Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Your experience sounds like our experience with them about 13 years ago. Although I don't recall them giving us an IQ. About six months later, Aldine school district gave my son an IQ of " below 20 " after admitting that they weren't able to actually perform the IQ test on him due to lack of cooperation. I wonder why these professionals feel the need to give an IQ if they can't actually test it? And to say that this will remain the child's IQ permanently is malpractice. Sad to think that Meyer is still considered a good place for developmental testing. My advice (which I'm sure you've already determined) is to chunk the report into a file and go seek help elsewhere. It makes for a good laugh years later when your child's IQ can actually be tested. My favorite " showed you " story is of a friend of mine's son who the testing doctor said would never walk, talk or see. About ten years later, he walked into the doctor's office, held up the report pointing to the part with the dire prognosis and said " you were wrong! " Gaylen ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Your experience sounds like our experience with them about 13 years ago. Although I don't recall them giving us an IQ. About six months later, Aldine school district gave my son an IQ of " below 20 " after admitting that they weren't able to actually perform the IQ test on him due to lack of cooperation. I wonder why these professionals feel the need to give an IQ if they can't actually test it? And to say that this will remain the child's IQ permanently is malpractice. Sad to think that Meyer is still considered a good place for developmental testing. My advice (which I'm sure you've already determined) is to chunk the report into a file and go seek help elsewhere. It makes for a good laugh years later when your child's IQ can actually be tested. My favorite " showed you " story is of a friend of mine's son who the testing doctor said would never walk, talk or see. About ten years later, he walked into the doctor's office, held up the report pointing to the part with the dire prognosis and said " you were wrong! " Gaylen ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Your experience sounds like our experience with them about 13 years ago. Although I don't recall them giving us an IQ. About six months later, Aldine school district gave my son an IQ of " below 20 " after admitting that they weren't able to actually perform the IQ test on him due to lack of cooperation. I wonder why these professionals feel the need to give an IQ if they can't actually test it? And to say that this will remain the child's IQ permanently is malpractice. Sad to think that Meyer is still considered a good place for developmental testing. My advice (which I'm sure you've already determined) is to chunk the report into a file and go seek help elsewhere. It makes for a good laugh years later when your child's IQ can actually be tested. My favorite " showed you " story is of a friend of mine's son who the testing doctor said would never walk, talk or see. About ten years later, he walked into the doctor's office, held up the report pointing to the part with the dire prognosis and said " you were wrong! " Gaylen ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Ha! I was wondering what to do with those papers - now I know to at least hang on to them for special treatment at amusement parks! That's great! > > That is almost identical to our experience at the University of > Washington Autism Center in Seattle. The thing with the boring > blocks and pegs and such is part of a specific evaluation test called > the " ADOS. " Clearly, whoever designed the ADOS wanted to pick toys > that almost no children would be remotely interested in, especially > autistic children. They are trying to see if the child will use the > boring toys in pretend play (e.g. build a house with the blocks) > and/or if they will ask their parents for help or simply grab their > hands and use them as a tool to help them (my son did the latter). > > As far as the IQ part, that is ridiculous that the doctor tried to > identify your son's IQ through that test. It is not designed to > measure IQ. The only test that I have heard of that is acceptable to > measure IQ for autistic children is the C-TONI, which I don't think > can even be administered until the child is 6 or 7. It measures IQ > via " nonverbal intelligence, " whatever that means. > > In general, most people I talk to never get a very good prognosis nor > very good advice from the centers their children get diagnosed > through. Certainly they will never tell you that there are ways your > child can improve and get significantly better, such as ABA or > biomedical treatments. What was most helpful for our family was to > find like-minded people in our area through a support group that > pointed us in the direction of getting treatment to help our son. > The only thing I've ever used the diagnostic papers from the UW > Autism Center for are cutting lines at the airport and at amusement > parks - you can get " special treatment " if your child has a > disability. > > - > > Jimmy 10/12/2001 > > > > > > Hi, I'm new to the group. I thought I would share a little true > > story with y'all. > > > > The Meyer Center (part of Texas Children's Hospital) is supposed to > > be the premier developmental pediatrics center in Houston and > > perhaps Texas. Nevertheless, we had a very bad experience down > > there last November. I thought I would share some of our > > experiences visiting the Meyer Center so here is my trip report. > > BTW, Dr. X is Dr. Nirupama Madduri. > > > > --- Tom Marking > > > > > ********************************************************************* > > ** > > > > Meyer Center Trip Report > > Thursday, November 9, 2006 > > > > ************************************************************ > > > > Name: Meyer Center for Developmental Pediatrics > > Affiliation: Texas Children's Hospital > > Address: Clinical Care Center, 16th Floor > > 6701 Fannin St. > > Houston, Texas 77030 > > Phone: > > (appointments) > > Web Site: http://www.texaschildrenshospital.org/ > > carecenters/DevelopmentPediatrics/Default.aspx > > > > Patient: Zachary > > Age: 3 years, 11 months > > > > The Meyer Center at Texas Children's Hospital performs > > a variety of diagnostic and evaluation services in the area > > of developmental pediatrics. We first received a referral > > to the Meyer Center from our pediatrician back in May 2006 > > which would be 6 months ago. We received paperwork from > > the Meyer Center sometime in the June to July time period. > > An initial appointment was scheduled for February 2007 which > > was the earliest available. This would have been 9 months > > after the initial referral. > > > > Due to cancellations we were able to move up our > > schedule although up until the last week we thought our > > appointment was going to be on November 22. Anyway, last > > week Texas Children's Hospital called and informed us that > > the doctor (which we shall refer to here as Doctor X) would > > not be available on the scheduled date and we would have to > > move the appointment up to November 9. Despite numerous > > attempts to get them to return my calls at my work number > > they kept on calling my wife at our home number. > > > > Anyway, today we had an appointment from 8:30 to 10:30 > > a.m. We were told to arrive 15 minutes early to fill out > > paperwork. Since we don't actually live in Houston but > > rather Katy, this should have been about an hour commute for > > us. To play it safe we left the house at 7:00 a.m. > > Unfortunately it just happened to be one of those days where > > there was an accident on the HOV (high occupancy vehicle) > > lane which were taking. We were stuck there with the > > traffic being stalled for about 30 minutes. We called > > the Meyer Center at around 8:00 a.m. to tell them the > > situation. They told us that we had to arrive by 9:00 a.m. > > or the appointment would be considered cancelled. > > > > Somehow we got lucky and the traffic started moving > > again. We got to Texas Children's at around 8:40 a.m. The > > Meyer Center is up on the 16th floor but you need to change > > elevators on the 3rd floor if you're coming from the parking > > garage. We filled out the insurance paperwork and we didn't > > have to wait very long before being ushered into a room > > where the nurse proceeded to measure Zack's vital statistics. > > She recorded his weight as 32 lbs. This was my first > > inkling of things to come since he actually weighs close to > > 37 lbs. > > > > Anyway, shortly thereafter we met Dr. X. Anyone who > > desires her real name can send me an e-mail offline and I > > will tell you. Her card says M.D., Department of Pediatrics, > > Assistant Professor. I'm not sure what kind of special > > training a developmental pediatrician receives. Anyway, > > she basically began by asking me and my wife about our son. > > It seemed that a lot of the questions we were asked were > > already included in the voluminous paperwork that we had to > > fill out months before. She didn't seem to be familiar with > > most of the answers we had already provided in the > > paperwork. > > > > Of course, our son Zack is notorious for giving us a > > hard time when we take him to new places, especially indoors. > > But this time he actually calmed down and stopped crying > > after about ten minutes. We brought his favorite food with > > us which is dried mango and he began to happily munch it. > > So this was a major improvement in his behavior only Dr. X > > didn't see it that way. We had brought a couple of items > > from home in order to calm our son down. One of them was > > a metal attachment from a cake mixer, the part that actually > > stirs the cake mix. The other was a little plastic turtle > > which we bought as a floatable bath toy. > > > > Dr. X brought out an assortment of blocks, puzzles, > > etc. It was all made of wood except for a plastic cup and > > it looked pretty banged up and old. There were some round > > pegs that could be inserted into a board and some cutout > > puzzle shapes like a square, circle, etc. that could be > > inserted into a board with the same shapes. Needless to > > say, Zack was entirely unimpressed with any of her > > paraphernalia. He ignored it completely and proceeded to > > rotate the cake mixer blade back and forth on the table. > > After a few minutes she suggested that we take it away from > > him and hide it so he would concentrate on her stuff. Well, > > he got pretty upset and was looking for both the cake mixer > > blade and the plastic turtle all over the room. Even when > > he could not find them he still had no interest in any of > > her stuff. > > > > There was a PC in the room and a screen saver was > > running. Zack now shifted his attention to it and he > > started playing with the mouse. I asked Dr. X if she wanted > > us to show her what Zack could do with the computer. I'm > > sure I could have found some screen savers he was familiar > > with so he could select the one he wanted. Dr. X wasn't > > interested. As far as Dr. X was concerned if he wouldn't > > play with her wooden blocks then nothing else mattered. > > > > So this went on for about a half hour or so. I think > > we were all getting a little bored including Zack. So, cut > > to the chase: Dr. X's diagnosis was delivered to us which is > > the following: Moderate to Severe Autism, no talk of the > > spectrum here, this is full-blown autism we're talking about > > here. Zachary has the language capability of an 8-month old > > child. Somehow this translated into an IQ of around 20 > > (if you do the math, 8 months divided by 47 months times 100 > > is 17). He will always have an IQ of about the same. I > > suppose I should be happy for him since at the ripe old age > > of 100 he should be chasing young women like he's a 20-year > > old. > > > > Well, I must admit that actually hearing this said hit > > me like a direct blow to the solar plexus. Even though I > > had been expecting some sort of diagnosis on the spectrum, > > actually hearing it firsthand, particularly the part about > > the IQ of 20, was still shocking. I don't think there is > > anything that can prepare you for such a thing. Suddenly, > > my son's whole future flashed before my eyes - no graduation > > from high school, no college, no wedding, finally ending his > > days like Rain Man in some government funded mental > > institution after his parents have passed away. That all > > flashed through my mind. What a terrible feeling that is! > > > > Well, after this crushing news was delivered to us they > > sent in a Social Worker whom we shall refer to as Y. Her > > card says LMSW which I have no idea what that means. Miss > > Y gave us voluminous documentation on government programs, > > local support groups, etc., etc. concerned with autism. All > > of our specific questions about what types of therapy would > > be appropriate were never really answered definitively. > > > > I did ask Dr. X if she was familiar with the work of > > Dr. Mac's Communicating Partners. She said she had > > heard of him but I could tell she was pretty much clueless > > about his approach to late-talking children. I asked about > > ABA therapy and pretty much the only thing I was told is > > that it is very expensive and it doesn't focus on > > communication skills. > > > > Well, that's about it. Dr. X will write up her > > findings and send them to us within three days. We did do > > some blood work for some genetic screenings before we left. > > I guess they are going to look for Fragile X and other > > disorders. I don't know why they didn't do this two years > > ago when we had a lot of blood work done by the Genetics > > Department at Texas Children's Hospital, but they didn't. > > They are recommending an ABS (Auditory BrainStem) hearing > > test for Zack but it would require sedating him. They are > > also recommending a MRI brain scan which would also require > > sedation. We haven't decided if we want to put our son > > through the ordeal of sedation since it seems to involve > > some kind of fasting beforehand. > > > > So anyway, perhaps some folks will feel I am being a > > little unfair in my comments on Dr. X. But one undisputable > > contradiction in her evaluation versus the school district > > is this. My son had a FIE (Full and Independent Evaluation) > > back in March 2006 before he was admitted to PPCD. I looked > > it up and on page 2 it says the following: > > > > " Zachary's intellectual functioning appears to be > > within the average range. " > > > > How can his intellectual functioning be within the average > > range and his IQ be 20? Direct contradiction unless he > > has dropped 80 IQ points in the last 8 months. Also, I > > don't know too many 8-month old kids who can memorize the > > positions of all the songs on about 20+ CD's and who can > > navigate the Windows Explorer directory structure stopping > > at favorite directories and launching favorite applications. > > > > Therefore, in the spirit of the Rotten Tomatoes movie review > > web site, here is my rating of the Meyer Center: > > > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > > Freshness Rating: 10% > > > > > -- Peace, Staci http://gabesjourney-gabesmom.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Ha! I was wondering what to do with those papers - now I know to at least hang on to them for special treatment at amusement parks! That's great! > > That is almost identical to our experience at the University of > Washington Autism Center in Seattle. The thing with the boring > blocks and pegs and such is part of a specific evaluation test called > the " ADOS. " Clearly, whoever designed the ADOS wanted to pick toys > that almost no children would be remotely interested in, especially > autistic children. They are trying to see if the child will use the > boring toys in pretend play (e.g. build a house with the blocks) > and/or if they will ask their parents for help or simply grab their > hands and use them as a tool to help them (my son did the latter). > > As far as the IQ part, that is ridiculous that the doctor tried to > identify your son's IQ through that test. It is not designed to > measure IQ. The only test that I have heard of that is acceptable to > measure IQ for autistic children is the C-TONI, which I don't think > can even be administered until the child is 6 or 7. It measures IQ > via " nonverbal intelligence, " whatever that means. > > In general, most people I talk to never get a very good prognosis nor > very good advice from the centers their children get diagnosed > through. Certainly they will never tell you that there are ways your > child can improve and get significantly better, such as ABA or > biomedical treatments. What was most helpful for our family was to > find like-minded people in our area through a support group that > pointed us in the direction of getting treatment to help our son. > The only thing I've ever used the diagnostic papers from the UW > Autism Center for are cutting lines at the airport and at amusement > parks - you can get " special treatment " if your child has a > disability. > > - > > Jimmy 10/12/2001 > > > > > > Hi, I'm new to the group. I thought I would share a little true > > story with y'all. > > > > The Meyer Center (part of Texas Children's Hospital) is supposed to > > be the premier developmental pediatrics center in Houston and > > perhaps Texas. Nevertheless, we had a very bad experience down > > there last November. I thought I would share some of our > > experiences visiting the Meyer Center so here is my trip report. > > BTW, Dr. X is Dr. Nirupama Madduri. > > > > --- Tom Marking > > > > > ********************************************************************* > > ** > > > > Meyer Center Trip Report > > Thursday, November 9, 2006 > > > > ************************************************************ > > > > Name: Meyer Center for Developmental Pediatrics > > Affiliation: Texas Children's Hospital > > Address: Clinical Care Center, 16th Floor > > 6701 Fannin St. > > Houston, Texas 77030 > > Phone: > > (appointments) > > Web Site: http://www.texaschildrenshospital.org/ > > carecenters/DevelopmentPediatrics/Default.aspx > > > > Patient: Zachary > > Age: 3 years, 11 months > > > > The Meyer Center at Texas Children's Hospital performs > > a variety of diagnostic and evaluation services in the area > > of developmental pediatrics. We first received a referral > > to the Meyer Center from our pediatrician back in May 2006 > > which would be 6 months ago. We received paperwork from > > the Meyer Center sometime in the June to July time period. > > An initial appointment was scheduled for February 2007 which > > was the earliest available. This would have been 9 months > > after the initial referral. > > > > Due to cancellations we were able to move up our > > schedule although up until the last week we thought our > > appointment was going to be on November 22. Anyway, last > > week Texas Children's Hospital called and informed us that > > the doctor (which we shall refer to here as Doctor X) would > > not be available on the scheduled date and we would have to > > move the appointment up to November 9. Despite numerous > > attempts to get them to return my calls at my work number > > they kept on calling my wife at our home number. > > > > Anyway, today we had an appointment from 8:30 to 10:30 > > a.m. We were told to arrive 15 minutes early to fill out > > paperwork. Since we don't actually live in Houston but > > rather Katy, this should have been about an hour commute for > > us. To play it safe we left the house at 7:00 a.m. > > Unfortunately it just happened to be one of those days where > > there was an accident on the HOV (high occupancy vehicle) > > lane which were taking. We were stuck there with the > > traffic being stalled for about 30 minutes. We called > > the Meyer Center at around 8:00 a.m. to tell them the > > situation. They told us that we had to arrive by 9:00 a.m. > > or the appointment would be considered cancelled. > > > > Somehow we got lucky and the traffic started moving > > again. We got to Texas Children's at around 8:40 a.m. The > > Meyer Center is up on the 16th floor but you need to change > > elevators on the 3rd floor if you're coming from the parking > > garage. We filled out the insurance paperwork and we didn't > > have to wait very long before being ushered into a room > > where the nurse proceeded to measure Zack's vital statistics. > > She recorded his weight as 32 lbs. This was my first > > inkling of things to come since he actually weighs close to > > 37 lbs. > > > > Anyway, shortly thereafter we met Dr. X. Anyone who > > desires her real name can send me an e-mail offline and I > > will tell you. Her card says M.D., Department of Pediatrics, > > Assistant Professor. I'm not sure what kind of special > > training a developmental pediatrician receives. Anyway, > > she basically began by asking me and my wife about our son. > > It seemed that a lot of the questions we were asked were > > already included in the voluminous paperwork that we had to > > fill out months before. She didn't seem to be familiar with > > most of the answers we had already provided in the > > paperwork. > > > > Of course, our son Zack is notorious for giving us a > > hard time when we take him to new places, especially indoors. > > But this time he actually calmed down and stopped crying > > after about ten minutes. We brought his favorite food with > > us which is dried mango and he began to happily munch it. > > So this was a major improvement in his behavior only Dr. X > > didn't see it that way. We had brought a couple of items > > from home in order to calm our son down. One of them was > > a metal attachment from a cake mixer, the part that actually > > stirs the cake mix. The other was a little plastic turtle > > which we bought as a floatable bath toy. > > > > Dr. X brought out an assortment of blocks, puzzles, > > etc. It was all made of wood except for a plastic cup and > > it looked pretty banged up and old. There were some round > > pegs that could be inserted into a board and some cutout > > puzzle shapes like a square, circle, etc. that could be > > inserted into a board with the same shapes. Needless to > > say, Zack was entirely unimpressed with any of her > > paraphernalia. He ignored it completely and proceeded to > > rotate the cake mixer blade back and forth on the table. > > After a few minutes she suggested that we take it away from > > him and hide it so he would concentrate on her stuff. Well, > > he got pretty upset and was looking for both the cake mixer > > blade and the plastic turtle all over the room. Even when > > he could not find them he still had no interest in any of > > her stuff. > > > > There was a PC in the room and a screen saver was > > running. Zack now shifted his attention to it and he > > started playing with the mouse. I asked Dr. X if she wanted > > us to show her what Zack could do with the computer. I'm > > sure I could have found some screen savers he was familiar > > with so he could select the one he wanted. Dr. X wasn't > > interested. As far as Dr. X was concerned if he wouldn't > > play with her wooden blocks then nothing else mattered. > > > > So this went on for about a half hour or so. I think > > we were all getting a little bored including Zack. So, cut > > to the chase: Dr. X's diagnosis was delivered to us which is > > the following: Moderate to Severe Autism, no talk of the > > spectrum here, this is full-blown autism we're talking about > > here. Zachary has the language capability of an 8-month old > > child. Somehow this translated into an IQ of around 20 > > (if you do the math, 8 months divided by 47 months times 100 > > is 17). He will always have an IQ of about the same. I > > suppose I should be happy for him since at the ripe old age > > of 100 he should be chasing young women like he's a 20-year > > old. > > > > Well, I must admit that actually hearing this said hit > > me like a direct blow to the solar plexus. Even though I > > had been expecting some sort of diagnosis on the spectrum, > > actually hearing it firsthand, particularly the part about > > the IQ of 20, was still shocking. I don't think there is > > anything that can prepare you for such a thing. Suddenly, > > my son's whole future flashed before my eyes - no graduation > > from high school, no college, no wedding, finally ending his > > days like Rain Man in some government funded mental > > institution after his parents have passed away. That all > > flashed through my mind. What a terrible feeling that is! > > > > Well, after this crushing news was delivered to us they > > sent in a Social Worker whom we shall refer to as Y. Her > > card says LMSW which I have no idea what that means. Miss > > Y gave us voluminous documentation on government programs, > > local support groups, etc., etc. concerned with autism. All > > of our specific questions about what types of therapy would > > be appropriate were never really answered definitively. > > > > I did ask Dr. X if she was familiar with the work of > > Dr. Mac's Communicating Partners. She said she had > > heard of him but I could tell she was pretty much clueless > > about his approach to late-talking children. I asked about > > ABA therapy and pretty much the only thing I was told is > > that it is very expensive and it doesn't focus on > > communication skills. > > > > Well, that's about it. Dr. X will write up her > > findings and send them to us within three days. We did do > > some blood work for some genetic screenings before we left. > > I guess they are going to look for Fragile X and other > > disorders. I don't know why they didn't do this two years > > ago when we had a lot of blood work done by the Genetics > > Department at Texas Children's Hospital, but they didn't. > > They are recommending an ABS (Auditory BrainStem) hearing > > test for Zack but it would require sedating him. They are > > also recommending a MRI brain scan which would also require > > sedation. We haven't decided if we want to put our son > > through the ordeal of sedation since it seems to involve > > some kind of fasting beforehand. > > > > So anyway, perhaps some folks will feel I am being a > > little unfair in my comments on Dr. X. But one undisputable > > contradiction in her evaluation versus the school district > > is this. My son had a FIE (Full and Independent Evaluation) > > back in March 2006 before he was admitted to PPCD. I looked > > it up and on page 2 it says the following: > > > > " Zachary's intellectual functioning appears to be > > within the average range. " > > > > How can his intellectual functioning be within the average > > range and his IQ be 20? Direct contradiction unless he > > has dropped 80 IQ points in the last 8 months. Also, I > > don't know too many 8-month old kids who can memorize the > > positions of all the songs on about 20+ CD's and who can > > navigate the Windows Explorer directory structure stopping > > at favorite directories and launching favorite applications. > > > > Therefore, in the spirit of the Rotten Tomatoes movie review > > web site, here is my rating of the Meyer Center: > > > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > > Freshness Rating: 10% > > > > > -- Peace, Staci http://gabesjourney-gabesmom.blogspot.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 OMG! What's going on over there??? Is there anyone to report your experience to? Zack has parents that understand him, value him, and will be his best advocates for the long haul. You are a blessing to your son and he is one lucky little boy to have a father so involved. You don't need any intelligence test to know how incredibly bright your son is! He sounds like a chip off the old block! > > Yes, I know that one must beware of IQ tests for autistic kids. But > what the Meyer Center did was even worse. They deduced my son's IQ > without giving him an IQ test, but rather by looking at how he played > or didn't play with their blocks. They didn't even tell me they were > doing an ADOS test, if that's what it was. I should have let Zack > reboot their PC or perhaps their entire network. That might have > woke up those fools. > > Anyway, they took blood from Zack to do genetic screening such as > Fragile X, etc. A few months later they sent me a bill before we > even received the results. So we went round and round on that one > for months and months. I refused to pay the bill until I got the > results and they kept on sending me bills and no results. Finally, > we got the results after about six months. They were all negative. > > Then, they called us for a follow-up appointment in July. They sent > us some forms in the mail and they said that if we didn't submit the > forms by a certain date the appointment would be cancelled. So I > thought great, as I threw the forms in the trash. But then the week > before the appointment they called to confirm it and wanted me to > give them a reason for cancelling the appointment. What a bunch of > dopey people they have down their running that outfit. > > > > > > What a shame. Sounds like a bad experience all the way round. > Have you > > given the feedback to TCH/Meyer Center yet? There are some really > simple > > things they could change to make developmental testing so much > easier on our > > kids, but they first they need to hear what the problems are! > > > > > > > > My opinion about IQ tests is that you should always be skeptical. > It's > > verrrrrry difficult to get valid results when there are so many > other > > variables at play, such as the testing environment, new objects in > the > > environment, the person conducting the assessment, the child's > emotional > > state during testing, the child's level of attention, and behavioral > > challenges. If you can't get a valid test result, why even bother > doing an > > IQ test? And, if you really want to know your child's cognitive > strengths > > and weaknesses (for example, to decide on teaching strategies), it > might > > actually be preferable to get a neuropsych eval, not an IQ test. > > > > > > > > If you decide to pursue the MRI, TCH will work with you to get an > early > > morning appointment, so the fasting issue is not such a big deal. > However, > > it might take several months to get your preferred time slot. > > > > > > > > Geraldine > > > > > > > > _____ > > > > From: Texas-Autism-Advocacy <Texas-Autism-Advocacy%40yahoogroups.com> > > [mailto:Texas-Autism-Advocacy <Texas-Autism-Advocacy%40yahoogroup\ s.com>] > On Behalf Of Tom > Marking > > Sent: Tuesday, August 28, 2007 8:25 AM > > To: Texas-Autism-Advocacy <Texas-Autism-Advocacy%40yahoogroups.com> > > Subject: Meyer Center Trip Report > > > > > > > > Hi, I'm new to the group. I thought I would share a little true > > story with y'all. > > > > The Meyer Center (part of Texas Children's Hospital) is supposed to > > be the premier developmental pediatrics center in Houston and > > perhaps Texas. Nevertheless, we had a very bad experience down > > there last November. I thought I would share some of our > > experiences visiting the Meyer Center so here is my trip report. > > BTW, Dr. X is Dr. Nirupama Madduri. > > > > --- Tom Marking > > > > > ********************************************************************* > > ** > > > > Meyer Center Trip Report > > Thursday, November 9, 2006 > > > > ************************************************************ > > > > Name: Meyer Center for Developmental Pediatrics > > Affiliation: Texas Children's Hospital > > Address: Clinical Care Center, 16th Floor > > 6701 Fannin St. > > Houston, Texas 77030 > > Phone: > > (appointments) > > Web Site: http://www.texaschi > <http://www.texaschildrenshospital.org/> > > ldrenshospital.org/ > > carecenters/DevelopmentPediatrics/Default.aspx > > > > Patient: Zachary > > Age: 3 years, 11 months > > > > The Meyer Center at Texas Children's Hospital performs > > a variety of diagnostic and evaluation services in the area > > of developmental pediatrics. We first received a referral > > to the Meyer Center from our pediatrician back in May 2006 > > which would be 6 months ago. We received paperwork from > > the Meyer Center sometime in the June to July time period. > > An initial appointment was scheduled for February 2007 which > > was the earliest available. This would have been 9 months > > after the initial referral. > > > > Due to cancellations we were able to move up our > > schedule although up until the last week we thought our > > appointment was going to be on November 22. Anyway, last > > week Texas Children's Hospital called and informed us that > > the doctor (which we shall refer to here as Doctor X) would > > not be available on the scheduled date and we would have to > > move the appointment up to November 9. Despite numerous > > attempts to get them to return my calls at my work number > > they kept on calling my wife at our home number. > > > > Anyway, today we had an appointment from 8:30 to 10:30 > > a.m. We were told to arrive 15 minutes early to fill out > > paperwork. Since we don't actually live in Houston but > > rather Katy, this should have been about an hour commute for > > us. To play it safe we left the house at 7:00 a.m. > > Unfortunately it just happened to be one of those days where > > there was an accident on the HOV (high occupancy vehicle) > > lane which were taking. We were stuck there with the > > traffic being stalled for about 30 minutes. We called > > the Meyer Center at around 8:00 a.m. to tell them the > > situation. They told us that we had to arrive by 9:00 a.m. > > or the appointment would be considered cancelled. > > > > Somehow we got lucky and the traffic started moving > > again. We got to Texas Children's at around 8:40 a.m. The > > Meyer Center is up on the 16th floor but you need to change > > elevators on the 3rd floor if you're coming from the parking > > garage. We filled out the insurance paperwork and we didn't > > have to wait very long before being ushered into a room > > where the nurse proceeded to measure Zack's vital statistics. > > She recorded his weight as 32 lbs. This was my first > > inkling of things to come since he actually weighs close to > > 37 lbs. > > > > Anyway, shortly thereafter we met Dr. X. Anyone who > > desires her real name can send me an e-mail offline and I > > will tell you. Her card says M.D., Department of Pediatrics, > > Assistant Professor. I'm not sure what kind of special > > training a developmental pediatrician receives. Anyway, > > she basically began by asking me and my wife about our son. > > It seemed that a lot of the questions we were asked were > > already included in the voluminous paperwork that we had to > > fill out months before. She didn't seem to be familiar with > > most of the answers we had already provided in the > > paperwork. > > > > Of course, our son Zack is notorious for giving us a > > hard time when we take him to new places, especially indoors. > > But this time he actually calmed down and stopped crying > > after about ten minutes. We brought his favorite food with > > us which is dried mango and he began to happily munch it. > > So this was a major improvement in his behavior only Dr. X > > didn't see it that way. We had brought a couple of items > > from home in order to calm our son down. One of them was > > a metal attachment from a cake mixer, the part that actually > > stirs the cake mix. The other was a little plastic turtle > > which we bought as a floatable bath toy. > > > > Dr. X brought out an assortment of blocks, puzzles, > > etc. It was all made of wood except for a plastic cup and > > it looked pretty banged up and old. There were some round > > pegs that could be inserted into a board and some cutout > > puzzle shapes like a square, circle, etc. that could be > > inserted into a board with the same shapes. Needless to > > say, Zack was entirely unimpressed with any of her > > paraphernalia. He ignored it completely and proceeded to > > rotate the cake mixer blade back and forth on the table. > > After a few minutes she suggested that we take it away from > > him and hide it so he would concentrate on her stuff. Well, > > he got pretty upset and was looking for both the cake mixer > > blade and the plastic turtle all over the room. Even when > > he could not find them he still had no interest in any of > > her stuff. > > > > There was a PC in the room and a screen saver was > > running. Zack now shifted his attention to it and he > > started playing with the mouse. I asked Dr. X if she wanted > > us to show her what Zack could do with the computer. I'm > > sure I could have found some screen savers he was familiar > > with so he could select the one he wanted. Dr. X wasn't > > interested. As far as Dr. X was concerned if he wouldn't > > play with her wooden blocks then nothing else mattered. > > > > So this went on for about a half hour or so. I think > > we were all getting a little bored including Zack. So, cut > > to the chase: Dr. X's diagnosis was delivered to us which is > > the following: Moderate to Severe Autism, no talk of the > > spectrum here, this is full-blown autism we're talking about > > here. Zachary has the language capability of an 8-month old > > child. Somehow this translated into an IQ of around 20 > > (if you do the math, 8 months divided by 47 months times 100 > > is 17). He will always have an IQ of about the same. I > > suppose I should be happy for him since at the ripe old age > > of 100 he should be chasing young women like he's a 20-year > > old. > > > > Well, I must admit that actually hearing this said hit > > me like a direct blow to the solar plexus. Even though I > > had been expecting some sort of diagnosis on the spectrum, > > actually hearing it firsthand, particularly the part about > > the IQ of 20, was still shocking. I don't think there is > > anything that can prepare you for such a thing. Suddenly, > > my son's whole future flashed before my eyes - no graduation > > from high school, no college, no wedding, finally ending his > > days like Rain Man in some government funded mental > > institution after his parents have passed away. That all > > flashed through my mind. What a terrible feeling that is! > > > > Well, after this crushing news was delivered to us they > > sent in a Social Worker whom we shall refer to as Y. Her > > card says LMSW which I have no idea what that means. Miss > > Y gave us voluminous documentation on government programs, > > local support groups, etc., etc. concerned with autism. All > > of our specific questions about what types of therapy would > > be appropriate were never really answered definitively. > > > > I did ask Dr. X if she was familiar with the work of > > Dr. Mac's Communicating Partners. She said she had > > heard of him but I could tell she was pretty much clueless > > about his approach to late-talking children. I asked about > > ABA therapy and pretty much the only thing I was told is > > that it is very expensive and it doesn't focus on > > communication skills. > > > > Well, that's about it. Dr. X will write up her > > findings and send them to us within three days. We did do > > some blood work for some genetic screenings before we left. > > I guess they are going to look for Fragile X and other > > disorders. I don't know why they didn't do this two years > > ago when we had a lot of blood work done by the Genetics > > Department at Texas Children's Hospital, but they didn't. > > They are recommending an ABS (Auditory BrainStem) hearing > > test for Zack but it would require sedating him. They are > > also recommending a MRI brain scan which would also require > > sedation. We haven't decided if we want to put our son > > through the ordeal of sedation since it seems to involve > > some kind of fasting beforehand. > > > > So anyway, perhaps some folks will feel I am being a > > little unfair in my comments on Dr. X. But one undisputable > > contradiction in her evaluation versus the school district > > is this. My son had a FIE (Full and Independent Evaluation) > > back in March 2006 before he was admitted to PPCD. I looked > > it up and on page 2 it says the following: > > > > " Zachary's intellectual functioning appears to be > > within the average range. " > > > > How can his intellectual functioning be within the average > > range and his IQ be 20? Direct contradiction unless he > > has dropped 80 IQ points in the last 8 months. Also, I > > don't know too many 8-month old kids who can memorize the > > positions of all the songs on about 20+ CD's and who can > > navigate the Windows Explorer directory structure stopping > > at favorite directories and launching favorite applications. > > > > Therefore, in the spirit of the Rotten Tomatoes movie review > > web site, here is my rating of the Meyer Center: > > > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > > Freshness Rating: 10% > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 OMG! What's going on over there??? Is there anyone to report your experience to? Zack has parents that understand him, value him, and will be his best advocates for the long haul. You are a blessing to your son and he is one lucky little boy to have a father so involved. You don't need any intelligence test to know how incredibly bright your son is! He sounds like a chip off the old block! > > Yes, I know that one must beware of IQ tests for autistic kids. But > what the Meyer Center did was even worse. They deduced my son's IQ > without giving him an IQ test, but rather by looking at how he played > or didn't play with their blocks. They didn't even tell me they were > doing an ADOS test, if that's what it was. I should have let Zack > reboot their PC or perhaps their entire network. That might have > woke up those fools. > > Anyway, they took blood from Zack to do genetic screening such as > Fragile X, etc. A few months later they sent me a bill before we > even received the results. So we went round and round on that one > for months and months. I refused to pay the bill until I got the > results and they kept on sending me bills and no results. Finally, > we got the results after about six months. They were all negative. > > Then, they called us for a follow-up appointment in July. They sent > us some forms in the mail and they said that if we didn't submit the > forms by a certain date the appointment would be cancelled. So I > thought great, as I threw the forms in the trash. But then the week > before the appointment they called to confirm it and wanted me to > give them a reason for cancelling the appointment. What a bunch of > dopey people they have down their running that outfit. > > > > > > What a shame. Sounds like a bad experience all the way round. > Have you > > given the feedback to TCH/Meyer Center yet? There are some really > simple > > things they could change to make developmental testing so much > easier on our > > kids, but they first they need to hear what the problems are! > > > > > > > > My opinion about IQ tests is that you should always be skeptical. > It's > > verrrrrry difficult to get valid results when there are so many > other > > variables at play, such as the testing environment, new objects in > the > > environment, the person conducting the assessment, the child's > emotional > > state during testing, the child's level of attention, and behavioral > > challenges. If you can't get a valid test result, why even bother > doing an > > IQ test? And, if you really want to know your child's cognitive > strengths > > and weaknesses (for example, to decide on teaching strategies), it > might > > actually be preferable to get a neuropsych eval, not an IQ test. > > > > > > > > If you decide to pursue the MRI, TCH will work with you to get an > early > > morning appointment, so the fasting issue is not such a big deal. > However, > > it might take several months to get your preferred time slot. > > > > > > > > Geraldine > > > > > > > > _____ > > > > From: Texas-Autism-Advocacy <Texas-Autism-Advocacy%40yahoogroups.com> > > [mailto:Texas-Autism-Advocacy <Texas-Autism-Advocacy%40yahoogroup\ s.com>] > On Behalf Of Tom > Marking > > Sent: Tuesday, August 28, 2007 8:25 AM > > To: Texas-Autism-Advocacy <Texas-Autism-Advocacy%40yahoogroups.com> > > Subject: Meyer Center Trip Report > > > > > > > > Hi, I'm new to the group. I thought I would share a little true > > story with y'all. > > > > The Meyer Center (part of Texas Children's Hospital) is supposed to > > be the premier developmental pediatrics center in Houston and > > perhaps Texas. Nevertheless, we had a very bad experience down > > there last November. I thought I would share some of our > > experiences visiting the Meyer Center so here is my trip report. > > BTW, Dr. X is Dr. Nirupama Madduri. > > > > --- Tom Marking > > > > > ********************************************************************* > > ** > > > > Meyer Center Trip Report > > Thursday, November 9, 2006 > > > > ************************************************************ > > > > Name: Meyer Center for Developmental Pediatrics > > Affiliation: Texas Children's Hospital > > Address: Clinical Care Center, 16th Floor > > 6701 Fannin St. > > Houston, Texas 77030 > > Phone: > > (appointments) > > Web Site: http://www.texaschi > <http://www.texaschildrenshospital.org/> > > ldrenshospital.org/ > > carecenters/DevelopmentPediatrics/Default.aspx > > > > Patient: Zachary > > Age: 3 years, 11 months > > > > The Meyer Center at Texas Children's Hospital performs > > a variety of diagnostic and evaluation services in the area > > of developmental pediatrics. We first received a referral > > to the Meyer Center from our pediatrician back in May 2006 > > which would be 6 months ago. We received paperwork from > > the Meyer Center sometime in the June to July time period. > > An initial appointment was scheduled for February 2007 which > > was the earliest available. This would have been 9 months > > after the initial referral. > > > > Due to cancellations we were able to move up our > > schedule although up until the last week we thought our > > appointment was going to be on November 22. Anyway, last > > week Texas Children's Hospital called and informed us that > > the doctor (which we shall refer to here as Doctor X) would > > not be available on the scheduled date and we would have to > > move the appointment up to November 9. Despite numerous > > attempts to get them to return my calls at my work number > > they kept on calling my wife at our home number. > > > > Anyway, today we had an appointment from 8:30 to 10:30 > > a.m. We were told to arrive 15 minutes early to fill out > > paperwork. Since we don't actually live in Houston but > > rather Katy, this should have been about an hour commute for > > us. To play it safe we left the house at 7:00 a.m. > > Unfortunately it just happened to be one of those days where > > there was an accident on the HOV (high occupancy vehicle) > > lane which were taking. We were stuck there with the > > traffic being stalled for about 30 minutes. We called > > the Meyer Center at around 8:00 a.m. to tell them the > > situation. They told us that we had to arrive by 9:00 a.m. > > or the appointment would be considered cancelled. > > > > Somehow we got lucky and the traffic started moving > > again. We got to Texas Children's at around 8:40 a.m. The > > Meyer Center is up on the 16th floor but you need to change > > elevators on the 3rd floor if you're coming from the parking > > garage. We filled out the insurance paperwork and we didn't > > have to wait very long before being ushered into a room > > where the nurse proceeded to measure Zack's vital statistics. > > She recorded his weight as 32 lbs. This was my first > > inkling of things to come since he actually weighs close to > > 37 lbs. > > > > Anyway, shortly thereafter we met Dr. X. Anyone who > > desires her real name can send me an e-mail offline and I > > will tell you. Her card says M.D., Department of Pediatrics, > > Assistant Professor. I'm not sure what kind of special > > training a developmental pediatrician receives. Anyway, > > she basically began by asking me and my wife about our son. > > It seemed that a lot of the questions we were asked were > > already included in the voluminous paperwork that we had to > > fill out months before. She didn't seem to be familiar with > > most of the answers we had already provided in the > > paperwork. > > > > Of course, our son Zack is notorious for giving us a > > hard time when we take him to new places, especially indoors. > > But this time he actually calmed down and stopped crying > > after about ten minutes. We brought his favorite food with > > us which is dried mango and he began to happily munch it. > > So this was a major improvement in his behavior only Dr. X > > didn't see it that way. We had brought a couple of items > > from home in order to calm our son down. One of them was > > a metal attachment from a cake mixer, the part that actually > > stirs the cake mix. The other was a little plastic turtle > > which we bought as a floatable bath toy. > > > > Dr. X brought out an assortment of blocks, puzzles, > > etc. It was all made of wood except for a plastic cup and > > it looked pretty banged up and old. There were some round > > pegs that could be inserted into a board and some cutout > > puzzle shapes like a square, circle, etc. that could be > > inserted into a board with the same shapes. Needless to > > say, Zack was entirely unimpressed with any of her > > paraphernalia. He ignored it completely and proceeded to > > rotate the cake mixer blade back and forth on the table. > > After a few minutes she suggested that we take it away from > > him and hide it so he would concentrate on her stuff. Well, > > he got pretty upset and was looking for both the cake mixer > > blade and the plastic turtle all over the room. Even when > > he could not find them he still had no interest in any of > > her stuff. > > > > There was a PC in the room and a screen saver was > > running. Zack now shifted his attention to it and he > > started playing with the mouse. I asked Dr. X if she wanted > > us to show her what Zack could do with the computer. I'm > > sure I could have found some screen savers he was familiar > > with so he could select the one he wanted. Dr. X wasn't > > interested. As far as Dr. X was concerned if he wouldn't > > play with her wooden blocks then nothing else mattered. > > > > So this went on for about a half hour or so. I think > > we were all getting a little bored including Zack. So, cut > > to the chase: Dr. X's diagnosis was delivered to us which is > > the following: Moderate to Severe Autism, no talk of the > > spectrum here, this is full-blown autism we're talking about > > here. Zachary has the language capability of an 8-month old > > child. Somehow this translated into an IQ of around 20 > > (if you do the math, 8 months divided by 47 months times 100 > > is 17). He will always have an IQ of about the same. I > > suppose I should be happy for him since at the ripe old age > > of 100 he should be chasing young women like he's a 20-year > > old. > > > > Well, I must admit that actually hearing this said hit > > me like a direct blow to the solar plexus. Even though I > > had been expecting some sort of diagnosis on the spectrum, > > actually hearing it firsthand, particularly the part about > > the IQ of 20, was still shocking. I don't think there is > > anything that can prepare you for such a thing. Suddenly, > > my son's whole future flashed before my eyes - no graduation > > from high school, no college, no wedding, finally ending his > > days like Rain Man in some government funded mental > > institution after his parents have passed away. That all > > flashed through my mind. What a terrible feeling that is! > > > > Well, after this crushing news was delivered to us they > > sent in a Social Worker whom we shall refer to as Y. Her > > card says LMSW which I have no idea what that means. Miss > > Y gave us voluminous documentation on government programs, > > local support groups, etc., etc. concerned with autism. All > > of our specific questions about what types of therapy would > > be appropriate were never really answered definitively. > > > > I did ask Dr. X if she was familiar with the work of > > Dr. Mac's Communicating Partners. She said she had > > heard of him but I could tell she was pretty much clueless > > about his approach to late-talking children. I asked about > > ABA therapy and pretty much the only thing I was told is > > that it is very expensive and it doesn't focus on > > communication skills. > > > > Well, that's about it. Dr. X will write up her > > findings and send them to us within three days. We did do > > some blood work for some genetic screenings before we left. > > I guess they are going to look for Fragile X and other > > disorders. I don't know why they didn't do this two years > > ago when we had a lot of blood work done by the Genetics > > Department at Texas Children's Hospital, but they didn't. > > They are recommending an ABS (Auditory BrainStem) hearing > > test for Zack but it would require sedating him. They are > > also recommending a MRI brain scan which would also require > > sedation. We haven't decided if we want to put our son > > through the ordeal of sedation since it seems to involve > > some kind of fasting beforehand. > > > > So anyway, perhaps some folks will feel I am being a > > little unfair in my comments on Dr. X. But one undisputable > > contradiction in her evaluation versus the school district > > is this. My son had a FIE (Full and Independent Evaluation) > > back in March 2006 before he was admitted to PPCD. I looked > > it up and on page 2 it says the following: > > > > " Zachary's intellectual functioning appears to be > > within the average range. " > > > > How can his intellectual functioning be within the average > > range and his IQ be 20? Direct contradiction unless he > > has dropped 80 IQ points in the last 8 months. Also, I > > don't know too many 8-month old kids who can memorize the > > positions of all the songs on about 20+ CD's and who can > > navigate the Windows Explorer directory structure stopping > > at favorite directories and launching favorite applications. > > > > Therefore, in the spirit of the Rotten Tomatoes movie review > > web site, here is my rating of the Meyer Center: > > > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > > Freshness Rating: 10% > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 at the end of the 06/07school year cy fair scrambled to complete the evaluation for autism since suddenly they realized they goofed by not evaluating from the beginning. one of the " tests " submitted to me to fill in was for 5 -25 +/- year olds... since my son was 6 at the time he certainly fit the main requirement - fell into the age bracket. there were only a handful of questions that I could even answer out of i think i remember 300 or so questions most of which revolved around speech. - can your child ask for directions? he can't speak how can he ask for directions! - can your child ride his bike to the corner store by himself? he's only 6 for crying out loud- no child should ride their bike to the corner store by himself at the age of 6! besides, have you never seen the traffic on 1960 before! basically i told the diagnostician that i didn't appreciate their form of humor. i had enough to deal trying to teach my son potty training - i didn't need them telling 300 or so more things that he wasn't able to do. the test creators really need to consider the head trips they put on parents. Googahly@... wrote: Your experience sounds like our experience with them about 13 years ago. Although I don't recall them giving us an IQ. About six months later, Aldine school district gave my son an IQ of " below 20 " after admitting that they weren't able to actually perform the IQ test on him due to lack of cooperation. I wonder why these professionals feel the need to give an IQ if they can't actually test it? And to say that this will remain the child's IQ permanently is malpractice. Sad to think that Meyer is still considered a good place for developmental testing. My advice (which I'm sure you've already determined) is to chunk the report into a file and go seek help elsewhere. It makes for a good laugh years later when your child's IQ can actually be tested. My favorite " showed you " story is of a friend of mine's son who the testing doctor said would never walk, talk or see. About ten years later, he walked into the doctor's office, held up the report pointing to the part with the dire prognosis and said " you were wrong! " Gaylen ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 at the end of the 06/07school year cy fair scrambled to complete the evaluation for autism since suddenly they realized they goofed by not evaluating from the beginning. one of the " tests " submitted to me to fill in was for 5 -25 +/- year olds... since my son was 6 at the time he certainly fit the main requirement - fell into the age bracket. there were only a handful of questions that I could even answer out of i think i remember 300 or so questions most of which revolved around speech. - can your child ask for directions? he can't speak how can he ask for directions! - can your child ride his bike to the corner store by himself? he's only 6 for crying out loud- no child should ride their bike to the corner store by himself at the age of 6! besides, have you never seen the traffic on 1960 before! basically i told the diagnostician that i didn't appreciate their form of humor. i had enough to deal trying to teach my son potty training - i didn't need them telling 300 or so more things that he wasn't able to do. the test creators really need to consider the head trips they put on parents. Googahly@... wrote: Your experience sounds like our experience with them about 13 years ago. Although I don't recall them giving us an IQ. About six months later, Aldine school district gave my son an IQ of " below 20 " after admitting that they weren't able to actually perform the IQ test on him due to lack of cooperation. I wonder why these professionals feel the need to give an IQ if they can't actually test it? And to say that this will remain the child's IQ permanently is malpractice. Sad to think that Meyer is still considered a good place for developmental testing. My advice (which I'm sure you've already determined) is to chunk the report into a file and go seek help elsewhere. It makes for a good laugh years later when your child's IQ can actually be tested. My favorite " showed you " story is of a friend of mine's son who the testing doctor said would never walk, talk or see. About ten years later, he walked into the doctor's office, held up the report pointing to the part with the dire prognosis and said " you were wrong! " Gaylen ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Hi All these awful experiences with evaluations have me worried. My son has an evaluation scheduled with Dr, Genecov at the Medical City, Dallas in March. Have any of you had first-hand or heard experiences with her. Regards Sreedevi Re: Meyer Center Trip Report That is almost identical to our experience at the University of Washington Autism Center in Seattle. The thing with the boring blocks and pegs and such is part of a specific evaluation test called the " ADOS. " Clearly, whoever designed the ADOS wanted to pick toys that almost no children would be remotely interested in, especially autistic children. They are trying to see if the child will use the boring toys in pretend play (e.g. build a house with the blocks) and/or if they will ask their parents for help or simply grab their hands and use them as a tool to help them (my son did the latter). As far as the IQ part, that is ridiculous that the doctor tried to identify your son's IQ through that test. It is not designed to measure IQ. The only test that I have heard of that is acceptable to measure IQ for autistic children is the C-TONI, which I don't think can even be administered until the child is 6 or 7. It measures IQ via " nonverbal intelligence, " whatever that means. In general, most people I talk to never get a very good prognosis nor very good advice from the centers their children get diagnosed through. Certainly they will never tell you that there are ways your child can improve and get significantly better, such as ABA or biomedical treatments. What was most helpful for our family was to find like-minded people in our area through a support group that pointed us in the direction of getting treatment to help our son. The only thing I've ever used the diagnostic papers from the UW Autism Center for are cutting lines at the airport and at amusement parks - you can get " special treatment " if your child has a disability. - Jimmy 10/12/2001 > > Hi, I'm new to the group. I thought I would share a little true > story with y'all. > > The Meyer Center (part of Texas Children's Hospital) is supposed to > be the premier developmental pediatrics center in Houston and > perhaps Texas. Nevertheless, we had a very bad experience down > there last November. I thought I would share some of our > experiences visiting the Meyer Center so here is my trip report. > BTW, Dr. X is Dr. Nirupama Madduri. > > --- Tom Marking > > ************ ********* ********* ********* ********* ********* ********* *** > ** > > Meyer Center Trip Report > Thursday, November 9, 2006 > > ************ ********* ********* ********* ********* ********* *** > > Name: Meyer Center for Developmental Pediatrics > Affiliation: Texas Children's Hospital > Address: Clinical Care Center, 16th Floor > 6701 Fannin St. > Houston, Texas 77030 > Phone: > (appointments) > Web Site: http://www.texaschi ldrenshospital. org/ > carecenters/ DevelopmentPedia trics/Default. aspx > > Patient: Zachary > Age: 3 years, 11 months > > The Meyer Center at Texas Children's Hospital performs > a variety of diagnostic and evaluation services in the area > of developmental pediatrics. We first received a referral > to the Meyer Center from our pediatrician back in May 2006 > which would be 6 months ago. We received paperwork from > the Meyer Center sometime in the June to July time period. > An initial appointment was scheduled for February 2007 which > was the earliest available. This would have been 9 months > after the initial referral. > > Due to cancellations we were able to move up our > schedule although up until the last week we thought our > appointment was going to be on November 22. Anyway, last > week Texas Children's Hospital called and informed us that > the doctor (which we shall refer to here as Doctor X) would > not be available on the scheduled date and we would have to > move the appointment up to November 9. Despite numerous > attempts to get them to return my calls at my work number > they kept on calling my wife at our home number. > > Anyway, today we had an appointment from 8:30 to 10:30 > a.m. We were told to arrive 15 minutes early to fill out > paperwork. Since we don't actually live in Houston but > rather Katy, this should have been about an hour commute for > us. To play it safe we left the house at 7:00 a.m. > Unfortunately it just happened to be one of those days where > there was an accident on the HOV (high occupancy vehicle) > lane which were taking. We were stuck there with the > traffic being stalled for about 30 minutes. We called > the Meyer Center at around 8:00 a.m. to tell them the > situation. They told us that we had to arrive by 9:00 a.m. > or the appointment would be considered cancelled. > > Somehow we got lucky and the traffic started moving > again. We got to Texas Children's at around 8:40 a.m. The > Meyer Center is up on the 16th floor but you need to change > elevators on the 3rd floor if you're coming from the parking > garage. We filled out the insurance paperwork and we didn't > have to wait very long before being ushered into a room > where the nurse proceeded to measure Zack's vital statistics. > She recorded his weight as 32 lbs. This was my first > inkling of things to come since he actually weighs close to > 37 lbs. > > Anyway, shortly thereafter we met Dr. X. Anyone who > desires her real name can send me an e-mail offline and I > will tell you. Her card says M.D., Department of Pediatrics, > Assistant Professor. I'm not sure what kind of special > training a developmental pediatrician receives. Anyway, > she basically began by asking me and my wife about our son. > It seemed that a lot of the questions we were asked were > already included in the voluminous paperwork that we had to > fill out months before. She didn't seem to be familiar with > most of the answers we had already provided in the > paperwork. > > Of course, our son Zack is notorious for giving us a > hard time when we take him to new places, especially indoors. > But this time he actually calmed down and stopped crying > after about ten minutes. We brought his favorite food with > us which is dried mango and he began to happily munch it. > So this was a major improvement in his behavior only Dr. X > didn't see it that way. We had brought a couple of items > from home in order to calm our son down. One of them was > a metal attachment from a cake mixer, the part that actually > stirs the cake mix. The other was a little plastic turtle > which we bought as a floatable bath toy. > > Dr. X brought out an assortment of blocks, puzzles, > etc. It was all made of wood except for a plastic cup and > it looked pretty banged up and old. There were some round > pegs that could be inserted into a board and some cutout > puzzle shapes like a square, circle, etc. that could be > inserted into a board with the same shapes. Needless to > say, Zack was entirely unimpressed with any of her > paraphernalia. He ignored it completely and proceeded to > rotate the cake mixer blade back and forth on the table. > After a few minutes she suggested that we take it away from > him and hide it so he would concentrate on her stuff. Well, > he got pretty upset and was looking for both the cake mixer > blade and the plastic turtle all over the room. Even when > he could not find them he still had no interest in any of > her stuff. > > There was a PC in the room and a screen saver was > running. Zack now shifted his attention to it and he > started playing with the mouse. I asked Dr. X if she wanted > us to show her what Zack could do with the computer. I'm > sure I could have found some screen savers he was familiar > with so he could select the one he wanted. Dr. X wasn't > interested. As far as Dr. X was concerned if he wouldn't > play with her wooden blocks then nothing else mattered. > > So this went on for about a half hour or so. I think > we were all getting a little bored including Zack. So, cut > to the chase: Dr. X's diagnosis was delivered to us which is > the following: Moderate to Severe Autism, no talk of the > spectrum here, this is full-blown autism we're talking about > here. Zachary has the language capability of an 8-month old > child. Somehow this translated into an IQ of around 20 > (if you do the math, 8 months divided by 47 months times 100 > is 17). He will always have an IQ of about the same. I > suppose I should be happy for him since at the ripe old age > of 100 he should be chasing young women like he's a 20-year > old. > > Well, I must admit that actually hearing this said hit > me like a direct blow to the solar plexus. Even though I > had been expecting some sort of diagnosis on the spectrum, > actually hearing it firsthand, particularly the part about > the IQ of 20, was still shocking. I don't think there is > anything that can prepare you for such a thing. Suddenly, > my son's whole future flashed before my eyes - no graduation > from high school, no college, no wedding, finally ending his > days like Rain Man in some government funded mental > institution after his parents have passed away. That all > flashed through my mind. What a terrible feeling that is! > > Well, after this crushing news was delivered to us they > sent in a Social Worker whom we shall refer to as Y. Her > card says LMSW which I have no idea what that means. Miss > Y gave us voluminous documentation on government programs, > local support groups, etc., etc. concerned with autism. All > of our specific questions about what types of therapy would > be appropriate were never really answered definitively. > > I did ask Dr. X if she was familiar with the work of > Dr. Mac's Communicating Partners. She said she had > heard of him but I could tell she was pretty much clueless > about his approach to late-talking children. I asked about > ABA therapy and pretty much the only thing I was told is > that it is very expensive and it doesn't focus on > communication skills. > > Well, that's about it. Dr. X will write up her > findings and send them to us within three days. We did do > some blood work for some genetic screenings before we left. > I guess they are going to look for Fragile X and other > disorders. I don't know why they didn't do this two years > ago when we had a lot of blood work done by the Genetics > Department at Texas Children's Hospital, but they didn't. > They are recommending an ABS (Auditory BrainStem) hearing > test for Zack but it would require sedating him. They are > also recommending a MRI brain scan which would also require > sedation. We haven't decided if we want to put our son > through the ordeal of sedation since it seems to involve > some kind of fasting beforehand. > > So anyway, perhaps some folks will feel I am being a > little unfair in my comments on Dr. X. But one undisputable > contradiction in her evaluation versus the school district > is this. My son had a FIE (Full and Independent Evaluation) > back in March 2006 before he was admitted to PPCD. I looked > it up and on page 2 it says the following: > > " Zachary's intellectual functioning appears to be > within the average range. " > > How can his intellectual functioning be within the average > range and his IQ be 20? Direct contradiction unless he > has dropped 80 IQ points in the last 8 months. Also, I > don't know too many 8-month old kids who can memorize the > positions of all the songs on about 20+ CD's and who can > navigate the Windows Explorer directory structure stopping > at favorite directories and launching favorite applications. > > Therefore, in the spirit of the Rotten Tomatoes movie review > web site, here is my rating of the Meyer Center: > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > Freshness Rating: 10% > ________________________________________________________________________________\ ____ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. http://tv.yahoo.com/collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Hi All these awful experiences with evaluations have me worried. My son has an evaluation scheduled with Dr, Genecov at the Medical City, Dallas in March. Have any of you had first-hand or heard experiences with her. Regards Sreedevi Re: Meyer Center Trip Report That is almost identical to our experience at the University of Washington Autism Center in Seattle. The thing with the boring blocks and pegs and such is part of a specific evaluation test called the " ADOS. " Clearly, whoever designed the ADOS wanted to pick toys that almost no children would be remotely interested in, especially autistic children. They are trying to see if the child will use the boring toys in pretend play (e.g. build a house with the blocks) and/or if they will ask their parents for help or simply grab their hands and use them as a tool to help them (my son did the latter). As far as the IQ part, that is ridiculous that the doctor tried to identify your son's IQ through that test. It is not designed to measure IQ. The only test that I have heard of that is acceptable to measure IQ for autistic children is the C-TONI, which I don't think can even be administered until the child is 6 or 7. It measures IQ via " nonverbal intelligence, " whatever that means. In general, most people I talk to never get a very good prognosis nor very good advice from the centers their children get diagnosed through. Certainly they will never tell you that there are ways your child can improve and get significantly better, such as ABA or biomedical treatments. What was most helpful for our family was to find like-minded people in our area through a support group that pointed us in the direction of getting treatment to help our son. The only thing I've ever used the diagnostic papers from the UW Autism Center for are cutting lines at the airport and at amusement parks - you can get " special treatment " if your child has a disability. - Jimmy 10/12/2001 > > Hi, I'm new to the group. I thought I would share a little true > story with y'all. > > The Meyer Center (part of Texas Children's Hospital) is supposed to > be the premier developmental pediatrics center in Houston and > perhaps Texas. Nevertheless, we had a very bad experience down > there last November. I thought I would share some of our > experiences visiting the Meyer Center so here is my trip report. > BTW, Dr. X is Dr. Nirupama Madduri. > > --- Tom Marking > > ************ ********* ********* ********* ********* ********* ********* *** > ** > > Meyer Center Trip Report > Thursday, November 9, 2006 > > ************ ********* ********* ********* ********* ********* *** > > Name: Meyer Center for Developmental Pediatrics > Affiliation: Texas Children's Hospital > Address: Clinical Care Center, 16th Floor > 6701 Fannin St. > Houston, Texas 77030 > Phone: > (appointments) > Web Site: http://www.texaschi ldrenshospital. org/ > carecenters/ DevelopmentPedia trics/Default. aspx > > Patient: Zachary > Age: 3 years, 11 months > > The Meyer Center at Texas Children's Hospital performs > a variety of diagnostic and evaluation services in the area > of developmental pediatrics. We first received a referral > to the Meyer Center from our pediatrician back in May 2006 > which would be 6 months ago. We received paperwork from > the Meyer Center sometime in the June to July time period. > An initial appointment was scheduled for February 2007 which > was the earliest available. This would have been 9 months > after the initial referral. > > Due to cancellations we were able to move up our > schedule although up until the last week we thought our > appointment was going to be on November 22. Anyway, last > week Texas Children's Hospital called and informed us that > the doctor (which we shall refer to here as Doctor X) would > not be available on the scheduled date and we would have to > move the appointment up to November 9. Despite numerous > attempts to get them to return my calls at my work number > they kept on calling my wife at our home number. > > Anyway, today we had an appointment from 8:30 to 10:30 > a.m. We were told to arrive 15 minutes early to fill out > paperwork. Since we don't actually live in Houston but > rather Katy, this should have been about an hour commute for > us. To play it safe we left the house at 7:00 a.m. > Unfortunately it just happened to be one of those days where > there was an accident on the HOV (high occupancy vehicle) > lane which were taking. We were stuck there with the > traffic being stalled for about 30 minutes. We called > the Meyer Center at around 8:00 a.m. to tell them the > situation. They told us that we had to arrive by 9:00 a.m. > or the appointment would be considered cancelled. > > Somehow we got lucky and the traffic started moving > again. We got to Texas Children's at around 8:40 a.m. The > Meyer Center is up on the 16th floor but you need to change > elevators on the 3rd floor if you're coming from the parking > garage. We filled out the insurance paperwork and we didn't > have to wait very long before being ushered into a room > where the nurse proceeded to measure Zack's vital statistics. > She recorded his weight as 32 lbs. This was my first > inkling of things to come since he actually weighs close to > 37 lbs. > > Anyway, shortly thereafter we met Dr. X. Anyone who > desires her real name can send me an e-mail offline and I > will tell you. Her card says M.D., Department of Pediatrics, > Assistant Professor. I'm not sure what kind of special > training a developmental pediatrician receives. Anyway, > she basically began by asking me and my wife about our son. > It seemed that a lot of the questions we were asked were > already included in the voluminous paperwork that we had to > fill out months before. She didn't seem to be familiar with > most of the answers we had already provided in the > paperwork. > > Of course, our son Zack is notorious for giving us a > hard time when we take him to new places, especially indoors. > But this time he actually calmed down and stopped crying > after about ten minutes. We brought his favorite food with > us which is dried mango and he began to happily munch it. > So this was a major improvement in his behavior only Dr. X > didn't see it that way. We had brought a couple of items > from home in order to calm our son down. One of them was > a metal attachment from a cake mixer, the part that actually > stirs the cake mix. The other was a little plastic turtle > which we bought as a floatable bath toy. > > Dr. X brought out an assortment of blocks, puzzles, > etc. It was all made of wood except for a plastic cup and > it looked pretty banged up and old. There were some round > pegs that could be inserted into a board and some cutout > puzzle shapes like a square, circle, etc. that could be > inserted into a board with the same shapes. Needless to > say, Zack was entirely unimpressed with any of her > paraphernalia. He ignored it completely and proceeded to > rotate the cake mixer blade back and forth on the table. > After a few minutes she suggested that we take it away from > him and hide it so he would concentrate on her stuff. Well, > he got pretty upset and was looking for both the cake mixer > blade and the plastic turtle all over the room. Even when > he could not find them he still had no interest in any of > her stuff. > > There was a PC in the room and a screen saver was > running. Zack now shifted his attention to it and he > started playing with the mouse. I asked Dr. X if she wanted > us to show her what Zack could do with the computer. I'm > sure I could have found some screen savers he was familiar > with so he could select the one he wanted. Dr. X wasn't > interested. As far as Dr. X was concerned if he wouldn't > play with her wooden blocks then nothing else mattered. > > So this went on for about a half hour or so. I think > we were all getting a little bored including Zack. So, cut > to the chase: Dr. X's diagnosis was delivered to us which is > the following: Moderate to Severe Autism, no talk of the > spectrum here, this is full-blown autism we're talking about > here. Zachary has the language capability of an 8-month old > child. Somehow this translated into an IQ of around 20 > (if you do the math, 8 months divided by 47 months times 100 > is 17). He will always have an IQ of about the same. I > suppose I should be happy for him since at the ripe old age > of 100 he should be chasing young women like he's a 20-year > old. > > Well, I must admit that actually hearing this said hit > me like a direct blow to the solar plexus. Even though I > had been expecting some sort of diagnosis on the spectrum, > actually hearing it firsthand, particularly the part about > the IQ of 20, was still shocking. I don't think there is > anything that can prepare you for such a thing. Suddenly, > my son's whole future flashed before my eyes - no graduation > from high school, no college, no wedding, finally ending his > days like Rain Man in some government funded mental > institution after his parents have passed away. That all > flashed through my mind. What a terrible feeling that is! > > Well, after this crushing news was delivered to us they > sent in a Social Worker whom we shall refer to as Y. Her > card says LMSW which I have no idea what that means. Miss > Y gave us voluminous documentation on government programs, > local support groups, etc., etc. concerned with autism. All > of our specific questions about what types of therapy would > be appropriate were never really answered definitively. > > I did ask Dr. X if she was familiar with the work of > Dr. Mac's Communicating Partners. She said she had > heard of him but I could tell she was pretty much clueless > about his approach to late-talking children. I asked about > ABA therapy and pretty much the only thing I was told is > that it is very expensive and it doesn't focus on > communication skills. > > Well, that's about it. Dr. X will write up her > findings and send them to us within three days. We did do > some blood work for some genetic screenings before we left. > I guess they are going to look for Fragile X and other > disorders. I don't know why they didn't do this two years > ago when we had a lot of blood work done by the Genetics > Department at Texas Children's Hospital, but they didn't. > They are recommending an ABS (Auditory BrainStem) hearing > test for Zack but it would require sedating him. They are > also recommending a MRI brain scan which would also require > sedation. We haven't decided if we want to put our son > through the ordeal of sedation since it seems to involve > some kind of fasting beforehand. > > So anyway, perhaps some folks will feel I am being a > little unfair in my comments on Dr. X. But one undisputable > contradiction in her evaluation versus the school district > is this. My son had a FIE (Full and Independent Evaluation) > back in March 2006 before he was admitted to PPCD. I looked > it up and on page 2 it says the following: > > " Zachary's intellectual functioning appears to be > within the average range. " > > How can his intellectual functioning be within the average > range and his IQ be 20? Direct contradiction unless he > has dropped 80 IQ points in the last 8 months. Also, I > don't know too many 8-month old kids who can memorize the > positions of all the songs on about 20+ CD's and who can > navigate the Windows Explorer directory structure stopping > at favorite directories and launching favorite applications. > > Therefore, in the spirit of the Rotten Tomatoes movie review > web site, here is my rating of the Meyer Center: > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > Freshness Rating: 10% > ________________________________________________________________________________\ ____ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. http://tv.yahoo.com/collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Hi All these awful experiences with evaluations have me worried. My son has an evaluation scheduled with Dr, Genecov at the Medical City, Dallas in March. Have any of you had first-hand or heard experiences with her. Regards Sreedevi Re: Meyer Center Trip Report That is almost identical to our experience at the University of Washington Autism Center in Seattle. The thing with the boring blocks and pegs and such is part of a specific evaluation test called the " ADOS. " Clearly, whoever designed the ADOS wanted to pick toys that almost no children would be remotely interested in, especially autistic children. They are trying to see if the child will use the boring toys in pretend play (e.g. build a house with the blocks) and/or if they will ask their parents for help or simply grab their hands and use them as a tool to help them (my son did the latter). As far as the IQ part, that is ridiculous that the doctor tried to identify your son's IQ through that test. It is not designed to measure IQ. The only test that I have heard of that is acceptable to measure IQ for autistic children is the C-TONI, which I don't think can even be administered until the child is 6 or 7. It measures IQ via " nonverbal intelligence, " whatever that means. In general, most people I talk to never get a very good prognosis nor very good advice from the centers their children get diagnosed through. Certainly they will never tell you that there are ways your child can improve and get significantly better, such as ABA or biomedical treatments. What was most helpful for our family was to find like-minded people in our area through a support group that pointed us in the direction of getting treatment to help our son. The only thing I've ever used the diagnostic papers from the UW Autism Center for are cutting lines at the airport and at amusement parks - you can get " special treatment " if your child has a disability. - Jimmy 10/12/2001 > > Hi, I'm new to the group. I thought I would share a little true > story with y'all. > > The Meyer Center (part of Texas Children's Hospital) is supposed to > be the premier developmental pediatrics center in Houston and > perhaps Texas. Nevertheless, we had a very bad experience down > there last November. I thought I would share some of our > experiences visiting the Meyer Center so here is my trip report. > BTW, Dr. X is Dr. Nirupama Madduri. > > --- Tom Marking > > ************ ********* ********* ********* ********* ********* ********* *** > ** > > Meyer Center Trip Report > Thursday, November 9, 2006 > > ************ ********* ********* ********* ********* ********* *** > > Name: Meyer Center for Developmental Pediatrics > Affiliation: Texas Children's Hospital > Address: Clinical Care Center, 16th Floor > 6701 Fannin St. > Houston, Texas 77030 > Phone: > (appointments) > Web Site: http://www.texaschi ldrenshospital. org/ > carecenters/ DevelopmentPedia trics/Default. aspx > > Patient: Zachary > Age: 3 years, 11 months > > The Meyer Center at Texas Children's Hospital performs > a variety of diagnostic and evaluation services in the area > of developmental pediatrics. We first received a referral > to the Meyer Center from our pediatrician back in May 2006 > which would be 6 months ago. We received paperwork from > the Meyer Center sometime in the June to July time period. > An initial appointment was scheduled for February 2007 which > was the earliest available. This would have been 9 months > after the initial referral. > > Due to cancellations we were able to move up our > schedule although up until the last week we thought our > appointment was going to be on November 22. Anyway, last > week Texas Children's Hospital called and informed us that > the doctor (which we shall refer to here as Doctor X) would > not be available on the scheduled date and we would have to > move the appointment up to November 9. Despite numerous > attempts to get them to return my calls at my work number > they kept on calling my wife at our home number. > > Anyway, today we had an appointment from 8:30 to 10:30 > a.m. We were told to arrive 15 minutes early to fill out > paperwork. Since we don't actually live in Houston but > rather Katy, this should have been about an hour commute for > us. To play it safe we left the house at 7:00 a.m. > Unfortunately it just happened to be one of those days where > there was an accident on the HOV (high occupancy vehicle) > lane which were taking. We were stuck there with the > traffic being stalled for about 30 minutes. We called > the Meyer Center at around 8:00 a.m. to tell them the > situation. They told us that we had to arrive by 9:00 a.m. > or the appointment would be considered cancelled. > > Somehow we got lucky and the traffic started moving > again. We got to Texas Children's at around 8:40 a.m. The > Meyer Center is up on the 16th floor but you need to change > elevators on the 3rd floor if you're coming from the parking > garage. We filled out the insurance paperwork and we didn't > have to wait very long before being ushered into a room > where the nurse proceeded to measure Zack's vital statistics. > She recorded his weight as 32 lbs. This was my first > inkling of things to come since he actually weighs close to > 37 lbs. > > Anyway, shortly thereafter we met Dr. X. Anyone who > desires her real name can send me an e-mail offline and I > will tell you. Her card says M.D., Department of Pediatrics, > Assistant Professor. I'm not sure what kind of special > training a developmental pediatrician receives. Anyway, > she basically began by asking me and my wife about our son. > It seemed that a lot of the questions we were asked were > already included in the voluminous paperwork that we had to > fill out months before. She didn't seem to be familiar with > most of the answers we had already provided in the > paperwork. > > Of course, our son Zack is notorious for giving us a > hard time when we take him to new places, especially indoors. > But this time he actually calmed down and stopped crying > after about ten minutes. We brought his favorite food with > us which is dried mango and he began to happily munch it. > So this was a major improvement in his behavior only Dr. X > didn't see it that way. We had brought a couple of items > from home in order to calm our son down. One of them was > a metal attachment from a cake mixer, the part that actually > stirs the cake mix. The other was a little plastic turtle > which we bought as a floatable bath toy. > > Dr. X brought out an assortment of blocks, puzzles, > etc. It was all made of wood except for a plastic cup and > it looked pretty banged up and old. There were some round > pegs that could be inserted into a board and some cutout > puzzle shapes like a square, circle, etc. that could be > inserted into a board with the same shapes. Needless to > say, Zack was entirely unimpressed with any of her > paraphernalia. He ignored it completely and proceeded to > rotate the cake mixer blade back and forth on the table. > After a few minutes she suggested that we take it away from > him and hide it so he would concentrate on her stuff. Well, > he got pretty upset and was looking for both the cake mixer > blade and the plastic turtle all over the room. Even when > he could not find them he still had no interest in any of > her stuff. > > There was a PC in the room and a screen saver was > running. Zack now shifted his attention to it and he > started playing with the mouse. I asked Dr. X if she wanted > us to show her what Zack could do with the computer. I'm > sure I could have found some screen savers he was familiar > with so he could select the one he wanted. Dr. X wasn't > interested. As far as Dr. X was concerned if he wouldn't > play with her wooden blocks then nothing else mattered. > > So this went on for about a half hour or so. I think > we were all getting a little bored including Zack. So, cut > to the chase: Dr. X's diagnosis was delivered to us which is > the following: Moderate to Severe Autism, no talk of the > spectrum here, this is full-blown autism we're talking about > here. Zachary has the language capability of an 8-month old > child. Somehow this translated into an IQ of around 20 > (if you do the math, 8 months divided by 47 months times 100 > is 17). He will always have an IQ of about the same. I > suppose I should be happy for him since at the ripe old age > of 100 he should be chasing young women like he's a 20-year > old. > > Well, I must admit that actually hearing this said hit > me like a direct blow to the solar plexus. Even though I > had been expecting some sort of diagnosis on the spectrum, > actually hearing it firsthand, particularly the part about > the IQ of 20, was still shocking. I don't think there is > anything that can prepare you for such a thing. Suddenly, > my son's whole future flashed before my eyes - no graduation > from high school, no college, no wedding, finally ending his > days like Rain Man in some government funded mental > institution after his parents have passed away. That all > flashed through my mind. What a terrible feeling that is! > > Well, after this crushing news was delivered to us they > sent in a Social Worker whom we shall refer to as Y. Her > card says LMSW which I have no idea what that means. Miss > Y gave us voluminous documentation on government programs, > local support groups, etc., etc. concerned with autism. All > of our specific questions about what types of therapy would > be appropriate were never really answered definitively. > > I did ask Dr. X if she was familiar with the work of > Dr. Mac's Communicating Partners. She said she had > heard of him but I could tell she was pretty much clueless > about his approach to late-talking children. I asked about > ABA therapy and pretty much the only thing I was told is > that it is very expensive and it doesn't focus on > communication skills. > > Well, that's about it. Dr. X will write up her > findings and send them to us within three days. We did do > some blood work for some genetic screenings before we left. > I guess they are going to look for Fragile X and other > disorders. I don't know why they didn't do this two years > ago when we had a lot of blood work done by the Genetics > Department at Texas Children's Hospital, but they didn't. > They are recommending an ABS (Auditory BrainStem) hearing > test for Zack but it would require sedating him. They are > also recommending a MRI brain scan which would also require > sedation. We haven't decided if we want to put our son > through the ordeal of sedation since it seems to involve > some kind of fasting beforehand. > > So anyway, perhaps some folks will feel I am being a > little unfair in my comments on Dr. X. But one undisputable > contradiction in her evaluation versus the school district > is this. My son had a FIE (Full and Independent Evaluation) > back in March 2006 before he was admitted to PPCD. I looked > it up and on page 2 it says the following: > > " Zachary's intellectual functioning appears to be > within the average range. " > > How can his intellectual functioning be within the average > range and his IQ be 20? Direct contradiction unless he > has dropped 80 IQ points in the last 8 months. Also, I > don't know too many 8-month old kids who can memorize the > positions of all the songs on about 20+ CD's and who can > navigate the Windows Explorer directory structure stopping > at favorite directories and launching favorite applications. > > Therefore, in the spirit of the Rotten Tomatoes movie review > web site, here is my rating of the Meyer Center: > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > Freshness Rating: 10% > ________________________________________________________________________________\ ____ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. http://tv.yahoo.com/collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 We too had a bad experience with the Meyers Center and specifically Dr. Vinson. Everyone we dealt with for a series of months that it took to get through their clinics was excited I had brothers being diagnosed at the same time and talked around me as if I wasn't there. I requested a great deal more lab testing than they would have because we were already investigating biomed treatments at that point. It was very frustrating, drawn-out, expensive and did not help us with any practical ideas on what to do. They (Texas Children's) kept directing us to the Bridges program which at that time (Fall 2004) was in bad shape. Re: Meyer Center Trip Report We also had a horrible experience at Meyer Center. In our case, it was with Dr. Vinson (chief of staff). Our ordeal lasted for 3 years with them. > > Hi, I'm new to the group. I thought I would share a little true > story with y'all. > > The Meyer Center (part of Texas Children's Hospital) is supposed to > be the premier developmental pediatrics center in Houston and > perhaps Texas. Nevertheless, we had a very bad experience down > there last November. I thought I would share some of our > experiences visiting the Meyer Center so here is my trip report. > BTW, Dr. X is Dr. Nirupama Madduri. > > --- Tom Marking > > ********************************************************************* > ** > > Meyer Center Trip Report > Thursday, November 9, 2006 > > ************************************************************ > > Name: Meyer Center for Developmental Pediatrics > Affiliation: Texas Children's Hospital > Address: Clinical Care Center, 16th Floor > 6701 Fannin St. > Houston, Texas 77030 > Phone: > (appointments) > Web Site: http://www.texaschildrenshospital.org/ > carecenters/DevelopmentPediatrics/Default.aspx > > Patient: Zachary > Age: 3 years, 11 months > > The Meyer Center at Texas Children's Hospital performs > a variety of diagnostic and evaluation services in the area > of developmental pediatrics. We first received a referral > to the Meyer Center from our pediatrician back in May 2006 > which would be 6 months ago. We received paperwork from > the Meyer Center sometime in the June to July time period. > An initial appointment was scheduled for February 2007 which > was the earliest available. This would have been 9 months > after the initial referral. > > Due to cancellations we were able to move up our > schedule although up until the last week we thought our > appointment was going to be on November 22. Anyway, last > week Texas Children's Hospital called and informed us that > the doctor (which we shall refer to here as Doctor X) would > not be available on the scheduled date and we would have to > move the appointment up to November 9. Despite numerous > attempts to get them to return my calls at my work number > they kept on calling my wife at our home number. > > Anyway, today we had an appointment from 8:30 to 10:30 > a.m. We were told to arrive 15 minutes early to fill out > paperwork. Since we don't actually live in Houston but > rather Katy, this should have been about an hour commute for > us. To play it safe we left the house at 7:00 a.m. > Unfortunately it just happened to be one of those days where > there was an accident on the HOV (high occupancy vehicle) > lane which were taking. We were stuck there with the > traffic being stalled for about 30 minutes. We called > the Meyer Center at around 8:00 a.m. to tell them the > situation. They told us that we had to arrive by 9:00 a.m. > or the appointment would be considered cancelled. > > Somehow we got lucky and the traffic started moving > again. We got to Texas Children's at around 8:40 a.m. The > Meyer Center is up on the 16th floor but you need to change > elevators on the 3rd floor if you're coming from the parking > garage. We filled out the insurance paperwork and we didn't > have to wait very long before being ushered into a room > where the nurse proceeded to measure Zack's vital statistics. > She recorded his weight as 32 lbs. This was my first > inkling of things to come since he actually weighs close to > 37 lbs. > > Anyway, shortly thereafter we met Dr. X. Anyone who > desires her real name can send me an e-mail offline and I > will tell you. Her card says M.D., Department of Pediatrics, > Assistant Professor. I'm not sure what kind of special > training a developmental pediatrician receives. Anyway, > she basically began by asking me and my wife about our son. > It seemed that a lot of the questions we were asked were > already included in the voluminous paperwork that we had to > fill out months before. She didn't seem to be familiar with > most of the answers we had already provided in the > paperwork. > > Of course, our son Zack is notorious for giving us a > hard time when we take him to new places, especially indoors. > But this time he actually calmed down and stopped crying > after about ten minutes. We brought his favorite food with > us which is dried mango and he began to happily munch it. > So this was a major improvement in his behavior only Dr. X > didn't see it that way. We had brought a couple of items > from home in order to calm our son down. One of them was > a metal attachment from a cake mixer, the part that actually > stirs the cake mix. The other was a little plastic turtle > which we bought as a floatable bath toy. > > Dr. X brought out an assortment of blocks, puzzles, > etc. It was all made of wood except for a plastic cup and > it looked pretty banged up and old. There were some round > pegs that could be inserted into a board and some cutout > puzzle shapes like a square, circle, etc. that could be > inserted into a board with the same shapes. Needless to > say, Zack was entirely unimpressed with any of her > paraphernalia. He ignored it completely and proceeded to > rotate the cake mixer blade back and forth on the table. > After a few minutes she suggested that we take it away from > him and hide it so he would concentrate on her stuff. Well, > he got pretty upset and was looking for both the cake mixer > blade and the plastic turtle all over the room. Even when > he could not find them he still had no interest in any of > her stuff. > > There was a PC in the room and a screen saver was > running. Zack now shifted his attention to it and he > started playing with the mouse. I asked Dr. X if she wanted > us to show her what Zack could do with the computer. I'm > sure I could have found some screen savers he was familiar > with so he could select the one he wanted. Dr. X wasn't > interested. As far as Dr. X was concerned if he wouldn't > play with her wooden blocks then nothing else mattered. > > So this went on for about a half hour or so. I think > we were all getting a little bored including Zack. So, cut > to the chase: Dr. X's diagnosis was delivered to us which is > the following: Moderate to Severe Autism, no talk of the > spectrum here, this is full-blown autism we're talking about > here. Zachary has the language capability of an 8-month old > child. Somehow this translated into an IQ of around 20 > (if you do the math, 8 months divided by 47 months times 100 > is 17). He will always have an IQ of about the same. I > suppose I should be happy for him since at the ripe old age > of 100 he should be chasing young women like he's a 20-year > old. > > Well, I must admit that actually hearing this said hit > me like a direct blow to the solar plexus. Even though I > had been expecting some sort of diagnosis on the spectrum, > actually hearing it firsthand, particularly the part about > the IQ of 20, was still shocking. I don't think there is > anything that can prepare you for such a thing. Suddenly, > my son's whole future flashed before my eyes - no graduation > from high school, no college, no wedding, finally ending his > days like Rain Man in some government funded mental > institution after his parents have passed away. That all > flashed through my mind. What a terrible feeling that is! > > Well, after this crushing news was delivered to us they > sent in a Social Worker whom we shall refer to as Y. Her > card says LMSW which I have no idea what that means. Miss > Y gave us voluminous documentation on government programs, > local support groups, etc., etc. concerned with autism. All > of our specific questions about what types of therapy would > be appropriate were never really answered definitively. > > I did ask Dr. X if she was familiar with the work of > Dr. Mac's Communicating Partners. She said she had > heard of him but I could tell she was pretty much clueless > about his approach to late-talking children. I asked about > ABA therapy and pretty much the only thing I was told is > that it is very expensive and it doesn't focus on > communication skills. > > Well, that's about it. Dr. X will write up her > findings and send them to us within three days. We did do > some blood work for some genetic screenings before we left. > I guess they are going to look for Fragile X and other > disorders. I don't know why they didn't do this two years > ago when we had a lot of blood work done by the Genetics > Department at Texas Children's Hospital, but they didn't. > They are recommending an ABS (Auditory BrainStem) hearing > test for Zack but it would require sedating him. They are > also recommending a MRI brain scan which would also require > sedation. We haven't decided if we want to put our son > through the ordeal of sedation since it seems to involve > some kind of fasting beforehand. > > So anyway, perhaps some folks will feel I am being a > little unfair in my comments on Dr. X. But one undisputable > contradiction in her evaluation versus the school district > is this. My son had a FIE (Full and Independent Evaluation) > back in March 2006 before he was admitted to PPCD. I looked > it up and on page 2 it says the following: > > " Zachary's intellectual functioning appears to be > within the average range. " > > How can his intellectual functioning be within the average > range and his IQ be 20? Direct contradiction unless he > has dropped 80 IQ points in the last 8 months. Also, I > don't know too many 8-month old kids who can memorize the > positions of all the songs on about 20+ CD's and who can > navigate the Windows Explorer directory structure stopping > at favorite directories and launching favorite applications. > > Therefore, in the spirit of the Rotten Tomatoes movie review > web site, here is my rating of the Meyer Center: > > MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > Freshness Rating: 10% > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 We also see Dr. M at the Meyer Center. We don't agree with everything she says but we found her very helpful. She not only knows a lot about ABA but highly recommends it as a priority therapy. She is young but experienced ---she has a brother who has autism. Tom Marking wrote: I don't want to be all gloom and doom. There are other options out there. After the fiasco we had with the Meyer Center of Texas Children's Hospital we looked around for another place to do a developmental assessment. We found one: W. on, M.D. 4500 Bissonnet, Suite 350 Bellaire, Texas 77401 http://www.childrenslearninginstitute.org/our-programs/program- overview/children-neurodevelopmental-clinic/location.html We had an appointment with Dr. on this March. It was night and day in terms of the comparison between the Meyer Center and on. Finally, I had found someone who knows sh__ (a word beginning with sh) from shinola. This guy really knows his stuff and he will give you the straight dope on your kid. He still said that Zachary was autistic but he has a way of breaking it to you that's not like hitting you with a ton of bricks. He answered all of my questions. If he didn't know something he said so. He didn't pretend to be the omnipotent Oz like they do down at the Meyer Center. He's actually heard of ABA therapy and knows something about it, unlike the cretins down at the Meyer Center. So it was a good experience all the way around. I would highly recommend Dr. on for an developmental evaluation for any parent who might be suspecting his kid is on the spectrum. Even though he was outside of my insurance (which covered a ludicrous 10 percent of the bill), it was still worth it. So my recommendation to all you folks in other cities is this. Avoid the big children's hospital complexes and clinics associated with them like the plague. Try to find someone who is in independent practice, preferably an older person who has decades of experience in the field of developmental or neurological pediatrics. If you can get some good word of mouth info that's priceless. If you're close enough to Houston you might want to give on a shout. His reputation has spread so he has a long waiting list. You might have to wait 2 months or so to get in for an appointment. I hope this information helps. --- Tom Marking > > We also had a horrible experience at Meyer Center. > > In our case, it was with Dr. Vinson (chief of staff). Our ordeal > lasted for 3 years with them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 We also see Dr. M at the Meyer Center. We don't agree with everything she says but we found her very helpful. She not only knows a lot about ABA but highly recommends it as a priority therapy. She is young but experienced ---she has a brother who has autism. Tom Marking wrote: I don't want to be all gloom and doom. There are other options out there. After the fiasco we had with the Meyer Center of Texas Children's Hospital we looked around for another place to do a developmental assessment. We found one: W. on, M.D. 4500 Bissonnet, Suite 350 Bellaire, Texas 77401 http://www.childrenslearninginstitute.org/our-programs/program- overview/children-neurodevelopmental-clinic/location.html We had an appointment with Dr. on this March. It was night and day in terms of the comparison between the Meyer Center and on. Finally, I had found someone who knows sh__ (a word beginning with sh) from shinola. This guy really knows his stuff and he will give you the straight dope on your kid. He still said that Zachary was autistic but he has a way of breaking it to you that's not like hitting you with a ton of bricks. He answered all of my questions. If he didn't know something he said so. He didn't pretend to be the omnipotent Oz like they do down at the Meyer Center. He's actually heard of ABA therapy and knows something about it, unlike the cretins down at the Meyer Center. So it was a good experience all the way around. I would highly recommend Dr. on for an developmental evaluation for any parent who might be suspecting his kid is on the spectrum. Even though he was outside of my insurance (which covered a ludicrous 10 percent of the bill), it was still worth it. So my recommendation to all you folks in other cities is this. Avoid the big children's hospital complexes and clinics associated with them like the plague. Try to find someone who is in independent practice, preferably an older person who has decades of experience in the field of developmental or neurological pediatrics. If you can get some good word of mouth info that's priceless. If you're close enough to Houston you might want to give on a shout. His reputation has spread so he has a long waiting list. You might have to wait 2 months or so to get in for an appointment. I hope this information helps. --- Tom Marking > > We also had a horrible experience at Meyer Center. > > In our case, it was with Dr. Vinson (chief of staff). Our ordeal > lasted for 3 years with them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 I'm so glad to hear there is someone at Tx Childrens who rec. ABA. Who is Dr. M?? Re: Re: Meyer Center Trip Report We also see Dr. M at the Meyer Center. We don't agree with everything she says but we found her very helpful. She not only knows a lot about ABA but highly recommends it as a priority therapy. She is young but experienced ---she has a brother who has autism. Tom Marking wrote: I don't want to be all gloom and doom. There are other options out there. After the fiasco we had with the Meyer Center of Texas Children's Hospital we looked around for another place to do a developmental assessment. We found one: W. on, M.D. 4500 Bissonnet, Suite 350 Bellaire, Texas 77401 http://www.childrenslearninginstitute.org/our-programs/program- overview/children-neurodevelopmental-clinic/location.html We had an appointment with Dr. on this March. It was night and day in terms of the comparison between the Meyer Center and on. Finally, I had found someone who knows sh__ (a word beginning with sh) from shinola. This guy really knows his stuff and he will give you the straight dope on your kid. He still said that Zachary was autistic but he has a way of breaking it to you that's not like hitting you with a ton of bricks. He answered all of my questions. If he didn't know something he said so. He didn't pretend to be the omnipotent Oz like they do down at the Meyer Center. He's actually heard of ABA therapy and knows something about it, unlike the cretins down at the Meyer Center. So it was a good experience all the way around. I would highly recommend Dr. on for an developmental evaluation for any parent who might be suspecting his kid is on the spectrum. Even though he was outside of my insurance (which covered a ludicrous 10 percent of the bill), it was still worth it. So my recommendation to all you folks in other cities is this. Avoid the big children's hospital complexes and clinics associated with them like the plague. Try to find someone who is in independent practice, preferably an older person who has decades of experience in the field of developmental or neurological pediatrics. If you can get some good word of mouth info that's priceless. If you're close enough to Houston you might want to give on a shout. His reputation has spread so he has a long waiting list. You might have to wait 2 months or so to get in for an appointment. I hope this information helps. --- Tom Marking > > We also had a horrible experience at Meyer Center. > > In our case, it was with Dr. Vinson (chief of staff). Our ordeal > lasted for 3 years with them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 We also had our daughter's evaluation at Meyer Center, with Dr. Pivalizza. This was about 5 years ago. The evaluation itself was not anything out of the ordinary, but what impressed me was that Dr. Pivalizza (at my request) wrote letters of support for our ABA program that we submitted to schools and our insurance company; though admittedly it did not help us get coverage. In fact, when we went to have our son evaluated, I told her about our daughter's progress in our ABA program. She asked me to bring in video tapes and I wrote a report for her. These were included in a presentation made to a group of interns. I thought this was significant! Other experiences at Texas Children's were not great, like setting appointments, trying to get somebody at the Bridges program to call me back, etc. So if you do have to get an evaluation at TCH, I would suggest trying to get Dr. Pivalizza if she's still there, still seeing patients. Aliza Re: [Texas-Autism- Advocacy] Re: Meyer Center Trip Report We also see Dr. M at the Meyer Center. We don't agree with everything she says but we found her very helpful. She not only knows a lot about ABA but highly recommends it as a priority therapy. She is young but experienced ---she has a brother who has autism. Tom Marking <thomas.marking@ sbcglobal. net> wrote: I don't want to be all gloom and doom. There are other options out there. After the fiasco we had with the Meyer Center of Texas Children's Hospital we looked around for another place to do a developmental assessment. We found one: W. on, M.D. 4500 Bissonnet, Suite 350 Bellaire, Texas 77401 http://www.children slearninginstitu te.org/our- programs/ program- overview/children- neurodevelopment al-clinic/ location. html We had an appointment with Dr. on this March. It was night and day in terms of the comparison between the Meyer Center and on. Finally, I had found someone who knows sh__ (a word beginning with sh) from shinola. This guy really knows his stuff and he will give you the straight dope on your kid. He still said that Zachary was autistic but he has a way of breaking it to you that's not like hitting you with a ton of bricks. He answered all of my questions. If he didn't know something he said so. He didn't pretend to be the omnipotent Oz like they do down at the Meyer Center. He's actually heard of ABA therapy and knows something about it, unlike the cretins down at the Meyer Center. So it was a good experience all the way around. I would highly recommend Dr. on for an developmental evaluation for any parent who might be suspecting his kid is on the spectrum. Even though he was outside of my insurance (which covered a ludicrous 10 percent of the bill), it was still worth it. So my recommendation to all you folks in other cities is this. Avoid the big children's hospital complexes and clinics associated with them like the plague. Try to find someone who is in independent practice, preferably an older person who has decades of experience in the field of developmental or neurological pediatrics. If you can get some good word of mouth info that's priceless. If you're close enough to Houston you might want to give on a shout. His reputation has spread so he has a long waiting list. You might have to wait 2 months or so to get in for an appointment. I hope this information helps. --- Tom Marking > > We also had a horrible experience at Meyer Center. > > In our case, it was with Dr. Vinson (chief of staff). Our ordeal > lasted for 3 years with them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 We also had our daughter's evaluation at Meyer Center, with Dr. Pivalizza. This was about 5 years ago. The evaluation itself was not anything out of the ordinary, but what impressed me was that Dr. Pivalizza (at my request) wrote letters of support for our ABA program that we submitted to schools and our insurance company; though admittedly it did not help us get coverage. In fact, when we went to have our son evaluated, I told her about our daughter's progress in our ABA program. She asked me to bring in video tapes and I wrote a report for her. These were included in a presentation made to a group of interns. I thought this was significant! Other experiences at Texas Children's were not great, like setting appointments, trying to get somebody at the Bridges program to call me back, etc. So if you do have to get an evaluation at TCH, I would suggest trying to get Dr. Pivalizza if she's still there, still seeing patients. Aliza Re: [Texas-Autism- Advocacy] Re: Meyer Center Trip Report We also see Dr. M at the Meyer Center. We don't agree with everything she says but we found her very helpful. She not only knows a lot about ABA but highly recommends it as a priority therapy. She is young but experienced ---she has a brother who has autism. Tom Marking <thomas.marking@ sbcglobal. net> wrote: I don't want to be all gloom and doom. There are other options out there. After the fiasco we had with the Meyer Center of Texas Children's Hospital we looked around for another place to do a developmental assessment. We found one: W. on, M.D. 4500 Bissonnet, Suite 350 Bellaire, Texas 77401 http://www.children slearninginstitu te.org/our- programs/ program- overview/children- neurodevelopment al-clinic/ location. html We had an appointment with Dr. on this March. It was night and day in terms of the comparison between the Meyer Center and on. Finally, I had found someone who knows sh__ (a word beginning with sh) from shinola. This guy really knows his stuff and he will give you the straight dope on your kid. He still said that Zachary was autistic but he has a way of breaking it to you that's not like hitting you with a ton of bricks. He answered all of my questions. If he didn't know something he said so. He didn't pretend to be the omnipotent Oz like they do down at the Meyer Center. He's actually heard of ABA therapy and knows something about it, unlike the cretins down at the Meyer Center. So it was a good experience all the way around. I would highly recommend Dr. on for an developmental evaluation for any parent who might be suspecting his kid is on the spectrum. Even though he was outside of my insurance (which covered a ludicrous 10 percent of the bill), it was still worth it. So my recommendation to all you folks in other cities is this. Avoid the big children's hospital complexes and clinics associated with them like the plague. Try to find someone who is in independent practice, preferably an older person who has decades of experience in the field of developmental or neurological pediatrics. If you can get some good word of mouth info that's priceless. If you're close enough to Houston you might want to give on a shout. His reputation has spread so he has a long waiting list. You might have to wait 2 months or so to get in for an appointment. I hope this information helps. --- Tom Marking > > We also had a horrible experience at Meyer Center. > > In our case, it was with Dr. Vinson (chief of staff). Our ordeal > lasted for 3 years with them. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 I'm really sorry you're feeling so frustrated. You're at a place so many of us have been before and probably will be at again someday. You feel like you've hit a brick wall and nobody can help your child get better or even answer your questions. That's when you go to work researching your own plan of action and strategy. I realize you probably have already spent many, many hours, if not many, many days on the Internet, in book stores, and at conferences trying to learn more about treatments and interventions but sometimes this is all we have to do and go on. Networking with other parents (the real experts) is the best approach sometimes--I've learned so much from other autism moms. You might want to research autism studies being conducted at well known universities like the M.I.N.D. Institute at UC , The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute or even Autism Speaks (not drug studies) to see if you can participate in a study so you can get newer, maybe even cutting edge treatment options for your daughter. I'm not sure where in Southeast TX you're at, but have you considered relocating so your daughter can be in a school district that has an autism program? CReece ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 I'm really sorry you're feeling so frustrated. You're at a place so many of us have been before and probably will be at again someday. You feel like you've hit a brick wall and nobody can help your child get better or even answer your questions. That's when you go to work researching your own plan of action and strategy. I realize you probably have already spent many, many hours, if not many, many days on the Internet, in book stores, and at conferences trying to learn more about treatments and interventions but sometimes this is all we have to do and go on. Networking with other parents (the real experts) is the best approach sometimes--I've learned so much from other autism moms. You might want to research autism studies being conducted at well known universities like the M.I.N.D. Institute at UC , The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute or even Autism Speaks (not drug studies) to see if you can participate in a study so you can get newer, maybe even cutting edge treatment options for your daughter. I'm not sure where in Southeast TX you're at, but have you considered relocating so your daughter can be in a school district that has an autism program? CReece ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 My recommendation would be to see a child psychologist for an evaluation, but I live near Waco, so I don't know of one to recommend to you. Sorry. Anne -- Re: Meyer Center Trip Report Well. That sucks. I'm so emotionally drained and numb right now, don't mean to be a whiner but I'm so sick of asking everyone around here where we live, everyone I meet, all the folks at school, all the doctors at our drs office, MHMR where her eval was done..etc...and I really thought that out of all these people, SOMEONE maybe could pass on the name of a dr or clinic that maybe they'd heard good things about. What I totally cannot believe is that NOBODY can tell me even what " kind " of dr to take her to! I mean, come on, it's not like she's the ONLY autistic kid in southeast TX for crying out loud! I love our dr, trust him totally, and really expected better info, and if he didn't have knowledge of who or where to take her, I figured he'd find out. Nope. Nothing, so I said " well, the only thing I know to do is make the 3 hr drive to TCH " . That really sucks. sorry, I didn't mean to whine about my probs or " thread-jack " (if I did) > >> > >> Hi, I'm new to the group. I thought I would share a little true > >> story with y'all. > >> > >> The Meyer Center (part of Texas Children's Hospital) is supposed to > >> be the premier developmental pediatrics center in Houston and > >> perhaps Texas. Nevertheless, we had a very bad experience down > >> there last November. I thought I would share some of our > >> experiences visiting the Meyer Center so here is my trip report. > >> BTW, Dr. X is Dr. Nirupama Madduri. > >> > >> --- Tom Marking > >> > >> ********************************************************************* > >> ** > >> > >> Meyer Center Trip Report > >> Thursday, November 9, 2006 > >> > >> ************************************************************ > >> > >> Name: Meyer Center for Developmental Pediatrics > >> Affiliation: Texas Children's Hospital > >> Address: Clinical Care Center, 16th Floor > >> 6701 Fannin St. > >> Houston, Texas 77030 > >> Phone: > >> (appointments) > >> Web Site: http://www.texaschildrenshospital.org/ > >> carecenters/DevelopmentPediatrics/Default.aspx > >> > >> Patient: Zachary > >> Age: 3 years, 11 months > >> > >> The Meyer Center at Texas Children's Hospital performs > >> a variety of diagnostic and evaluation services in the area > >> of developmental pediatrics. We first received a referral > >> to the Meyer Center from our pediatrician back in May 2006 > >> which would be 6 months ago. We received paperwork from > >> the Meyer Center sometime in the June to July time period. > >> An initial appointment was scheduled for February 2007 which > >> was the earliest available. This would have been 9 months > >> after the initial referral. > >> > >> Due to cancellations we were able to move up our > >> schedule although up until the last week we thought our > >> appointment was going to be on November 22. Anyway, last > >> week Texas Children's Hospital called and informed us that > >> the doctor (which we shall refer to here as Doctor X) would > >> not be available on the scheduled date and we would have to > >> move the appointment up to November 9. Despite numerous > >> attempts to get them to return my calls at my work number > >> they kept on calling my wife at our home number. > >> > >> Anyway, today we had an appointment from 8:30 to 10:30 > >> a.m. We were told to arrive 15 minutes early to fill out > >> paperwork. Since we don't actually live in Houston but > >> rather Katy, this should have been about an hour commute for > >> us. To play it safe we left the house at 7:00 a.m. > >> Unfortunately it just happened to be one of those days where > >> there was an accident on the HOV (high occupancy vehicle) > >> lane which were taking. We were stuck there with the > >> traffic being stalled for about 30 minutes. We called > >> the Meyer Center at around 8:00 a.m. to tell them the > >> situation. They told us that we had to arrive by 9:00 a.m. > >> or the appointment would be considered cancelled. > >> > >> Somehow we got lucky and the traffic started moving > >> again. We got to Texas Children's at around 8:40 a.m. The > >> Meyer Center is up on the 16th floor but you need to change > >> elevators on the 3rd floor if you're coming from the parking > >> garage. We filled out the insurance paperwork and we didn't > >> have to wait very long before being ushered into a room > >> where the nurse proceeded to measure Zack's vital statistics. > >> She recorded his weight as 32 lbs. This was my first > >> inkling of things to come since he actually weighs close to > >> 37 lbs. > >> > >> Anyway, shortly thereafter we met Dr. X. Anyone who > >> desires her real name can send me an e-mail offline and I > >> will tell you. Her card says M.D., Department of Pediatrics, > >> Assistant Professor. I'm not sure what kind of special > >> training a developmental pediatrician receives. Anyway, > >> she basically began by asking me and my wife about our son. > >> It seemed that a lot of the questions we were asked were > >> already included in the voluminous paperwork that we had to > >> fill out months before. She didn't seem to be familiar with > >> most of the answers we had already provided in the > >> paperwork. > >> > >> Of course, our son Zack is notorious for giving us a > >> hard time when we take him to new places, especially indoors. > >> But this time he actually calmed down and stopped crying > >> after about ten minutes. We brought his favorite food with > >> us which is dried mango and he began to happily munch it. > >> So this was a major improvement in his behavior only Dr. X > >> didn't see it that way. We had brought a couple of items > >> from home in order to calm our son down. One of them was > >> a metal attachment from a cake mixer, the part that actually > >> stirs the cake mix. The other was a little plastic turtle > >> which we bought as a floatable bath toy. > >> > >> Dr. X brought out an assortment of blocks, puzzles, > >> etc. It was all made of wood except for a plastic cup and > >> it looked pretty banged up and old. There were some round > >> pegs that could be inserted into a board and some cutout > >> puzzle shapes like a square, circle, etc. that could be > >> inserted into a board with the same shapes. Needless to > >> say, Zack was entirely unimpressed with any of her > >> paraphernalia. He ignored it completely and proceeded to > >> rotate the cake mixer blade back and forth on the table. > >> After a few minutes she suggested that we take it away from > >> him and hide it so he would concentrate on her stuff. Well, > >> he got pretty upset and was looking for both the cake mixer > >> blade and the plastic turtle all over the room. Even when > >> he could not find them he still had no interest in any of > >> her stuff. > >> > >> There was a PC in the room and a screen saver was > >> running. Zack now shifted his attention to it and he > >> started playing with the mouse. I asked Dr. X if she wanted > >> us to show her what Zack could do with the computer. I'm > >> sure I could have found some screen savers he was familiar > >> with so he could select the one he wanted. Dr. X wasn't > >> interested. As far as Dr. X was concerned if he wouldn't > >> play with her wooden blocks then nothing else mattered. > >> > >> So this went on for about a half hour or so. I think > >> we were all getting a little bored including Zack. So, cut > >> to the chase: Dr. X's diagnosis was delivered to us which is > >> the following: Moderate to Severe Autism, no talk of the > >> spectrum here, this is full-blown autism we're talking about > >> here. Zachary has the language capability of an 8-month old > >> child. Somehow this translated into an IQ of around 20 > >> (if you do the math, 8 months divided by 47 months times 100 > >> is 17). He will always have an IQ of about the same. I > >> suppose I should be happy for him since at the ripe old age > >> of 100 he should be chasing young women like he's a 20-year > >> old. > >> > >> Well, I must admit that actually hearing this said hit > >> me like a direct blow to the solar plexus. Even though I > >> had been expecting some sort of diagnosis on the spectrum, > >> actually hearing it firsthand, particularly the part about > >> the IQ of 20, was still shocking. I don't think there is > >> anything that can prepare you for such a thing. Suddenly, > >> my son's whole future flashed before my eyes - no graduation > >> from high school, no college, no wedding, finally ending his > >> days like Rain Man in some government funded mental > >> institution after his parents have passed away. That all > >> flashed through my mind. What a terrible feeling that is! > >> > >> Well, after this crushing news was delivered to us they > >> sent in a Social Worker whom we shall refer to as Y. Her > >> card says LMSW which I have no idea what that means. Miss > >> Y gave us voluminous documentation on government programs, > >> local support groups, etc., etc. concerned with autism. All > >> of our specific questions about what types of therapy would > >> be appropriate were never really answered definitively. > >> > >> I did ask Dr. X if she was familiar with the work of > >> Dr. Mac's Communicating Partners. She said she had > >> heard of him but I could tell she was pretty much clueless > >> about his approach to late-talking children. I asked about > >> ABA therapy and pretty much the only thing I was told is > >> that it is very expensive and it doesn't focus on > >> communication skills. > >> > >> Well, that's about it. Dr. X will write up her > >> findings and send them to us within three days. We did do > >> some blood work for some genetic screenings before we left. > >> I guess they are going to look for Fragile X and other > >> disorders. I don't know why they didn't do this two years > >> ago when we had a lot of blood work done by the Genetics > >> Department at Texas Children's Hospital, but they didn't. > >> They are recommending an ABS (Auditory BrainStem) hearing > >> test for Zack but it would require sedating him. They are > >> also recommending a MRI brain scan which would also require > >> sedation. We haven't decided if we want to put our son > >> through the ordeal of sedation since it seems to involve > >> some kind of fasting beforehand. > >> > >> So anyway, perhaps some folks will feel I am being a > >> little unfair in my comments on Dr. X. But one undisputable > >> contradiction in her evaluation versus the school district > >> is this. My son had a FIE (Full and Independent Evaluation) > >> back in March 2006 before he was admitted to PPCD. I looked > >> it up and on page 2 it says the following: > >> > >> " Zachary's intellectual functioning appears to be > >> within the average range. " > >> > >> How can his intellectual functioning be within the average > >> range and his IQ be 20? Direct contradiction unless he > >> has dropped 80 IQ points in the last 8 months. Also, I > >> don't know too many 8-month old kids who can memorize the > >> positions of all the songs on about 20+ CD's and who can > >> navigate the Windows Explorer directory structure stopping > >> at favorite directories and launching favorite applications. > >> > >> Therefore, in the spirit of the Rotten Tomatoes movie review > >> web site, here is my rating of the Meyer Center: > >> > >> MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > >> Freshness Rating: 10% > >> > > > > > > > > > > Texas Autism Advocacy > > www.TexasAutismAdvocacy.org > > > > Texas Disability Network > > Calendar of Events > > www.TexasAutismAdvocacy.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 My recommendation would be to see a child psychologist for an evaluation, but I live near Waco, so I don't know of one to recommend to you. Sorry. Anne -- Re: Meyer Center Trip Report Well. That sucks. I'm so emotionally drained and numb right now, don't mean to be a whiner but I'm so sick of asking everyone around here where we live, everyone I meet, all the folks at school, all the doctors at our drs office, MHMR where her eval was done..etc...and I really thought that out of all these people, SOMEONE maybe could pass on the name of a dr or clinic that maybe they'd heard good things about. What I totally cannot believe is that NOBODY can tell me even what " kind " of dr to take her to! I mean, come on, it's not like she's the ONLY autistic kid in southeast TX for crying out loud! I love our dr, trust him totally, and really expected better info, and if he didn't have knowledge of who or where to take her, I figured he'd find out. Nope. Nothing, so I said " well, the only thing I know to do is make the 3 hr drive to TCH " . That really sucks. sorry, I didn't mean to whine about my probs or " thread-jack " (if I did) > >> > >> Hi, I'm new to the group. I thought I would share a little true > >> story with y'all. > >> > >> The Meyer Center (part of Texas Children's Hospital) is supposed to > >> be the premier developmental pediatrics center in Houston and > >> perhaps Texas. Nevertheless, we had a very bad experience down > >> there last November. I thought I would share some of our > >> experiences visiting the Meyer Center so here is my trip report. > >> BTW, Dr. X is Dr. Nirupama Madduri. > >> > >> --- Tom Marking > >> > >> ********************************************************************* > >> ** > >> > >> Meyer Center Trip Report > >> Thursday, November 9, 2006 > >> > >> ************************************************************ > >> > >> Name: Meyer Center for Developmental Pediatrics > >> Affiliation: Texas Children's Hospital > >> Address: Clinical Care Center, 16th Floor > >> 6701 Fannin St. > >> Houston, Texas 77030 > >> Phone: > >> (appointments) > >> Web Site: http://www.texaschildrenshospital.org/ > >> carecenters/DevelopmentPediatrics/Default.aspx > >> > >> Patient: Zachary > >> Age: 3 years, 11 months > >> > >> The Meyer Center at Texas Children's Hospital performs > >> a variety of diagnostic and evaluation services in the area > >> of developmental pediatrics. We first received a referral > >> to the Meyer Center from our pediatrician back in May 2006 > >> which would be 6 months ago. We received paperwork from > >> the Meyer Center sometime in the June to July time period. > >> An initial appointment was scheduled for February 2007 which > >> was the earliest available. This would have been 9 months > >> after the initial referral. > >> > >> Due to cancellations we were able to move up our > >> schedule although up until the last week we thought our > >> appointment was going to be on November 22. Anyway, last > >> week Texas Children's Hospital called and informed us that > >> the doctor (which we shall refer to here as Doctor X) would > >> not be available on the scheduled date and we would have to > >> move the appointment up to November 9. Despite numerous > >> attempts to get them to return my calls at my work number > >> they kept on calling my wife at our home number. > >> > >> Anyway, today we had an appointment from 8:30 to 10:30 > >> a.m. We were told to arrive 15 minutes early to fill out > >> paperwork. Since we don't actually live in Houston but > >> rather Katy, this should have been about an hour commute for > >> us. To play it safe we left the house at 7:00 a.m. > >> Unfortunately it just happened to be one of those days where > >> there was an accident on the HOV (high occupancy vehicle) > >> lane which were taking. We were stuck there with the > >> traffic being stalled for about 30 minutes. We called > >> the Meyer Center at around 8:00 a.m. to tell them the > >> situation. They told us that we had to arrive by 9:00 a.m. > >> or the appointment would be considered cancelled. > >> > >> Somehow we got lucky and the traffic started moving > >> again. We got to Texas Children's at around 8:40 a.m. The > >> Meyer Center is up on the 16th floor but you need to change > >> elevators on the 3rd floor if you're coming from the parking > >> garage. We filled out the insurance paperwork and we didn't > >> have to wait very long before being ushered into a room > >> where the nurse proceeded to measure Zack's vital statistics. > >> She recorded his weight as 32 lbs. This was my first > >> inkling of things to come since he actually weighs close to > >> 37 lbs. > >> > >> Anyway, shortly thereafter we met Dr. X. Anyone who > >> desires her real name can send me an e-mail offline and I > >> will tell you. Her card says M.D., Department of Pediatrics, > >> Assistant Professor. I'm not sure what kind of special > >> training a developmental pediatrician receives. Anyway, > >> she basically began by asking me and my wife about our son. > >> It seemed that a lot of the questions we were asked were > >> already included in the voluminous paperwork that we had to > >> fill out months before. She didn't seem to be familiar with > >> most of the answers we had already provided in the > >> paperwork. > >> > >> Of course, our son Zack is notorious for giving us a > >> hard time when we take him to new places, especially indoors. > >> But this time he actually calmed down and stopped crying > >> after about ten minutes. We brought his favorite food with > >> us which is dried mango and he began to happily munch it. > >> So this was a major improvement in his behavior only Dr. X > >> didn't see it that way. We had brought a couple of items > >> from home in order to calm our son down. One of them was > >> a metal attachment from a cake mixer, the part that actually > >> stirs the cake mix. The other was a little plastic turtle > >> which we bought as a floatable bath toy. > >> > >> Dr. X brought out an assortment of blocks, puzzles, > >> etc. It was all made of wood except for a plastic cup and > >> it looked pretty banged up and old. There were some round > >> pegs that could be inserted into a board and some cutout > >> puzzle shapes like a square, circle, etc. that could be > >> inserted into a board with the same shapes. Needless to > >> say, Zack was entirely unimpressed with any of her > >> paraphernalia. He ignored it completely and proceeded to > >> rotate the cake mixer blade back and forth on the table. > >> After a few minutes she suggested that we take it away from > >> him and hide it so he would concentrate on her stuff. Well, > >> he got pretty upset and was looking for both the cake mixer > >> blade and the plastic turtle all over the room. Even when > >> he could not find them he still had no interest in any of > >> her stuff. > >> > >> There was a PC in the room and a screen saver was > >> running. Zack now shifted his attention to it and he > >> started playing with the mouse. I asked Dr. X if she wanted > >> us to show her what Zack could do with the computer. I'm > >> sure I could have found some screen savers he was familiar > >> with so he could select the one he wanted. Dr. X wasn't > >> interested. As far as Dr. X was concerned if he wouldn't > >> play with her wooden blocks then nothing else mattered. > >> > >> So this went on for about a half hour or so. I think > >> we were all getting a little bored including Zack. So, cut > >> to the chase: Dr. X's diagnosis was delivered to us which is > >> the following: Moderate to Severe Autism, no talk of the > >> spectrum here, this is full-blown autism we're talking about > >> here. Zachary has the language capability of an 8-month old > >> child. Somehow this translated into an IQ of around 20 > >> (if you do the math, 8 months divided by 47 months times 100 > >> is 17). He will always have an IQ of about the same. I > >> suppose I should be happy for him since at the ripe old age > >> of 100 he should be chasing young women like he's a 20-year > >> old. > >> > >> Well, I must admit that actually hearing this said hit > >> me like a direct blow to the solar plexus. Even though I > >> had been expecting some sort of diagnosis on the spectrum, > >> actually hearing it firsthand, particularly the part about > >> the IQ of 20, was still shocking. I don't think there is > >> anything that can prepare you for such a thing. Suddenly, > >> my son's whole future flashed before my eyes - no graduation > >> from high school, no college, no wedding, finally ending his > >> days like Rain Man in some government funded mental > >> institution after his parents have passed away. That all > >> flashed through my mind. What a terrible feeling that is! > >> > >> Well, after this crushing news was delivered to us they > >> sent in a Social Worker whom we shall refer to as Y. Her > >> card says LMSW which I have no idea what that means. Miss > >> Y gave us voluminous documentation on government programs, > >> local support groups, etc., etc. concerned with autism. All > >> of our specific questions about what types of therapy would > >> be appropriate were never really answered definitively. > >> > >> I did ask Dr. X if she was familiar with the work of > >> Dr. Mac's Communicating Partners. She said she had > >> heard of him but I could tell she was pretty much clueless > >> about his approach to late-talking children. I asked about > >> ABA therapy and pretty much the only thing I was told is > >> that it is very expensive and it doesn't focus on > >> communication skills. > >> > >> Well, that's about it. Dr. X will write up her > >> findings and send them to us within three days. We did do > >> some blood work for some genetic screenings before we left. > >> I guess they are going to look for Fragile X and other > >> disorders. I don't know why they didn't do this two years > >> ago when we had a lot of blood work done by the Genetics > >> Department at Texas Children's Hospital, but they didn't. > >> They are recommending an ABS (Auditory BrainStem) hearing > >> test for Zack but it would require sedating him. They are > >> also recommending a MRI brain scan which would also require > >> sedation. We haven't decided if we want to put our son > >> through the ordeal of sedation since it seems to involve > >> some kind of fasting beforehand. > >> > >> So anyway, perhaps some folks will feel I am being a > >> little unfair in my comments on Dr. X. But one undisputable > >> contradiction in her evaluation versus the school district > >> is this. My son had a FIE (Full and Independent Evaluation) > >> back in March 2006 before he was admitted to PPCD. I looked > >> it up and on page 2 it says the following: > >> > >> " Zachary's intellectual functioning appears to be > >> within the average range. " > >> > >> How can his intellectual functioning be within the average > >> range and his IQ be 20? Direct contradiction unless he > >> has dropped 80 IQ points in the last 8 months. Also, I > >> don't know too many 8-month old kids who can memorize the > >> positions of all the songs on about 20+ CD's and who can > >> navigate the Windows Explorer directory structure stopping > >> at favorite directories and launching favorite applications. > >> > >> Therefore, in the spirit of the Rotten Tomatoes movie review > >> web site, here is my rating of the Meyer Center: > >> > >> MEYER CENTER, TEXAS CHILDREN'S HOSPITAL > >> Freshness Rating: 10% > >> > > > > > > > > > > Texas Autism Advocacy > > www.TexasAutismAdvocacy.org > > > > Texas Disability Network > > Calendar of Events > > www.TexasAutismAdvocacy.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Dr. Lotze in the Blue Bird clinic at TCH often recommends ABA but he is the only one I've heard do so. kgreeceman@... wrote: I'm really sorry you're feeling so frustrated. You're at a place so many of us have been before and probably will be at again someday. You feel like you've hit a brick wall and nobody can help your child get better or even answer your questions. That's when you go to work researching your own plan of action and strategy. I realize you probably have already spent many, many hours, if not many, many days on the Internet, in book stores, and at conferences trying to learn more about treatments and interventions but sometimes this is all we have to do and go on. Networking with other parents (the real experts) is the best approach sometimes--I've learned so much from other autism moms. You might want to research autism studies being conducted at well known universities like the M.I.N.D. Institute at UC , The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute or even Autism Speaks (not drug studies) to see if you can participate in a study so you can get newer, maybe even cutting edge treatment options for your daughter. I'm not sure where in Southeast TX you're at, but have you considered relocating so your daughter can be in a school district that has an autism program? CReece ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Dr. Lotze in the Blue Bird clinic at TCH often recommends ABA but he is the only one I've heard do so. kgreeceman@... wrote: I'm really sorry you're feeling so frustrated. You're at a place so many of us have been before and probably will be at again someday. You feel like you've hit a brick wall and nobody can help your child get better or even answer your questions. That's when you go to work researching your own plan of action and strategy. I realize you probably have already spent many, many hours, if not many, many days on the Internet, in book stores, and at conferences trying to learn more about treatments and interventions but sometimes this is all we have to do and go on. Networking with other parents (the real experts) is the best approach sometimes--I've learned so much from other autism moms. You might want to research autism studies being conducted at well known universities like the M.I.N.D. Institute at UC , The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute or even Autism Speaks (not drug studies) to see if you can participate in a study so you can get newer, maybe even cutting edge treatment options for your daughter. I'm not sure where in Southeast TX you're at, but have you considered relocating so your daughter can be in a school district that has an autism program? CReece ************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2007 Report Share Posted August 30, 2007 Well, it's not, but then the question is 'what do you want out of a medical diagnosis? " (oh--AVOID the Learning Center, by the way). The problem is that the medical community in Houston is VERY conservative and very far behind when it comes to anything having to do with autism. I can count on one hand the number of docs who recognize non-genetic medical problems that many children with autism have and that these can even be treated! The medical center is all about size. As far as I'm concerned Dr. Ralph an, the president of the TCH, is better at building big buildings than he is at encouraging innovative and effective treatment of children. They have yet to receive one of the many grants for innovative research that have been given out by the National Institute of Mental Health. So most docs in Houston are still looking at autism as a " life sentence " and giving a unreasonably (in most cases) poor prognosis--especially these days with the work that Dr. is doing at U of Arkansas (imagine that--a doc at U of Arkansas can get a grant from NIMH and someone at the GREAT and POWERFUL Texas Children's can't-- sorry, I digress.) or the breakthroughs with oxytocin, and rumors of Dr. Haley's developed a wonderful and safe new chelator. . . . . . more studies being done with NAET and craniosacral therapy-- there is A LOT of hope these days. A LOT. But most of the physicians in Houston who work with kids with autism are grim, very grim indeed. Phooey on them, I say. (Phooey is a technical term by the way.) The very first person I spoke to after a family friend suggested that my child most likely had autism, was another mother of a kid w/autism who happened to be a certified special ed teacher. She told me two things that really guided my actions and decisions in the early days (now 6 years ago). She said that getting a diagnosis had been a waste of time for her, and that nothing in her teacher training and preparation had prepared her to teach her own child. Nothing. I decided not to get a diagnosis until I wanted to get the insurance to pay for ABA treatment--that was my reason for going through the process. The only good thing that came out of the whole shabang was that my son was given an additional diagnosis of : " expressive receptive language disorder " which was the diagnosis under which I was able to obtain 2 hours of speech a week for him for a year--not autism. The autism Dx got me practically zilcho paid for by insurance in the way of treatments that turned out to be most effective for him. Now I do agree with R. and Geraldine that there can be other valid reasons to get some of the other neurological testing done because right now, autism is a bit of a garbage can Dx. In 10 or 15 years when they finally get the various sub-categories sorted out, we may find that our children have something very different and were just lumped into the same category because they didn't have anything else. . . . . but for us, 6 years ago there were no pressing reasons to obtain a Dx immediately. However, with a girl, you probably would be well advised to do some further testing. I have found that the people I know who have girls often find their girls have other medical issues that need to be addressed. So, going back to my original question, what do you want out of the diagnostic process? Because you mentioned that your daughter was 5. That means even if she did get an autism or pdd Dx, she would only qualify for insurance under the change in Texas law (assuming that you have a state regulated policy or CHIP or Medicaid) until she turned 6 (possibly longer). . . .If I were in your shoes, I would almost consider getting a co-morbid Dx as a backup in case she aged out before you got the Dx for her. I would recommend UT Med Center. and that you really seek to network with other parents of girls to find what they found to be most helpful in the process. Try to find parents of kids who are doing things similar to what your daughter is doing and see what helped them. I think that's one of the most useful things I've ever heard Portia Iverson (co-founder of CAN) say. S. Re: Meyer Center Trip Report oh boy, this isn't very encouraging. I've been working for months towards the goal of getting a referral for our 5 yr old daughter to TCH...her referral form is being " reviewed " for referral to the Learning Center or directly to the Autism clinic (I believe that's how the secretary put it to me). Our daughter has already been diagnosed with autism, and is already receiving services from the school...but nobody here has any *experience*. I was so hoping to fill that gap with TCH...I thought maybe they could give us & the school some solid recommendations...and of course identify any other issues she may have, etc...am I wasting precious time? I just assumed that THC would be the best place to take her. > > Hi, I'm new to the group. I thought I would share a little true > story with y'all. > > The Meyer Center (part of Texas Children's Hospital) is supposed to > be the premier developmental pediatrics center in Houston and > perhaps Texas. Nevertheless, we had a very bad experience down > there last November. I thought I would share some of our > experiences visiting the Meyer Center so here is my trip report. > BTW, Dr. X is Dr. Nirupama Madduri. > > --- Tom Marking > > Recent Activity a.. 11New Members b.. 1New Photos Visit Your Group Yahoo! Groups Having cancer is hard Finding help shouldn´t be. Healthy Eating A Yahoo! resource for families on how to eat healthy Beauty Groups on Yahoo! Groups A great place to connect and share. . Quote Link to comment Share on other sites More sharing options...
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