out the IDEA Laws and Laws which are the Federal Guide Lines for kids with specific learning differences. Just google these! I recommend to all you parents watch the movie Temple Grandin. My daughter is watching it now and has it recorded requesting all her siblings watch it! I am excited for her for she is starting to educate herself about A.S. I think Temple Grandin is becoming her new obsession! (now to get Maeci to read her books) Happy New Year to all! Elinor mom to Maeci From: Carolyn Weisbard <ccweisbard@...> Sent: Tue, December 28, 2010 8:16:25 AMSubject: Re: ( ) Intro Hi , my name is Carolyn and I live in North Dallas as well. I am almost afraid to ask, but what school district are you in?? We are in the middle of a battle with LEISD (Little Elm). I have 2 daughters who are nearly 8 (NT) and nearly 4 (whom we believe has AS). We are fighting for services, but it isn't looking good at this point....Carolyn W.From: thorpe.family <thorpe.family@...> Sent: Mon, December 27, 2010 9:27:44 PMSubject: ( ) Intro Hi! My name is and I live in North Dallas. I have two children. My oldest is 10 and she is NT, my youngest just turned 8 and was diagnosed in March of 2010 after being misdiagnosed. We've has so much testing and have even gone so far as to sue the school district to get services for our son (we won out in mediation). I am just looking to find groups for support and also to have a sounding board on those days that I want to pull my hair out or have a pity party. Although few and far between it is always helpful to have an ear that can understand your challenges. Glad to have found this group! Quote Link to comment Share on other sites More sharing options...
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