Re: Meyer Center Trip Report

August 28, 2007

Hi Tom,

We had a very similar experience seven years ago when my son was diagnosed

by the dept. head of Ped. Neurology at Texas Children.

When we asked him what is the course of treatment...He said: What school

district do you live in? ... That was it...

Nothing about ABA, diet, any experimental things that we may like to

consider.....nothing.

He was actually annoyed by my questions.

However, We recently saw Dr. , whom we really liked. Ofcourse, he was

skeptical about all we are doing : DMSA, vit/supplements, B 12 injections,

scoping,...etc..but was very understanding, patient, and really took his

time and was very respectful.

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.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

>

August 28, 2007

Hi Tom,

We had a very similar experience seven years ago when my son was diagnosed

by the dept. head of Ped. Neurology at Texas Children.

When we asked him what is the course of treatment...He said: What school

district do you live in? ... That was it...

Nothing about ABA, diet, any experimental things that we may like to

consider.....nothing.

He was actually annoyed by my questions.

However, We recently saw Dr. , whom we really liked. Ofcourse, he was

skeptical about all we are doing : DMSA, vit/supplements, B 12 injections,

scoping,...etc..but was very understanding, patient, and really took his

time and was very respectful.

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.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

>

August 28, 2007

Hi Tom,

We had a very similar experience seven years ago when my son was diagnosed

by the dept. head of Ped. Neurology at Texas Children.

When we asked him what is the course of treatment...He said: What school

district do you live in? ... That was it...

Nothing about ABA, diet, any experimental things that we may like to

consider.....nothing.

He was actually annoyed by my questions.

However, We recently saw Dr. , whom we really liked. Ofcourse, he was

skeptical about all we are doing : DMSA, vit/supplements, B 12 injections,

scoping,...etc..but was very understanding, patient, and really took his

time and was very respectful.

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.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

>

August 28, 2007

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%

>

August 28, 2007