Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Hi Colleen, Welcome to our group. NC means no contact. When you joined, you may have received one or two emails, and in one of them is a list of terminology that we use on this board. If you go to the actual web site, there is a " file " section in the table of contents. You can find the list of abbreviations there too. It can be overwhelming to find out that a parent has BPD. There is a great deal to learn, to assimilate, and then to understand how it all affected us in our formative years. Please give yourself time to absorb it all - could take a year to just do that! Don't pressure yourself to do anything that you are not comfortable doing. Over enough time, it will fall into place. Take care, Sylvia > > Hi > > I'm Colleen > > HAving read a few books on BPD, I found my mother the witch. > > I am the bad child. > > We do not speak or write for 3 years and I am 500 miles away. > > I am waking up, in a safe loving relationship (first one). > > It is rather frightening. To realize i have been disassociating much of my life, and > therefore have not developed skills necessary to navigate this world of relationship > fairly and responsibly. > > I am having insecurity and anxiety .fear and feelings of abandonment when my poor > dh leaves the room. This is one example. > > and now anger, which has never been part of my repitoire, > > I feel like my 3 year old at times. > > determined to climb out of this state. > > open for advice. > > TIA And whats > > nc? > > don't get some abbreviations > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Thanks for the welcome and the ...warning. Sylvia. Ive always known she's crazy..........just had not read the BOD stuff yet. Dh is a doctor so he's worried I am " diagnosing " . LOL ...least of MY worries !!! This 1/2 of my journey. The next 46 years are about ME, not Nada. Dh and myself are left to live with the fleas!! I'm at a place in my life where I have time and energy to " work " on some of this. Mostly putting out fires. I'm hoping to head back to my T this week, as more crap I need to clear has been revealed. Thanks again. Enjoying this list already. Thanks everyone., Colleen > Hi Colleen, > > Welcome to our group. NC means no contact. When you joined, you > may have received one or two emails, and in one of them is a list of > terminology that we use on this board. If you go to the actual web > site, there is a " file " section in the table of contents. You can > find the list of abbreviations there too. > > It can be overwhelming to find out that a parent has BPD. There is > a great deal to learn, to assimilate, and then to understand how it > all affected us in our formative years. Please give yourself time > to absorb it all - could take a year to just do that! Don't > pressure yourself to do anything that you are not comfortable > doing. Over enough time, it will fall into place. > > Take care, > > Sylvia > > > > > > Hi > > > > I'm Colleen > > > > HAving read a few books on BPD, I found my mother the witch. > > > > I am the bad child. > > > > We do not speak or write for 3 years and I am 500 miles away. > > > > I am waking up, in a safe loving relationship (first one). > > > > It is rather frightening. To realize i have been disassociating > much of my life, and > > therefore have not developed skills necessary to navigate this > world of relationship > > fairly and responsibly. > > > > I am having insecurity and anxiety .fear and feelings of > abandonment when my poor > > dh leaves the room. This is one example. > > > > and now anger, which has never been part of my repitoire, > > > > I feel like my 3 year old at times. > > > > determined to climb out of this state. > > > > open for advice. > > > > TIA And whats > > > > nc? > > > > don't get some abbreviations > > > > > > > > > Problems? Ask our friendly List Manager for help at > @.... SEND HER ANY POSTS THAT CONCERN YOU; DO NOT > Respond ON THE GROUP. > > To order the KO bible " Stop Walking on Eggshells, " call 888-35-SHELL > () for your copy. We also refer to “Understanding the > Borderline Mother” (Lawson) and “Surviving the Borderline Parent,” > (Roth) which you can find at any bookstore. Welcome to the WTO > community! > > From Randi Kreger, Owner BPDCentral, WTO Online Community and author > SWOE and the SWOE Workbook. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 I understand the concern about diagnosing - but - here is my slant on it. I believe that a KO (Kid of a borderline parent) is in a very unique position that enables them to diagnose a parent as BP. After all, it was the KO who spent his/her childhood in the madness that a BP creates, and we tried to make sense out of it. Most of us have had that ah ha moment when we read the diagnosis criteria - or one of the lay books about BPD. Ah ha - so that is the problem, it really isn't me at all - my parent has BPD! Sylvia > > Thanks for the welcome and the ...warning. Sylvia. > > Ive always known she's crazy..........just had not read the BOD stuff > yet. > > Dh is a doctor so he's worried I am " diagnosing " . LOL ...least of MY > worries !!! > >..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Why do schools work so hard on blowing bubbles? Really? My son is 15 and I think he spent many hours a day when he was 5 and 6 learning to do just that. Don't count on the schools teaching your child much. If you want ABA the research shows you need many many hours of ABA a week. Schools will not do that. You'll need to do that yourself after school. And, ABA is successful for only 50% of persons who do it or there abouts. I'd look into RPM at HALO here in Austin.www.halo-soma.com Get the manual on line read about the method you can learn this yourself and teach your son after he comes home from school learning to blow bubbles or if your really lucky sort letters into alphabet envelopes. By the time my son was in a 5th grade Autism unit he was still flopping on the floor and not doing the folder jobs and the small amount of ABA he was getting they kept repeating the same lesson again and again because they thought he couldn't add 2+3. It turns out by using RPM we learned he actually could do times tables it only took two lessons to teach him. He is very bright....we had no idea because his verbal skills are so low. There is a RPM tutor who lives in Dallas that both Haven and I use for RPM tutoring. She is amazing and reasonably priced and she can show you how to get started even if you can't afford her every week. But if there is anyway you can afford it you really need to make the trip to Austin to see Soma at HALO. She'll show you things you never thought were possible. She invented RPM to teach her son Tito who is nonverbal but has written several books. Soma is an inspiration and a mentor to parents all over the world. She also believes that you can learn to teach your child and I have many tutors who have learned her method and my son even uses RPM at school now in the 9th grade. He's fully included and a A student. He still uses very little spoken language. Let me know if you'd like s email address I think she has room for one more student. (If Haven will let her go I think she has plans on adopting her.... Trina Hi all. I live in Mansfield and I have a non verbal 8 year old autistic son. I can sure sympathize with y'all on how hard it is to have a child like ours. We did try a few diets and supplements years ago, but never saw any improvements. It's odd how one thing will work wonders for one child, but does nothing for the other. He doesn't eat a lot of processed food or dairy. He loves fresh fruit and cherry tomatoes. Since he's been in school, we have seen a lot of improvements. I was so happy because he finally learned how to blow bubbles. I remember the ST and OT trying this for years! Now, if you hold a bubble wand in front of him and tell him to blow bubbles, he will. He is our only child. For any of you who live in the DFW area, what are the best schools for kids like ours? Since my husband lost his job and finally found one at a lot lesser pay, there is a good chance we might just have to let them foreclose on our house if we don't get a loan modification. Another question I have is about renting an apartment. My son makes lots and lots of noise at all hours of day and night. Can we get evicted because of this? One of the choices we were thinking about was just renting a mobile home so neighbors wouldn't complain. So far we have been happy with the school here, but if we had to move I'd like a decent school for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 I have two ideas for you also in the Dallas area. Although we live in the Houston area. I traveled to Brain Balance in Plano for several months with my son recently. http://www.brainbalancecenters.com/ is the director and I trust her. Machuga came to our hotel and worked with our son while we were doing Brain Balance. We had been running a Son-Rise playroom for 3 years at home. She is in the Dallas area so I had her meet me at the hotel to continue our goals. Lots of ways to go about this. How I sorted out who to trust was to go with my instincts. Every kid is different and there are many ways. Son-Rise is hard to do, but it's all hard...I found it to be the most loving way to reach a child so the learning can begin. http://www.autismtreatmentcenter.org/ Public schools mean well. They just don't know what to do. They are researching too what approaches to take, but no one will find help faster than a mom who is actually in the situation. Schools are trying to " control the situation. " They believe our kids have to be affected lifelong and that we have to accept this. They really believe this and mean well. All the best! > > > > > > > Hi all. I live in Mansfield and I have a non verbal 8 year old autistic > > son. I can sure sympathize with y'all on how hard it is to have a child > > like ours. We did try a few diets and supplements years ago, but never saw > > any improvements. It's odd how one thing will work wonders for one child, > > but does nothing for the other. He doesn't eat a lot of processed food or > > dairy. He loves fresh fruit and cherry tomatoes. Since he's been in school, > > we have seen a lot of improvements. I was so happy because he finally > > learned how to blow bubbles. I remember the ST and OT trying this for > > years! Now, if you hold a bubble wand in front of him and tell him to blow > > bubbles, he will. He is our only child. For any of you who live in the DFW > > area, what are the best schools for kids like ours? Since my husband lost > > his job and finally found one at a lot lesser pay, there is a good chance we > > might just have to let them foreclose on our house if we don't get a loan > > modification. Another question I have is about renting an apartment. My > > son makes lots and lots of noise at all hours of day and night. Can we get > > evicted because of this? One of the choices we were thinking about was just > > renting a mobile home so neighbors wouldn't complain. So far we have been > > happy with the school here, but if we had to move I'd like a decent school > > for him. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Ah, yes, I remember the hours and days they spent teaching him to blow bubbles -- WE finally succeeded in that, but our goal was so he could learn to blow out the candles on his birthday cake.Unfortunately, you cannot depend on Texas schools to teach your son. I so totally understand the financial part of it. Our son developed myriad health problems upon regression, so our once comfortable lifestyle went in the toilet, and we are just a paycheck to paycheck family here. There are some very good private schools in the DFW area, but they cost $$$$$$$! In addition to that, most are toward the north and into Plano. I did drive to Plano for three summers for ESY, but then my son got his speech back and really let me know what he thought of that long drive everyday. I finally had two choices: leave him in public where the definition of " appropriate " is " crap, " or do whatever I had to do which was home school him --we couldn't afford private, and the way the system is set up if a parent wants the school to pay is that you have to enroll the child in private first and then show disparity between progress and then maybe after seven years in court you might get reimbursed. There is also the possibility of having the school pay for private in the home, but it takes a lot of advocacy, amassing a paper trail of evidence, hiring lawyers etc....and there are no guarantees of reimbursement going this route either. We decided to home school. It has been the best decision we ever made. He has made tons of progress since September. We have been lucky in some respects. Due to his health issues, he qualified for MDCP and a medicaid waiver. Through this program, we get " respite " hours and the program covers PT, OT, and speech therapy. So that took care of part of our " team. " Then as Trina mentioned, we had the unbelievable good fortune (Divine Providence) for to move to Dallas and do RPM tutoring. I can't wait for the day to hug Trina in person for sending our way! She is a phenomenal tutor! Her rapport with our son is great. has been working with our son twice a week, but this semester, we will increase to three times a week. On the days he does not see , I handle the academics, as I was a teacher for fifteen years. But I am learning how to do RPM. I am not as comfortable with it as , but through studying the book and watching do it, I am getting better at it. If I thought that the school here were better, I'd offer a rental trailer house to you for rent (my mom moved out of it), but moving here would not make things better school wise. is unbelievably reasonable if you can scrape up enough to have your child see her. Have you taken your child to see a DAN physician or other physician like Dr. to see where some deficiencies may lie? You said you had done the diet several years ago. How long did you do it? What did you eliminate? I know kids differ, but most of the kids I have seen that do better are on some kind of special diet long-term. There are tests that can be done to determine which diet may be best for your child. Have you done a DDI hair test to see if heavy metals are an issue? What therapies is your child getting? This can be a lonely road and it helps to contact with other moms like us. You may want to consider home-school and learn about ABA and RPM so your son can be learning the things he needs to learn to survive in the world. Just because he can't talk does not mean he cannot learn to read, write, and work math. It is unfair to deny a child this right just because he lacks verbal ability. this is one of the major prejudices the public sector commits. If you would like to meet us at 's in Dallas and observe an RPM session with my son, I can check with to see if it would be okay. If you would like to come out to our farm sometime and talk. Let me know. I have an extensive autism library and often loan books to parents. I have the RPM book. My son was moderate/severe at regression and lost all speech. the things you describe with your son were typical of my son. It sounds like your son does not sleep through the night. Have you tried giving melatonin? The constant verbal " stims " may be due to yeast, and there are some very natural things you can give him to control yeast. You are right in keeping him away from sugar, and try to get him completely off processed foods. We are here to help and support you. I wish I had better options for you regarding education, but unfortunately, if your child remains in the public school, chances are he is not going to be employable nor independent by age twenty-one. It is just the sad state of education for children with autism in Texas. If parents have money, then they can afford places like Vanguard and Focus on the Future. Most parents can't afford these schools and so must decide between an education that will prepare their child for either life in an institution or work in a supervised workshop for the mentally challenged --OR home school and give your child an appropriate education that prepares him for post-secondary education, employment, and independent living. Trina's son is back in public, I believe, and with RPM and being able to get her son's school on board, he is doing remarkable work. Hopefully, more schools will get on board with things like ABA and RPM, but I am not holding my breath that they will do it in time to help this generation of children. I truly believe they don't think our children can learn and become valuable, tax paying members of society, so it is up to us --the parents to show that they are wrong. Regarding the apartment and your child's verbal stimming -- I do think you would run into problems there. If the neighbors did continually complain about the noise, you might be asked to move. I don't know if that would be legal, but they still might cause you trouble. We live out in the country, and way back when, my son used to scream horrendously due to severe gut pain (before we put him on the diet), and we had one neighbor who thought we mistreated our son!!However, You might need to consult with a DAN! but what helped my son with this is controlling yeast in the gut for diminishing stims and adding half a milligram of melatonin thirty minutes before bed so that he would fall asleep and sleep through the night. A good night's sleep is vital for brain development as well as your sanity! We had about three years where we rarely got more than three hours of sleep at a time. My son is now high functioning but still has delays and health issues. He regained all forms of speech. He did lose all stimming, but it came back after doing IV chelation --I would not recommend this form of chelation. Don't hesitate to contact us with questions. Haven Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 ,I wish my experience had been that they " mean well, " but I haven't seen that. I'm sure every school is different. In the schools I've been to regarding advocacy, I see a lot of manipulation to save money and throw these kids away. I see money getting thrown at meaningless areas like football and ag programs and little thrown toward teacher and aide training. You can't mean well if you put thousands of dollars towards frivolous programs and then tell parents your district doesn't have the money for training. It makes no sense to me. Personally, in the situation we are in with the autism epidemic, the schools are going to have to take a long hard look at these programs which do nothing to allow our students to compete against the scholars of other nations who place high priority on academics. Many high schools in the northern states do not have football and put their money to academics and therefore rank higher in education than Texas --where football is the be all and end all of everything. Yet, few schools produce professional ball players. Abrahan Lincoln said that America cannot be destroyed from outside, but that we will do it to ourselves. One need only to look at where we place our high priorities and then consider WHO owns most of the business real estate in this country. I digress to consider ALL children. Texas has done little in the past decade to address its thirty-eighth place spot in education overall. Let alone address the travesty of remaining in forty-ninth for special needs children. Even as a teacher years ago, I saw myriad teachers who paid little if any attention to accommodations and " Content Mastery " objectives. There is this pervasive sentiment to put " It " on paper and then forget it and " Just don't fail them. " How is this learning? How is this demonstrating " meaning well? " You can tell this by having parents push for accountability. Just ask for tracking sheets and ask a special ed teacher to inform you, the parent, of which specific IEP objective was worked on that week. See what happens. ALL parents should be keeping all their child's tangible work and tests and matching each question to IEP objectives to see if they mesh with the grades given. My guess is that if more and more parents would do this they will find that the work does not match the IEP. They would find that there is little to no benchmark testing of objectives to see if the IEP is working for the child. Meaning well is of little value to a child who is headed to life in an institution if he doesn't get to independence, and it will be cold comfort for parents to parents who may leave this earth with no one to look after their child. Are there some children who absolutely can't get there? Sure, but there are far too many children with autism who won't get there simply because schools say they mean well but are just too damn entrenched in their ignorance of this disorder to learn to do what is appropriate. I'm not yelling at you --please don't think so, but I see rather an ill use of funds and no real desire to educate these kids. I see abject disbelief in the ability of these children to learn academics. I see them being written off as soon as the label is placed. If they mean so well, how come they send there teachers to seminars once a year where district lawyers educate them on how to manipulate special ed parents? I know the games they play because I make a point to attend these. they tell them what to say and how to say it, and they teach them how to get around providing what is appropriate. They teach them how to get the parents to agree to the cheapest IEP and pass is off as a " Cadillac. " How many parents are going to be able to recognize that Cadillac as one that is half buried at the Cadillac Ranch? It is my understanding that these schools are allowed to put the special ed funds into the " general fund. " How then are parents supposed to know that the funds are being used appropriately? I would like to see special ed funds remain in its own account, for the books and purchase orders to be able to be viewed on-line, and then parents can see for themselves where the money goes. What good is " meaning well " if your child winds up in the 37% of special ed kids who wind up in prison within five years of leaving high school?If I ask a teacher which specific IEP objective was worked on with my child for that week, I think if they mean well, they ought to be able to tell me. They can mean well but they are not going to go against the head of the ARD committee and ever stand up for what is right because they know they will lose their job if they do. They go along.... I don't mean to say there are not some very caring teachers. There are, but unfortunately their hands are tied if they want to keep their jobs, and in these times, they are going to do whatever they have to do to hang on to that paycheck. I am no saint. If I had been a single teacher without my husband's paycheck to fall back on and have a child or two to raise, I can't say I would have been as outspoken as I was, but I also know I took these things seriously. I don't blame the teachers at all except for ignoring a child's IEP. I blame the administrators and school boards who make the decisions without any input from the parents and without ever meeting our children. These people sit in their meetings and hear the word " autism, " and automatically think, " Ah, this kid can't learn. This kid is a waste of money, " and then votes no to the allocation of the funds for training or programs. They have very little understanding of what a child with autism needs and how far he or she can go, and that is just plain wrong! My point here is that parents cannot rely on " well meaning " to get their kids educated in this state. We have few choices: public school, private school (if one can afford it), or home school. Where are the public schools that are doing a truly appropriate job because we'd like to move there? Are there any in this state? I am just frustrated, for I know I am going to save my kid, but I do think about the kids who got left behind, and I still care about what happens to them. How do we get schools to get on board with what works? How do we convince teachers that they really really do have to implement an IEP as written? I am telling you that I would bet that most IEP's after they are written and signed by the parents just get stuck in a drawer never to be looked at again. Teachers view them at grading time and just place some arbitrary grade that they surmise from their own opinion and not from any real data. Where is the accountability? Thanks for letting me vent. It is just that I used to be such a proud Texan --I mean, I would wear one of those shirts that said when you die you get to go to Texas, but having a special needs child has changed that perspective entirely. I am now honestly ashamed of my home state, having seen the way it treats the least of its citizens -- not just our kids but the homeless and elderly, as well. We'd move if we could. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Haven I don't think the system is working, that's why we aren't in the system. I homeschooled and recovered my kids on my own. Now I'm teaching at a Montessori campus to cover my children's private education. You know back when my kid was smearing his shit on the wall, I really don't want to be judged for the loon that I was in that difficult situation. I sure don't judge an already failing system for not knowing how to deal with children affected by autism. Does that mean we should all be trapped in our homes with no medical care/insurance or education opportunities? Heck no...it's a wonder I didn't drop over with a heart attack. My vote is nobody should go to school until they are ready to learn. Which means they should be treated for the medical condition they have. A wide variety of approaches should be set up for a team including the parents to determine what is needed. All the hippie crazy shit works. In fact it became quite easy to figure out what to do for my son. I just went in the craziest, hippiest direction I could find. That's where the answers are. Kids in fact do need proper nutrition, not set up by the food pyramid that comes from govt agencies who are corrupt. In fact if a kid isn't responding we shouldn't throw more money at a system...we should figure out what is wrong with our approach. I found Son-Rise and Diet and trust me, a few years ago I was a beer drinking, mexican food eating, girl who taught in the public school. I laughed at the weirdos that I've now become. It's clear the system isn't working. At some point before America shuts down it will be clear that the current system isn't working. We are a fat, alcoholic, diabetic, biopolar nation with failing schools. So while the gov't works on this...ha ha ha, I decided to take back my little family, break the vicious cycle and try and find a happy hippie place. A grassroots movement of many moms is doing the same thing. And I do think we are causing change. I had big dreams once of changing the system. I met another mother in the Houston area who was one of the first people to help us. She has solved her own problems by opening her own center. Her son has exactly what he needs. She's just a regular mom like me. I was inspired and thought...hey I can do this too. I did the same and found a way to give my kids what they need. Though I still believe I'll be part of changing the system, I choose my battles carefully. I do believe the failing system means well. I was one of those teachers once. I too was pulling out my hair with todays challenges. I'm not going to judge anyone in this ridiculous situation. My son's echolalia almost made me slit my wrists. I decided we weren't even going to focus on academics until he was well. I don't think the schools should even receive our kids until they are ready. I think the society should have wellness development centers for families to ensure that the kids are ready to mainstream. Of course if all of this happened...we'd get to the truth which would mean we could prevent all this bullshit in the first place. Happy New Year Haven...I love you and wishing your sweet baby all the best this year! > > , > > I wish my experience had been that they " mean well, " but I haven't seen > that. I'm sure every school is different. In the schools I've been to > regarding advocacy, I see a lot of manipulation to save money and throw > these kids away. I see money getting thrown at meaningless areas like > football and ag programs and little thrown toward teacher and aide training. > > You can't mean well if you put thousands of dollars towards frivolous > programs and then tell parents your district doesn't have the money for > training. It makes no sense to me. Personally, in the situation we are in > with the autism epidemic, the schools are going to have to take a long hard > look at these programs which do nothing to allow our students to compete > against the scholars of other nations who place high priority on academics. > > Many high schools in the northern states do not have football and put their > money to academics and therefore rank higher in education than Texas --where > football is the be all and end all of everything. Yet, few schools produce > professional ball players. Abrahan Lincoln said that America cannot be > destroyed from outside, but that we will do it to ourselves. One need only > to look at where we place our high priorities and then consider WHO owns > most of the business real estate in this country. > > I digress to consider ALL children. Texas has done little in the past > decade to address its thirty-eighth place spot in education overall. Let > alone address the travesty of remaining in forty-ninth for special needs > children. Even as a teacher years ago, I saw myriad teachers who paid > little if any attention to accommodations and " Content Mastery " > objectives. There is this pervasive sentiment to put " It " on paper and then > forget it and " Just don't fail them. " How is this learning? How is this > demonstrating " meaning well? " > > You can tell this by having parents push for accountability. Just ask for > tracking sheets and ask a special ed teacher to inform you, the parent, of > which specific IEP objective was worked on that week. See what happens. > > ALL parents should be keeping all their child's tangible work and tests and > matching each question to IEP objectives to see if they mesh with the grades > given. My guess is that if more and more parents would do this they will > find that the work does not match the IEP. They would find that there is > little to no benchmark testing of objectives to see if the IEP is working > for the child. > > Meaning well is of little value to a child who is headed to life in an > institution if he doesn't get to independence, and it will be cold comfort > for parents to parents who may leave this earth with no one to look after > their child. > > Are there some children who absolutely can't get there? Sure, but there are > far too many children with autism who won't get there simply because schools > say they mean well but are just too damn entrenched in their ignorance of > this disorder to learn to do what is appropriate. > > I'm not yelling at you --please don't think so, but I see rather an ill use > of funds and no real desire to educate these kids. I see abject disbelief > in the ability of these children to learn academics. I see them being > written off as soon as the label is placed. If they mean so well, how come > they send there teachers to seminars once a year where district lawyers > educate them on how to manipulate special ed parents? I know the games they > play because I make a point to attend these. they tell them what to say and > how to say it, and they teach them how to get around providing what is > appropriate. They teach them how to get the parents to agree to the > cheapest IEP and pass is off as a " Cadillac. " How many parents are going to > be able to recognize that Cadillac as one that is half buried at the > Cadillac Ranch? > > It is my understanding that these schools are allowed to put the special ed > funds into the " general fund. " How then are parents supposed to know that > the funds are being used appropriately? I would like to see special ed > funds remain in its own account, for the books and purchase orders to be > able to be viewed on-line, and then parents can see for themselves where the > money goes. > > What good is " meaning well " if your child winds up in the 37% of special ed > kids who wind up in prison within five years of leaving high school? > > If I ask a teacher which specific IEP objective was worked on with my child > for that week, I think if they mean well, they ought to be able to tell me. > They can mean well but they are not going to go against the head of the ARD > committee and ever stand up for what is right because they know they will > lose their job if they do. They go along.... > > I don't mean to say there are not some very caring teachers. There are, but > unfortunately their hands are tied if they want to keep their jobs, and in > these times, they are going to do whatever they have to do to hang on to > that paycheck. I am no saint. If I had been a single teacher without my > husband's paycheck to fall back on and have a child or two to raise, I can't > say I would have been as outspoken as I was, but I also know I took these > things seriously. I don't blame the teachers at all except for ignoring a > child's IEP. I blame the administrators and school boards who make the > decisions without any input from the parents and without ever meeting our > children. These people sit in their meetings and hear the word " autism, " and > automatically think, " Ah, this kid can't learn. This kid is a waste of > money, " and then votes no to the allocation of the funds for training or > programs. They have very little understanding of what a child with autism > needs and how far he or she can go, and that is just plain wrong! > > My point here is that parents cannot rely on " well meaning " to get their > kids educated in this state. We have few choices: public school, private > school (if one can afford it), or home school. Where are the public schools > that are doing a truly appropriate job because we'd like to move there? Are > there any in this state? > > I am just frustrated, for I know I am going to save my kid, but I do think > about the kids who got left behind, and I still care about what happens to > them. How do we get schools to get on board with what works? How do we > convince teachers that they really really do have to implement an IEP as > written? I am telling you that I would bet that most IEP's after they are > written and signed by the parents just get stuck in a drawer never to be > looked at again. Teachers view them at grading time and just place some > arbitrary grade that they surmise from their own opinion and not from any > real data. Where is the accountability? > > Thanks for letting me vent. It is just that I used to be such a proud Texan > --I mean, I would wear one of those shirts that said when you die you get to > go to Texas, but having a special needs child has changed that perspective > entirely. I am now honestly ashamed of my home state, having seen the way > it treats the least of its citizens -- not just our kids but the homeless > and elderly, as well. > > We'd move if we could. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 I will look at that halo-soma. A little background on us I didn't mention in my introduction. My son was born a twin. His twin brother passed away suddenly and unexpectedly in his sleep when they were 20 months old. No one could tell us why this happened. You can imagine my fears with . He still sleeps with us. I am terrified to let him sleep in his own room. His is on the waiting lists for in home services through MHMR and a few ST and OT places. Since he does get ssi and medicaid, every time I find a place that takes it, they always has huge wait lists. He made a lot of progress the year before last, but last year he really regressed. He loved his teacher, but moved into a FALS class. His teacher last year was scared of him because if he gets frustrated, he will bite and pinch. This year, he loves his teacher and seems to be doing much better. That's why I really don't want to move out of mansfield if possible. It's so hard to take him places like the grocery store. Sometimes he starts making his "bird" noise and people just stare at us. He's been potty trained since he was about 4. It took me forever to get him to pee in the potty. He'd pee everywhere else like the living room, his room, but not in the bathroom. For months and months, I take him in the bathroom when he first woke up, but he just refused to use it. One day out of the blue, I took him in the bathroom in the afternoon, lifted up the toilet seat and asked if he needed to go potty and he did! After that, he started using it continuously. For some reason, getting him to poop in the potty was much easier. He used to go in one spot on the living room floor. One day I saw his start to squat, so I took him in the bathroom and sat him on the potty and he pooped in it. I guess he understood that you do that there. He just has trouble wiping. Since he was potty trained we decided to get our living room and hallway carpets replaced. We used our entire income tax refund. We called empire carpet and some guy came to measure it. We made the huge mistake of telling him that our son has autism and before he was potty trained, he used to go on the carpet. Our carpet was trashed from food, playdo and other things. We didn't think twice about it. After they came and installed it, I got a knock at the door a few days later. It was a lady from CPS! The first thing she said was, "I understand you just got your living room and hallway carpet replaced and you let your son urinate and deficate wherever he wants to". Needless to say, we were livid! Of course they never found any abuse or neglect. He does not do good with the pecs system. He does understand some sign language. We've never had him tested for metals. When his brother died, we took him to a neurologist who did a whole bunch of metabolic blood work and an mri and didn't find anything abnormal. He did a lot of urine test too. He saw every type of specialist you can think of. He does not eat much dairy. He won't drink milk or juice. He will drink water, ice tea, or dr. pepper. He is really into red meat. He loves hamburger meat and steak. When we did that GFCF diet, he would hardly eat any of the stuff we got. We only did it for a few months. I might look into that again. But, the GFCF stuff can get expensive. The only major medical issue we have with him has been constant ear infections. He's had 4 sets so far. He had surgery back in oct. to have the tubes removed. His ENT didn't think it was necessary to put new tubes in. But, he still keeps on getting ear infections. Not sure if the tubes did a lot of good. He does go to bed about 930 or 10 and will sleep until I get him up. Years ago, he was only sleeping 3 to 4 hours a night tops. A few friends would complain about how their child would only take an hour and a half nap! never took naps! During the summer, he goes to ESY. It always scares me when he starts a new school and is with teachers he don't know. Since they don't know him and his little quirks, I get a phone called weekly saying he's having a meltdown and we need to come get him. He did this a lot at a few years ago. Every time we went and got him, he'd start laughing and giggling in the parking lot. It's always hard to tell if it's his ears that hurt or not. I really don't want to lose our house, but we are doing everything to stay. Hi all. I live in Mansfield and I have a non verbal 8 year old autistic son. I can sure sympathize with y'all on how hard it is to have a child like ours. We did try a few diets and supplements years ago, but never saw any improvements. It's odd how one thing will work wonders for one child, but does nothing for the other. He doesn't eat a lot of processed food or dairy. He loves fresh fruit and cherry tomatoes. Since he's been in school, we have seen a lot of improvements. I was so happy because he finally learned how to blow bubbles. I remember the ST and OT trying this for years! Now, if you hold a bubble wand in front of him and tell him to blow bubbles, he will. He is our only child. For any of you who live in the DFW area, what are the best schools for kids like ours? Since my husband lost his job and finally found one at a lot lesser pay, there is a good chance we might just have to let them foreclose on our house if we don't get a loan modification. Another question I have is about renting an apartment. My son makes lots and lots of noise at all hours of day and night. Can we get evicted because of this? One of the choices we were thinking about was just renting a mobile home so neighbors wouldn't complain. So far we have been happy with the school here, but if we had to move I'd like a decent school for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 I, too, have a non-verbal son.He is 9 years old. He is extremely non-communicative. His strength is his receptive language. We also live in Mansfield but he is in an SLC program in GP where I teach. I feel as if his teacher has given up on him & is very frustrated as we are. We've tried Speech therapy, ABA, OT, PT, PECS, etc etc. W/ little or no success. He's been on GF diet for 3 yrs now- the only thing that improved really was his willingness to try new foods as he was extremely limited in what he would eat. I'm considering adding CF as well to see if that helps... I've heard of the RPM method & was wondering if you had the contact info of the person you're referring to from Dallas? The past 6 wks, he has started squawking again virtually non-stop when he's awake- also spitting as well. Interestingly enough, he doesn't do it when he's around my mother-in-law's husband...;( we've tried different forms of behavior modification go try to stop it to no avail. His stimming has also increased. He was fairly calm until about the past 3-6 months. I'm not sure if it has anything to do w/ hormones or not, either. I do not want to medicate my son but I'm at a loss on how to help my son. If you know anything about Dr. Kotsanis in Grapevine, please let me know. Any advice would be appreciated.DSent from my iPhone Why do schools work so hard on blowing bubbles? Really? My son is 15 and I think he spent many hours a day when he was 5 and 6 learning to do just that. Don't count on the schools teaching your child much. If you want ABA the research shows you need many many hours of ABA a week. Schools will not do that. You'll need to do that yourself after school. And, ABA is successful for only 50% of persons who do it or there abouts. I'd look into RPM at HALO here in Austin.www.halo-soma.com Get the manual on line read about the method you can learn this yourself and teach your son after he comes home from school learning to blow bubbles or if your really lucky sort letters into alphabet envelopes. By the time my son was in a 5th grade Autism unit he was still flopping on the floor and not doing the folder jobs and the small amount of ABA he was getting they kept repeating the same lesson again and again because they thought he couldn't add 2+3. It turns out by using RPM we learned he actually could do times tables it only took two lessons to teach him. He is very bright....we had no idea because his verbal skills are so low. There is a RPM tutor who lives in Dallas that both Haven and I use for RPM tutoring. She is amazing and reasonably priced and she can show you how to get started even if you can't afford her every week. But if there is anyway you can afford it you really need to make the trip to Austin to see Soma at HALO. She'll show you things you never thought were possible. She invented RPM to teach her son Tito who is nonverbal but has written several books. Soma is an inspiration and a mentor to parents all over the world. She also believes that you can learn to teach your child and I have many tutors who have learned her method and my son even uses RPM at school now in the 9th grade. He's fully included and a A student. He still uses very little spoken language. Let me know if you'd like s email address I think she has room for one more student. (If Haven will let her go I think she has plans on adopting her.... Trina Hi all. I live in Mansfield and I have a non verbal 8 year old autistic son. I can sure sympathize with y'all on how hard it is to have a child like ours. We did try a few diets and supplements years ago, but never saw any improvements. It's odd how one thing will work wonders for one child, but does nothing for the other. He doesn't eat a lot of processed food or dairy. He loves fresh fruit and cherry tomatoes. Since he's been in school, we have seen a lot of improvements. I was so happy because he finally learned how to blow bubbles. I remember the ST and OT trying this for years! Now, if you hold a bubble wand in front of him and tell him to blow bubbles, he will. He is our only child. For any of you who live in the DFW area, what are the best schools for kids like ours? Since my husband lost his job and finally found one at a lot lesser pay, there is a good chance we might just have to let them foreclose on our house if we don't get a loan modification. Another question I have is about renting an apartment. My son makes lots and lots of noise at all hours of day and night. Can we get evicted because of this? One of the choices we were thinking about was just renting a mobile home so neighbors wouldn't complain. So far we have been happy with the school here, but if we had to move I'd like a decent school for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 We have been seeing Dr Walls in Aledo for 2 months. It's made so much difference for my 10 yr old son. He does a combination of Brain Balance-type work and nutritional support. Sent from my iPhone I, too, have a non-verbal son.He is 9 years old. He is extremely non-communicative. His strength is his receptive language. We also live in Mansfield but he is in an SLC program in GP where I teach. I feel as if his teacher has given up on him & is very frustrated as we are. We've tried Speech therapy, ABA, OT, PT, PECS, etc etc. W/ little or no success. He's been on GF diet for 3 yrs now- the only thing that improved really was his willingness to try new foods as he was extremely limited in what he would eat. I'm considering adding CF as well to see if that helps... I've heard of the RPM method & was wondering if you had the contact info of the person you're referring to from Dallas? The past 6 wks, he has started squawking again virtually non-stop when he's awake- also spitting as well. Interestingly enough, he doesn't do it when he's around my mother-in-law's husband...;( we've tried different forms of behavior modification go try to stop it to no avail. His stimming has also increased. He was fairly calm until about the past 3-6 months. I'm not sure if it has anything to do w/ hormones or not, either. I do not want to medicate my son but I'm at a loss on how to help my son. If you know anything about Dr. Kotsanis in Grapevine, please let me know. Any advice would be appreciated.DSent from my iPhone Why do schools work so hard on blowing bubbles? Really? My son is 15 and I think he spent many hours a day when he was 5 and 6 learning to do just that. Don't count on the schools teaching your child much. If you want ABA the research shows you need many many hours of ABA a week. Schools will not do that. You'll need to do that yourself after school. And, ABA is successful for only 50% of persons who do it or there abouts. I'd look into RPM at HALO here in Austin.www.halo-soma.com Get the manual on line read about the method you can learn this yourself and teach your son after he comes home from school learning to blow bubbles or if your really lucky sort letters into alphabet envelopes. By the time my son was in a 5th grade Autism unit he was still flopping on the floor and not doing the folder jobs and the small amount of ABA he was getting they kept repeating the same lesson again and again because they thought he couldn't add 2+3. It turns out by using RPM we learned he actually could do times tables it only took two lessons to teach him. He is very bright....we had no idea because his verbal skills are so low. There is a RPM tutor who lives in Dallas that both Haven and I use for RPM tutoring. She is amazing and reasonably priced and she can show you how to get started even if you can't afford her every week. But if there is anyway you can afford it you really need to make the trip to Austin to see Soma at HALO. She'll show you things you never thought were possible. She invented RPM to teach her son Tito who is nonverbal but has written several books. Soma is an inspiration and a mentor to parents all over the world. She also believes that you can learn to teach your child and I have many tutors who have learned her method and my son even uses RPM at school now in the 9th grade. He's fully included and a A student. He still uses very little spoken language. Let me know if you'd like s email address I think she has room for one more student. (If Haven will let her go I think she has plans on adopting her.... Trina Hi all. I live in Mansfield and I have a non verbal 8 year old autistic son. I can sure sympathize with y'all on how hard it is to have a child like ours. We did try a few diets and supplements years ago, but never saw any improvements. It's odd how one thing will work wonders for one child, but does nothing for the other. He doesn't eat a lot of processed food or dairy. He loves fresh fruit and cherry tomatoes. Since he's been in school, we have seen a lot of improvements. I was so happy because he finally learned how to blow bubbles. I remember the ST and OT trying this for years! Now, if you hold a bubble wand in front of him and tell him to blow bubbles, he will. He is our only child. For any of you who live in the DFW area, what are the best schools for kids like ours? Since my husband lost his job and finally found one at a lot lesser pay, there is a good chance we might just have to let them foreclose on our house if we don't get a loan modification. Another question I have is about renting an apartment. My son makes lots and lots of noise at all hours of day and night. Can we get evicted because of this? One of the choices we were thinking about was just renting a mobile home so neighbors wouldn't complain. So far we have been happy with the school here, but if we had to move I'd like a decent school for him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Wow , I'm sorry for your loss, I can't imagine how scary that was to loose a child suddenly like that. And I'm so sorry to hear that you had to endure child services coming to check things out, with the carpet guy. People just don't understand what our world can be like. All the best as you find resources that work for your family. In the area of ear infections, taking dairy and soy away could be very helpful. Adding probiotics, lots of beneficial bacteria may be very helpful too. Have you heard of TACA? I've listed the link below. They have great info on doing dietary work on a budget and ways to keep the costs down. They even have a way to do this diet on foodstamps and the meals look pretty healthy. One way we keep the costs down is to make most from scratch. Haven, another mother on this board cooks a ton from scratch too. I'm sure there are plenty of other mothers who do this too. Those GF boxes not only are expensive they aren't really good for our kids anyway with all the sugar. I hope the link below gives you some new direction for this new year. All the best to your family! http://gfcf-diet.talkaboutcuringautism.org/index.htm Love > > >  > > > > > > > > Hi all. I live in Mansfield and I have a non verbal 8 year old autistic son. I can sure sympathize with y'all on how hard it is to have a child like ours. We did try a few diets and supplements years ago, but never saw any improvements. It's odd how one thing will work wonders for one child, but does nothing for the other. He doesn't eat a lot of processed food or dairy. He loves fresh fruit and cherry tomatoes. Since he's been in school, we have seen a lot of improvements. I was so happy because he finally learned how to blow bubbles. I remember the ST and OT trying this for years! Now, if you hold a bubble wand in front of him and tell him to blow bubbles, he will. He is our only child. For any of you who live in the DFW area, what are the best schools for kids like ours? Since my husband lost his job and finally found one at a lot lesser pay, there is a good chance we might just have to let them foreclose on our house if we > don't get a loan modification. Another question I have is about renting an apartment. My son makes lots and lots of noise at all hours of day and night. Can we get evicted because of this? One of the choices we were thinking about was just renting a mobile home so neighbors wouldn't complain. So far we have been happy with the school here, but if we had to move I'd like a decent school for him. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 ,My heart goes out to you! My son was a twin, too, but I miscarried his twin early in the pregnancy. I didn't know there were twins at the time, I thought I was miscarrying one baby, and since it had taken me a lifetime to get pregnant, and being forty at the time, I was beside myself thinking I had lost my one and only chance to have a child. That was a horrible day! But then my husband took me in to the doctor's and my HCG was very high, so they decided to do a sonogram, and low and behold there was another heartbeat! You said your son's twin died of SIDS at twenty months. I cannot even imagine going through such horrendous pain as you have experienced. I would like to ask if at the time this happened, had any vaccinations been recent? Before your son ever gets new teachers, the school is supposed to devise a transition plan for him to prepare him for the change.My son used to defecate on the floor, too. What a jerk that carpet installer was!!! God I hate that people do not understand our situations! My son did not take naps either, and he rarely slept for more than two hours at a stretch. I hated for him to take a nap because if he did, he would awaken in horrible pain and scream for more than two hours. I mean blood curdling screaming. I would try everything I knew to calm him down, but nothing worked. One day I put him in the carriage and was walking down our street trying this to see if he would calm down. I had been at trying various things for an hour and a half, and one of our neighbors came by and she acted like I must be doing something bad to my child! She called me every day for the next few days. She just didn't get it. Then he had a period where he kept getting hurt -- well, first he had a meltdown at our neighbors and when I put him in the truck I watched him get into his car seat, and then I turned for a split second to say bye to my neighbor, and my son leaped head first out the door! He fell to the ground; I wasn't able to catch him in time. I felt horrible! Then we got home and I noticed he was holding his hand funny. I thought he broke his wrist, but he just broke his thumb. Then in the same month, I was putting clothes a way in our room and I turned round just in time to find that he had found a bottle of some kind of cleaning oil in my husband's bottom drawer and he had the top off!!! I freaked. I couldn't tell if he had drank any. The stuff smelled like gasoline. I called poison control and they thought he would be fine, but I took him to emergency anyway.Then not two weeks later my husband and I were sitting with him on the couch, and Ethan slipped to get off and BARELY bumped his leg on the coffee table and then couldn't walk! With so many trips to the emergency room in a month, we were worried someone would call CPS. The hospital couldn't find a break in his leg, so then we took him to a specialist, and he couldn't see a break but said it could be a hairline fracture so he cast his leg for four weeks. The cast came off, and still Ethan couldn't walk, so we went to ish Rite, and they couldn't figure anything out either. It took two months for him to put weight on that leg again! This added to the numerous ER visit for pneumonia, bronchitis, anaphylaxis, fecal impaction....I don't know how I ever survived without having a nervous breakdown. His ER file alone is over four hundred pages! It all started out with one ear infection after another. I mean, he regressed immediately after vaccination. he lost all speech immediately, and then he started to get sick all the time. Until a year and a half ago, he was sick with a fever every two to three weeks like clock work. Diet and metabolic supports have done a lot to help him, and taking him out of public school and home schooling has helped even more health wise. Does your son have red ears or cheeks? This can be a sign that gluten casein or soy is not good for him. I know would say that the fact he craves red meat is a sign to take it away, and I am inclined to agree. You need help to figure these things out, and I would urge you to take him to see DR. . He has an office up in Frisco, I think. I know he has his main office in Austin. Dr. accepts Medicaid, I think. As far as speech, PT, and OT, if your son is on medicaid, you can call a home health service and try to get services through them. We use At Home Healthcare and Therapy 2000. We have been blessed with wonderful therapists. I urge you to meet . It is very expensive to go all the way to Austin. Regarding the gf/cf/sf diet, there is an inexpensive way to do it -- just think about getting back to basics : a meat, a fruit, a vegetable --no coatings, no dairy added. You can use olive oil for sauteing but not for high heat. If you decide to give it a try again, just eliminate one thing at a time until you are comfortable with that elimination, then you can move on to the next elimination. We stretched it over a year, going casein free first, then gluten a few months later and then soy free several months after that. There is a test for opiate peptides in the urine you could have done before you decide. If the peptides are high in the urine, your child needs to be on the diet. If the peptides are low, then there may be no need, but cleaning up the diet on the whole is a very good idea. You have been through so much. You have come to a good group for help and support. Hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Dolly,I would not recommend Dr. Kotsonis. I suggest you consider Dr. or Dr. Rao. I will no longer recommend IV chelation, as after having done this with our son and continuing to research, I am inclined to agree with Dr. Andy Cutler that IV chelation is dangerous and can make things worse. If you decide to do chelation, research the AC Protocol which is low dose and much safer. If you ask a DAN! they will be against it as that is less money for them, so you have to research and read and decide for yourself which way to go, but my son had terrible asthma reactions to IV chelation. It was very scary, and his stimming returned with IV chelation. I do urge you to go casein free. It may not be easy. We took casein away first, and our son went through horrible withdrawal for three weeks. I was in tears at the end of each of those days, but then things started getting better. Then we removed gluten and saw fewer withdrawal symptoms. The most dramatic change came months later when we retested opiate peptides and they were still high. His doctor recommended we also remove soy, so we did, and then dramatic changes started to occur. Our son said his first sentence. We have been gf/cf/sf ever since. I know a lot of the behaviors you describe tend to come from yeast overgrowth and possibly incomplete breakdown of proteins. There are enzymes you can buy to help with digesting proteins. You can break them open and mix in apple sauce if he cannot swallow pills, but you must be careful not to get the powder on the skin or in eyes as it can damage or burn these. I know the same things don't work for all children, but it is worth a try to try the things that have worked for others. They used to say if the diet did not work in a short while then quit, but now the thinking is that it is worth it to give the diet a two-year trial before quitting. has great knowledge about diet, and the Body Ecology diet makes a lot of sense, as well. One thing is for sure, the standard American diet is crap for our kids. It's crap for us, as well. We all need to think about what we are putting in our bodies and seek to put " real " nutrition in the body. Are you treating for yeast? Giving biotin makes it easier to destroy the bad yeast in the gut. Giving grapefruit seed Extract (GSE) and some other things can help, as well. My son demonstrated a dramatic improvement after being given a broad spectrum antibiotic -- he sat up and said all the words he had known before regression on the fourth day of treatment. There was a study showing that children with autism improved after being given vancomycin IM, but they regressed to base line once the antibiotic was ceased. Our son did regress after the antibiotic was stopped, but not to baseline. He still retained some one syllable words and we built on this. Dr. Rao in Plano or Dr. would be the best choices in this area, but have Dr. Rao be very up front about your out of pocket expenses. If I were just starting out but knew what I know now, I would definitely get an opiate peptide test, check copper/zinc ratio, check for overgrowth of yeast and bacteria, and get a CBC to specifically check the neutrophil count. I wouldn't get a urinary prophyrins test for heavy metals. I would opt for a hair test from DDI --You can order that one directly. then you could apply certain " rules of counting " to determine if the body is over burdened with heavy metals. I think the hair test is the most accurate way. I'm not a doctor --just a mom whose " been there, " and many of the things your son is doing point to yeast overgrowth. Yeast has been a long time, constant problem for my son. Once he was having his lung problems and the antibiotics weren't working. Nothing was working, and I finally said to his pediatrician that I thought the infection was fungal. He looked surprised but was will to try putting him on a course of anti fungal medication. It cleared his lungs right up. Acetyl-L-carnitine was the most important amino acid we ever put our son on. Studies from Berkley have shown this amino acid to be a powerful healer. It has the ability to go inside cells and repair mitochondria. ALA is used to chelate children. Berkley's study combined ALA and Acetyl-L-Carnitine with amazing results. In their study, very old mice began to act like very young mice over time. But if you ever use ALA, it is a powerful chelator and must be dosed on its half-life of three hours around the clock for seventy-two hours straight. If you don't follow that time line, then it can make things worse, so one must decide to be very committed to that protocol. You can learn more about this form of chelation on the Autism-Mercury group. A lot fo people -- not just children with ASD are getting better with this form. Adults are losing their " brain fog, " but adults must have amalgam fillings removed first. I always think it is very important to get these kids' copper levels checked ASAP as many children with this disorder have difficulty regulating copper levels, and excess copper levels over time can cause permanent damage to liver, kidneys, and brain. We found out early on (during the first year after regression) that our son's copper levels were very high. 's disease must be ruled out, but is usually not found in our kids. Extra zinc supplementation chelates the excess copper out. Dr. Rao is in Plano. His number is . I'm not sure what Dr. 's number is. Maybe someone else here knows? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 ,You are right. the system is so broken. I was just naive enough to spend years thinking I could change it and make it better. I still want to, but I am soooo glad not to have to deal with that crap any more. I am so much happier home schooling! I get so excited watching him make progress. Tomorrow evening we are going for our first class at IASIS in ville. It's a long drive once a week, but he will get to be in a social skills class with other children, and I've heard great things bout it. The year is going great! He is reading better and better every day, learning math, writing little stories and paragraphs, and he is gaining confidence. Life is good.I was so apprehensive about home schooling --worried my son and I might just get sick of being together all the time, but we both love it. He tells me I am a good teacher:). He read a story about a baby bird looking for its mother, and now he calls me " Mother bird, " and I call him " Baby bird. " He comes and hugs me and says, " I wrap my wings around you. " God, I love my kid! He is the most genuine human being I have ever met! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 these are such good conversations with such good info but I am totally overwhelmed. I need steps broken down. what do I do today, tomorrow, the next day. What test do I first start with? What foods do I need to buy? What supplements do I buy? What do I do when my son is screaming crying that he is hungry but I dont know what food to give him to make sure he gets full and isnt hungry 10 minutes later? These are all really rhetorical questions but what is really going thru my head reading all these emails. Does this Dr. Rao automatically do the tests you mentioned below or do you have to ask for them specifically? Thanks. Re: new here Dolly,I would not recommend Dr. Kotsonis. I suggest you consider Dr. or Dr. Rao. I will no longer recommend IV chelation, as after having done this with our son and continuing to research, I am inclined to agree with Dr. Andy Cutler that IV chelation is dangerous and can make things worse. If you decide to do chelation, research the AC Protocol which is low dose and much safer. If you ask a DAN! they will be against it as that is less money for them, so you have to research and read and decide for yourself which way to go, but my son had terrible asthma reactions to IV chelation. It was very scary, and his stimming returned with IV chelation.I do urge you to go casein free. It may not be easy. We took casein away first, and our son went through horrible withdrawal for three weeks. I was in tears at the end of each of those days, but then things started getting better. Then we removed gluten and saw fewer withdrawal symptoms. The most dramatic change came months later when we retested opiate peptides and they were still high. His doctor recommended we also remove soy, so we did, and then dramatic changes started to occur. Our son said his first sentence. We have been gf/cf/sf ever since.I know a lot of the behaviors you describe tend to come from yeast overgrowth and possibly incomplete breakdown of proteins. There are enzymes you can buy to help with digesting proteins. You can break them open and mix in apple sauce if he cannot swallow pills, but you must be careful not to get the powder on the skin or in eyes as it can damage or burn these.I know the same things don't work for all children, but it is worth a try to try the things that have worked for others. They used to say if the diet did not work in a short while then quit, but now the thinking is that it is worth it to give the diet a two-year trial before quitting. has great knowledge about diet, and the Body Ecology diet makes a lot of sense, as well. One thing is for sure, the standard American diet is crap for our kids. It's crap for us, as well. We all need to think about what we are putting in our bodies and seek to put "real" nutrition in the body.Are you treating for yeast? Giving biotin makes it easier to destroy the bad yeast in the gut. Giving grapefruit seed Extract (GSE) and some other things can help, as well. My son demonstrated a dramatic improvement after being given a broad spectrum antibiotic -- he sat up and said all the words he had known before regression on the fourth day of treatment. There was a study showing that children with autism improved after being given vancomycin IM, but they regressed to base line once the antibiotic was ceased. Our son did regress after the antibiotic was stopped, but not to baseline. He still retained some one syllable words and we built on this.Dr. Rao in Plano or Dr. would be the best choices in this area, but have Dr. Rao be very up front about your out of pocket expenses. If I were just starting out but knew what I know now, I would definitely get an opiate peptide test, check copper/zinc ratio, check for overgrowth of yeast and bacteria, and get a CBC to specifically check the neutrophil count. I wouldn't get a urinary prophyrins test for heavy metals. I would opt for a hair test from DDI --You can order that one directly. then you could apply certain "rules of counting" to determine if the body is over burdened with heavy metals. I think the hair test is the most accurate way.I'm not a doctor --just a mom whose "been there," and many of the things your son is doing point to yeast overgrowth. Yeast has been a long time, constant problem for my son. Once he was having his lung problems and the antibiotics weren't working. Nothing was working, and I finally said to his pediatrician that I thought the infection was fungal. He looked surprised but was will to try putting him on a course of anti fungal medication. It cleared his lungs right up. Acetyl-L-carnitine was the most important amino acid we ever put our son on. Studies from Berkley have shown this amino acid to be a powerful healer. It has the ability to go inside cells and repair mitochondria.ALA is used to chelate children. Berkley's study combined ALA and Acetyl-L-Carnitine with amazing results. In their study, very old mice began to act like very young mice over time. But if you ever use ALA, it is a powerful chelator and must be dosed on its half-life of three hours around the clock for seventy-two hours straight. If you don't follow that time line, then it can make things worse, so one must decide to be very committed to that protocol. You can learn more about this form of chelation on the Autism-Mercury group. A lot fo people -- not just children with ASD are getting better with this form. Adults are losing their "brain fog," but adults must have amalgam fillings removed first.I always think it is very important to get these kids' copper levels checked ASAP as many children with this disorder have difficulty regulating copper levels, and excess copper levels over time can cause permanent damage to liver, kidneys, and brain. We found out early on (during the first year after regression) that our son's copper levels were very high. 's disease must be ruled out, but is usually not found in our kids. Extra zinc supplementation chelates the excess copper out.Dr. Rao is in Plano. His number is . I'm not sure what Dr. 's number is. Maybe someone else here knows? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 It is very overwhelming Sent from my Verizon Wireless BlackBerrySender: Texas-Autism-Advocacy Date: Mon, 3 Jan 2011 10:36:44 -0600To: <Texas-Autism-Advocacy >ReplyTo: Texas-Autism-Advocacy Subject: Re: new here these are such good conversations with such good info but I am totally overwhelmed. I need steps broken down. what do I do today, tomorrow, the next day. What test do I first start with? What foods do I need to buy? What supplements do I buy? What do I do when my son is screaming crying that he is hungry but I dont know what food to give him to make sure he gets full and isnt hungry 10 minutes later? These are all really rhetorical questions but what is really going thru my head reading all these emails. Does this Dr. Rao automatically do the tests you mentioned below or do you have to ask for them specifically? Thanks. Re: new here Dolly,I would not recommend Dr. Kotsonis. I suggest you consider Dr. or Dr. Rao. I will no longer recommend IV chelation, as after having done this with our son and continuing to research, I am inclined to agree with Dr. Andy Cutler that IV chelation is dangerous and can make things worse. If you decide to do chelation, research the AC Protocol which is low dose and much safer. If you ask a DAN! they will be against it as that is less money for them, so you have to research and read and decide for yourself which way to go, but my son had terrible asthma reactions to IV chelation. It was very scary, and his stimming returned with IV chelation.I do urge you to go casein free. It may not be easy. We took casein away first, and our son went through horrible withdrawal for three weeks. I was in tears at the end of each of those days, but then things started getting better. Then we removed gluten and saw fewer withdrawal symptoms. The most dramatic change came months later when we retested opiate peptides and they were still high. His doctor recommended we also remove soy, so we did, and then dramatic changes started to occur. Our son said his first sentence. We have been gf/cf/sf ever since.I know a lot of the behaviors you describe tend to come from yeast overgrowth and possibly incomplete breakdown of proteins. There are enzymes you can buy to help with digesting proteins. You can break them open and mix in apple sauce if he cannot swallow pills, but you must be careful not to get the powder on the skin or in eyes as it can damage or burn these.I know the same things don't work for all children, but it is worth a try to try the things that have worked for others. They used to say if the diet did not work in a short while then quit, but now the thinking is that it is worth it to give the diet a two-year trial before quitting. has great knowledge about diet, and the Body Ecology diet makes a lot of sense, as well. One thing is for sure, the standard American diet is crap for our kids. It's crap for us, as well. We all need to think about what we are putting in our bodies and seek to put "real" nutrition in the body.Are you treating for yeast? Giving biotin makes it easier to destroy the bad yeast in the gut. Giving grapefruit seed Extract (GSE) and some other things can help, as well. My son demonstrated a dramatic improvement after being given a broad spectrum antibiotic -- he sat up and said all the words he had known before regression on the fourth day of treatment. There was a study showing that children with autism improved after being given vancomycin IM, but they regressed to base line once the antibiotic was ceased. Our son did regress after the antibiotic was stopped, but not to baseline. He still retained some one syllable words and we built on this.Dr. Rao in Plano or Dr. would be the best choices in this area, but have Dr. Rao be very up front about your out of pocket expenses. If I were just starting out but knew what I know now, I would definitely get an opiate peptide test, check copper/zinc ratio, check for overgrowth of yeast and bacteria, and get a CBC to specifically check the neutrophil count. I wouldn't get a urinary prophyrins test for heavy metals. I would opt for a hair test from DDI --You can order that one directly. then you could apply certain "rules of counting" to determine if the body is over burdened with heavy metals. I think the hair test is the most accurate way.I'm not a doctor --just a mom whose "been there," and many of the things your son is doing point to yeast overgrowth. Yeast has been a long time, constant problem for my son. Once he was having his lung problems and the antibiotics weren't working. Nothing was working, and I finally said to his pediatrician that I thought the infection was fungal. He looked surprised but was will to try putting him on a course of anti fungal medication. It cleared his lungs right up. Acetyl-L-carnitine was the most important amino acid we ever put our son on. Studies from Berkley have shown this amino acid to be a powerful healer. It has the ability to go inside cells and repair mitochondria.ALA is used to chelate children. Berkley's study combined ALA and Acetyl-L-Carnitine with amazing results. In their study, very old mice began to act like very young mice over time. But if you ever use ALA, it is a powerful chelator and must be dosed on its half-life of three hours around the clock for seventy-two hours straight. If you don't follow that time line, then it can make things worse, so one must decide to be very committed to that protocol. You can learn more about this form of chelation on the Autism-Mercury group. A lot fo people -- not just children with ASD are getting better with this form. Adults are losing their "brain fog," but adults must have amalgam fillings removed first.I always think it is very important to get these kids' copper levels checked ASAP as many children with this disorder have difficulty regulating copper levels, and excess copper levels over time can cause permanent damage to liver, kidneys, and brain. We found out early on (during the first year after regression) that our son's copper levels were very high. 's disease must be ruled out, but is usually not found in our kids. Extra zinc supplementation chelates the excess copper out.Dr. Rao is in Plano. His number is . I'm not sure what Dr. 's number is. Maybe someone else here knows? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Lorree, Start slowly and do one change at a time so you can see if there are good results. I understand you cannot afford a DAN right now so here is what I would do in your position: 1) Start educating yourself as much as possible. This is a great resource and helps you walk through these very steps: http://www.talkaboutcuringautism.org/index.php 2) Remove milk from the diet. This sounds easy but it isn't. It was the most effective for us, however. Milk is in so many products you won't believe it! It is used in meats to tenderize, for example so even bacon has it in it. Do internet searches on casein so you can learn all of the different names to avoid (lactic acid, whey, etc.). You will become an expert label reader. 3) Start supplements. You need a good quality multi-vitamin. We use Kirkman's with Xylitol: http://kirkmanlabs.com/ViewProductDetails@Product_ID@... 4) A DAN would be able to tell you what other vitamins/minerals your child needs. However, almost all of our kids need: MB12 = methylcobalamin B 12. Regular B12 doesn't usually do the trick because our kids can't break it down. That is where the "MB" comes in. Many parents use the shots for this. We use Bluebonnet tablets from Whole Foods. 5) Other good supplements to start are D3, C, and Omega-3s. I would not recommend calcium as our kids have a difficult time processing this. 6) Remove gluten from the diet. Some estimate that it takes as long as 6 months for gluten to completely leave the body so you have to give this some time before you say it works or not. 7) Use only organic for meats and most fruits/vegetables. The rule for fruits is that if it is sweet, it has a lot of pesticides because bugs like sugar as much as humans do. So, for example, you can probably skimp on bananas since they aren't too sweet and have a thick, removable skin, but not on the grapes. 8) Continue removing other common allergens (soy, nuts, eggs, etc.) if you still see problems with bowels and or behavior. 9) Once your child is somewhat physically stable, choose behavioral, speech and/or occupational therapies as you see fit. That's my take on it. But just remember that "it's a marathon, not a race". It is rare that any of these changes will be a huge "wow" overnight but if you are persistent, you're bound to see improvements. -Sandy H. To: Texas-Autism-Advocacy Sent: Mon, January 3, 2011 10:36:44 AMSubject: Re: new here these are such good conversations with such good info but I am totally overwhelmed. I need steps broken down. what do I do today, tomorrow, the next day. What test do I first start with? What foods do I need to buy? What supplements do I buy? What do I do when my son is screaming crying that he is hungry but I dont know what food to give him to make sure he gets full and isnt hungry 10 minutes later? These are all really rhetorical questions but what is really going thru my head reading all these emails. Does this Dr. Rao automatically do the tests you mentioned below or do you have to ask for them specifically? Thanks. Re: new here Dolly,I would not recommend Dr. Kotsonis. I suggest you consider Dr. or Dr. Rao. I will no longer recommend IV chelation, as after having done this with our son and continuing to research, I am inclined to agree with Dr. Andy Cutler that IV chelation is dangerous and can make things worse. If you decide to do chelation, research the AC Protocol which is low dose and much safer. If you ask a DAN! they will be against it as that is less money for them, so you have to research and read and decide for yourself which way to go, but my son had terrible asthma reactions to IV chelation. It was very scary, and his stimming returned with IV chelation.I do urge you to go casein free. It may not be easy. We took casein away first, and our son went through horrible withdrawal for three weeks. I was in tears at the end of each of those days, but then things started getting better. Then we removed gluten and saw fewer withdrawal symptoms. The most dramatic change came months later when we retested opiate peptides and they were still high. His doctor recommended we also remove soy, so we did, and then dramatic changes started to occur. Our son said his first sentence. We have been gf/cf/sf ever since.I know a lot of the behaviors you describe tend to come from yeast overgrowth and possibly incomplete breakdown of proteins. There are enzymes you can buy to help with digesting proteins. You can break them open and mix in apple sauce if he cannot swallow pills, but you must be careful not to get the powder on the skin or in eyes as it can damage or burn these.I know the same things don't work for all children, but it is worth a try to try the things that have worked for others. They used to say if the diet did not work in a short while then quit, but now the thinking is that it is worth it to give the diet a two-year trial before quitting. has great knowledge about diet, and the Body Ecology diet makes a lot of sense, as well. One thing is for sure, the standard American diet is crap for our kids. It's crap for us, as well. We all need to think about what we are putting in our bodies and seek to put "real" nutrition in the body.Are you treating for yeast? Giving biotin makes it easier to destroy the bad yeast in the gut. Giving grapefruit seed Extract (GSE) and some other things can help, as well. My son demonstrated a dramatic improvement after being given a broad spectrum antibiotic -- he sat up and said all the words he had known before regression on the fourth day of treatment. There was a study showing that children with autism improved after being given vancomycin IM, but they regressed to base line once the antibiotic was ceased. Our son did regress after the antibiotic was stopped, but not to baseline. He still retained some one syllable words and we built on this.Dr. Rao in Plano or Dr. would be the best choices in this area, but have Dr. Rao be very up front about your out of pocket expenses. If I were just starting out but knew what I know now, I would definitely get an opiate peptide test, check copper/zinc ratio, check for overgrowth of yeast and bacteria, and get a CBC to specifically check the neutrophil count. I wouldn't get a urinary prophyrins test for heavy metals. I would opt for a hair test from DDI --You can order that one directly. then you could apply certain "rules of counting" to determine if the body is over burdened with heavy metals. I think the hair test is the most accurate way.I'm not a doctor --just a mom whose "been there," and many of the things your son is doing point to yeast overgrowth. Yeast has been a long time, constant problem for my son. Once he was having his lung problems and the antibiotics weren't working. Nothing was working, and I finally said to his pediatrician that I thought the infection was fungal. He looked surprised but was will to try putting him on a course of anti fungal medication. It cleared his lungs right up. Acetyl-L-carnitine was the most important amino acid we ever put our son on. Studies from Berkley have shown this amino acid to be a powerful healer. It has the ability to go inside cells and repair mitochondria.ALA is used to chelate children. Berkley's study combined ALA and Acetyl-L-Carnitine with amazing results. In their study, very old mice began to act like very young mice over time. But if you ever use ALA, it is a powerful chelator and must be dosed on its half-life of three hours around the clock for seventy-two hours straight. If you don't follow that time line, then it can make things worse, so one must decide to be very committed to that protocol. You can learn more about this form of chelation on the Autism-Mercury group. A lot fo people -- not just children with ASD are getting better with this form. Adults are losing their "brain fog," but adults must have amalgam fillings removed first.I always think it is very important to get these kids' copper levels checked ASAP as many children with this disorder have difficulty regulating copper levels, and excess copper levels over time can cause permanent damage to liver, kidneys, and brain. We found out early on (during the first year after regression) that our son's copper levels were very high. 's disease must be ruled out, but is usually not found in our kids. Extra zinc supplementation chelates the excess copper out.Dr. Rao is in Plano. His number is . I'm not sure what Dr. 's number is. Maybe someone else here knows? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Haven, thank you for your response. Actually my twin pregnancy was the result of ivf after years and years of trying to conceive. I was 34 when I got pg, and 35 when I had them. did not have any recent shots before he died. The only logical explanation we could find was from 's heart dr. He said there is a huge possibility it could have been something called long qt syndrome. He said that causes sudden death and there are no symptoms. Just like when you hear of people just dropping dead? The only good thing in our favor is that they were not identical. I think I'm going to try that diet again. I'll eliminate stuff slowly. I looked at the website and there is a lot of stuff he might eat. He's loves spicy salsa and garlic salt. Most of his fruits we buy are organic. He will eat carrots, celery,tomatoes and broccoli. His ears and and cheeks are not red. He does have a high tolerance to pain. He's had a hair line fracture in his foot when he was 4. He just kept holding his knee and limping. We thought it was his knee or leg, but the ortho dr. said it was his foot. They didn't not put a cast on, but put one of those boots on. It was hell trying to put it on. He screamed the entire time. He is on the waiting list for therapy 2000. Subject: Re: new hereTo: Texas-Autism-Advocacy Date: Sunday, January 2, 2011, 11:07 PM ,My heart goes out to you! My son was a twin, too, but I miscarried his twin early in the pregnancy. I didn't know there were twins at the time, I thought I was miscarrying one baby, and since it had taken me a lifetime to get pregnant, and being forty at the time, I was beside myself thinking I had lost my one and only chance to have a child. That was a horrible day! But then my husband took me in to the doctor's and my HCG was very high, so they decided to do a sonogram, and low and behold there was another heartbeat! You said your son's twin died of SIDS at twenty months. I cannot even imagine going through such horrendous pain as you have experienced. I would like to ask if at the time this happened, had any vaccinations been recent? Before your son ever gets new teachers, the school is supposed to devise a transition plan for him to prepare him for the change.My son used to defecate on the floor, too. What a jerk that carpet installer was!!! God I hate that people do not understand our situations! My son did not take naps either, and he rarely slept for more than two hours at a stretch. I hated for him to take a nap because if he did, he would awaken in horrible pain and scream for more than two hours. I mean blood curdling screaming. I would try everything I knew to calm him down, but nothing worked. One day I put him in the carriage and was walking down our street trying this to see if he would calm down. I had been at trying various things for an hour and a half, and one of our neighbors came by and she acted like I must be doing something bad to my child! She called me every day for the next few days. She just didn't get it. Then he had a period where he kept getting hurt -- well, first he had a meltdown at our neighbors and when I put him in the truck I watched him get into his car seat, and then I turned for a split second to say bye to my neighbor, and my son leaped head first out the door! He fell to the ground; I wasn't able to catch him in time. I felt horrible! Then we got home and I noticed he was holding his hand funny. I thought he broke his wrist, but he just broke his thumb. Then in the same month, I was putting clothes a way in our room and I turned round just in time to find that he had found a bottle of some kind of cleaning oil in my husband's bottom drawer and he had the top off!!! I freaked. I couldn't tell if he had drank any. The stuff smelled like gasoline. I called poison control and they thought he would be fine, but I took him to emergency anyway.Then not two weeks later my husband and I were sitting with him on the couch, and Ethan slipped to get off and BARELY bumped his leg on the coffee table and then couldn't walk! With so many trips to the emergency room in a month, we were worried someone would call CPS. The hospital couldn't find a break in his leg, so then we took him to a specialist, and he couldn't see a break but said it could be a hairline fracture so he cast his leg for four weeks. The cast came off, and still Ethan couldn't walk, so we went to ish Rite, and they couldn't figure anything out either. It took two months for him to put weight on that leg again! This added to the numerous ER visit for pneumonia, bronchitis, anaphylaxis, fecal impaction....I don't know how I ever survived without having a nervous breakdown. His ER file alone is over four hundred pages! It all started out with one ear infection after another. I mean, he regressed immediately after vaccination. he lost all speech immediately, and then he started to get sick all the time. Until a year and a half ago, he was sick with a fever every two to three weeks like clock work. Diet and metabolic supports have done a lot to help him, and taking him out of public school and home schooling has helped even more health wise. Does your son have red ears or cheeks? This can be a sign that gluten casein or soy is not good for him. I know would say that the fact he craves red meat is a sign to take it away, and I am inclined to agree. You need help to figure these things out, and I would urge you to take him to see DR. . He has an office up in Frisco, I think. I know he has his main office in Austin. Dr. accepts Medicaid, I think. As far as speech, PT, and OT, if your son is on medicaid, you can call a home health service and try to get services through them. We use At Home Healthcare and Therapy 2000. We have been blessed with wonderful therapists. I urge you to meet . It is very expensive to go all the way to Austin. Regarding the gf/cf/sf diet, there is an inexpensive way to do it -- just think about getting back to basics : a meat, a fruit, a vegetable --no coatings, no dairy added. You can use olive oil for sauteing but not for high heat. If you decide to give it a try again, just eliminate one thing at a time until you are comfortable with that elimination, then you can move on to the next elimination. We stretched it over a year, going casein free first, then gluten a few months later and then soy free several months after that. There is a test for opiate peptides in the urine you could have done before you decide. If the peptides are high in the urine, your child needs to be on the diet. If the peptides are low, then there may be no need, but cleaning up the diet on the whole is a very good idea. You have been through so much. You have come to a good group for help and support. Hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Haven to me a happy kid will have better immune function and don't we all learn better when we are happy? I'm happy for you both! My kids loved homeschool and now love their Montessori campus. All the best at your social group. > > , > > You are right. the system is so broken. I was just naive enough to spend > years thinking I could change it and make it better. I still want to, but I > am soooo glad not to have to deal with that crap any more. I am so much > happier home schooling! I get so excited watching him make progress. > Tomorrow evening we are going for our first class at IASIS in ville. > It's a long drive once a week, but he will get to be in a social skills > class with other children, and I've heard great things bout it. > > The year is going great! He is reading better and better every day, > learning math, writing little stories and paragraphs, and he is gaining > confidence. Life is good. > > I was so apprehensive about home schooling --worried my son and I might just > get sick of being together all the time, but we both love it. He tells me I > am a good teacher:). He read a story about a baby bird looking for its > mother, and now he calls me " Mother bird, " and I call him " Baby bird. " He > comes and hugs me and says, " I wrap my wings around you. " > > God, I love my kid! He is the most genuine human being I have ever met! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Lorree,I would devise a plan and TELL Dr. Rao what you want done, after asking and finding out what your out of pocket expense will be to have it done.Of course, if out of pocket expense is of concern, I would recommend Dr. since he takes medicaid. You have to be assertive because doctors have their own agendas, too. I think Dr. pushes towards treatment fo viruses, while Dr. Rao pushes towards IV chealtion, which I advise you never to consider. You need to get a baseline of where your child is at regarding opiates, copper, bacteria, yeast, deficiencies, and neutrophil count. His copper level is a very important thing to rule out. You need to know ASAP if your child has excess copper. Then you need to know if his opiate peptides are high and your child needs to be gf/cf/sf. You would do the diet in steps so you don't get overwhelmed by the change. Then you need to know if your child has excess bad bacteria and yeast and if so, this needs to be treated and controlled. Then I would consider doing a DDI hair test to determine heavy metal burden. Do NOT let a doctor talk you into doing a chelation challenge test. Do a hair test and then you can apply the " rules of counting. " I can help you do this when the time comes. If blood is being drawn for other tests, go ahead and have a CBC done. You want to know the status of your child's neutrophil count.Don't think about this all at once. Pick ONE thing; take ONE step. Keep a treatment/food diary. You want to add or take away one thing at a time and make notes of changes in behavior or symptoms so you can track what works and what doesn't. Kirkman laboratory, www.kirkmanlabs.com, sells a beginner pack for metabolic supports. Later you can decide if you wnat to use metabolic supports from elsewhere.We focused on diet and metabolic supports long before we did chelation. The First thing we did was add metabolic supports: vitamins, extra C, magnesium, calcium, milk thistle, acetyl-L-carnitine, B 12.Then we started the diet, which took about a year to completely implement, but that is only because we found out that we needed to remove soy. If you know ahead of time you want to do this, then you can implement gf/cf/sf in a few months --whatever pace you are comfortable with. Then we found out our son's copper level was very high. 's disease had to be ruled out and then he was put on extra zinc to lower his copper levels.Then we continued cleaning up the diet, eliminating sugar, dyes, preservatives, nitrites and sulfites, and adding probiotics and essential fatty acids. At the same time we were using our own version of an ABA/Floor time program and our son was getting extra speech therapy.Then our son went on methocobalamin injections for a while (vitamin B 12 shots). Now we have added biotin, GSE, and vitamin D3.We did do IV chelation and would never do that again. it brought back stimming behaviors and caused respiratory reactions. We will do the Andy Cutler (AC) protocol for chelating mercury out using ALA only. Diet is extremely important. If you do nothing else, clean up the diet. Get rid of junk and processed foods. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Love the Bichon story! We have a ½ hound dog and ½ who knows what that is very smart too. She is plays differently with our two boys. She is real rough and tumble with the older “typical” son but very gentle and tolerant with our son with autism. Once the older son was riding his brother’s bicycle and she had a fit. Kept barking and barking and finally grabbed his pants leg and pulled him off it. The amazing part to me is how she knew it was his little brother’s bike. Both bikes are identical and bought at the same time!!!Tonya From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of ShermanSent: Monday, January 03, 2011 7:23 AMTo: Texas-Autism-Advocacy Subject: Re: new here My son also jumped on a glass coffee table and went through. At the ER he said " No standing on the window! " He had 15 stitches. We had a high pain tolerance too until chelation and the gluten free diet now its more normal. Quite a relief as I know many children who have not done this and can step on glass and not even flinch. TrinaPS. Yesterday Matt put our Bichon in the shower. He may have been too rough with him because the next moment I see Matt running and laughing with said Bichon in fast pursuit. Matt is yelling " Snakebite! Look out! " soooooo funny. Bichon will also nip his ankles if he wrestles with his big brother. Bichon is very smart to know who is the aggressor. Our son was pretty accident prone too early on but not to the extent you describe. The worst was jumping down the pit group (during our Tigger phase) and right through the glass top end table. Amazingly, he didn’t even get a scratch that time!! Another day I was soaking his cups with valves in a bleach water solution and he dipped a glass full. Don’t know if he actually swallowed any or not, but off to emergency anyway. Another time he kicked a rock and ripped his big toe nail off but barely cried. That’s the scariest part – the high pain tolerance. It is a real guessing game as to whether he is hurt or sick or not. Tonya From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of Haven DeLaySent: Sunday, January 02, 2011 11:07 PM To: Texas-Autism-Advocacy Subject: Re: new here , My heart goes out to you! My son was a twin, too, but I miscarried his twin early in the pregnancy. I didn't know there were twins at the time, I thought I was miscarrying one baby, and since it had taken me a lifetime to get pregnant, and being forty at the time, I was beside myself thinking I had lost my one and only chance to have a child. That was a horrible day! But then my husband took me in to the doctor's and my HCG was very high, so they decided to do a sonogram, and low and behold there was another heartbeat!You said your son's twin died of SIDS at twenty months. I cannot even imagine going through such horrendous pain as you have experienced. I would like to ask if at the time this happened, had any vaccinations been recent?Before your son ever gets new teachers, the school is supposed to devise a transition plan for him to prepare him for the change.My son used to defecate on the floor, too. What a jerk that carpet installer was!!! God I hate that people do not understand our situations!My son did not take naps either, and he rarely slept for more than two hours at a stretch. I hated for him to take a nap because if he did, he would awaken in horrible pain and scream for more than two hours. I mean blood curdling screaming. I would try everything I knew to calm him down, but nothing worked. One day I put him in the carriage and was walking down our street trying this to see if he would calm down. I had been at trying various things for an hour and a half, and one of our neighbors came by and she acted like I must be doing something bad to my child! She called me every day for the next few days. She just didn't get it. Then he had a period where he kept getting hurt -- well, first he had a meltdown at our neighbors and when I put him in the truck I watched him get into his car seat, and then I turned for a split second to say bye to my neighbor, and my son leaped head first out the door! He fell to the ground; I wasn't able to catch him in time. I felt horrible! Then we got home and I noticed he was holding his hand funny. I thought he broke his wrist, but he just broke his thumb.Then in the same month, I was putting clothes a way in our room and I turned round just in time to find that he had found a bottle of some kind of cleaning oil in my husband's bottom drawer and he had the top off!!! I freaked. I couldn't tell if he had drank any. The stuff smelled like gasoline.I called poison control and they thought he would be fine, but I took him to emergency anyway.Then not two weeks later my husband and I were sitting with him on the couch, and Ethan slipped to get off and BARELY bumped his leg on the coffee table and then couldn't walk! With so many trips to the emergency room in a month, we were worried someone would call CPS. The hospital couldn't find a break in his leg, so then we took him to a specialist, and he couldn't see a break but said it could be a hairline fracture so he cast his leg for four weeks. The cast came off, and still Ethan couldn't walk, so we went to ish Rite, and they couldn't figure anything out either.It took two months for him to put weight on that leg again! This added to the numerous ER visit for pneumonia, bronchitis, anaphylaxis, fecal impaction....I don't know how I ever survived without having a nervous breakdown. His ER file alone is over four hundred pages!It all started out with one ear infection after another. I mean, he regressed immediately after vaccination. he lost all speech immediately, and then he started to get sick all the time. Until a year and a half ago, he was sick with a fever every two to three weeks like clock work. Diet and metabolic supports have done a lot to help him, and taking him out of public school and home schooling has helped even more health wise.Does your son have red ears or cheeks? This can be a sign that gluten casein or soy is not good for him. I know would say that the fact he craves red meat is a sign to take it away, and I am inclined to agree.You need help to figure these things out, and I would urge you to take him to see DR. . He has an office up in Frisco, I think. I know he has his main office in Austin. Dr. accepts Medicaid, I think.As far as speech, PT, and OT, if your son is on medicaid, you can call a home health service and try to get services through them. We use At Home Healthcare and Therapy 2000. We have been blessed with wonderful therapists.I urge you to meet . It is very expensive to go all the way to Austin. Regarding the gf/cf/sf diet, there is an inexpensive way to do it -- just think about getting back to basics : a meat, a fruit, a vegetable --no coatings, no dairy added. You can use olive oil for sauteing but not for high heat. If you decide to give it a try again, just eliminate one thing at a time until you are comfortable with that elimination, then you can move on to the next elimination. We stretched it over a year, going casein free first, then gluten a few months later and then soy free several months after that.There is a test for opiate peptides in the urine you could have done before you decide. If the peptides are high in the urine, your child needs to be on the diet. If the peptides are low, then there may be no need, but cleaning up the diet on the whole is a very good idea.You have been through so much. You have come to a good group for help and support. Hang in there! Quote Link to comment Share on other sites More sharing options...
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