Re: Frustrated w/ Children's Hospital

[Guest guest]

We as parents need to get together and show the world our children are medically

ill. We have to show them massive data that they would not be able to ignore.

JR

From: alaineandpaul@...

Date: Mon, 16 Nov 2009 20:54:20 +0000

Subject: Frustrated w/ Children's Hospital

Hi all,

(age 8), had his neuropsych eval over the last two weeks. I generally take

all this w/ a grain of salt, but figure if I get a tidbit or two of halfway

decent information then I ahead. Well, I went in to meet w/ the doctor to

discuss the results. Scattered skills, which is nothing new. BUT, she's saying

his cognitive (I guess reasoning and critical thinking) is at age 2, while other

learned skills are ranging between ages 6 and 7. So, because of the cognitive

gap, their report will say autistic AND intellectually impaired. She kept trying

to reassure me that they were doing all they could w/ the genetic testing

research, blah blah blah, but that this would ultimately be helpful in making

sure that he receives all the services he needs, etc., especially when he gets

to be 14 and picks a vocational training program in high school.

Amazing to me how many clueless PhD's are out there......

Needless to say, I will NOT be sharing the report, as I don't want school to

have any reason to lower their expectations of his abilities. We're actually

pretty happy w/ the school team, so we're just going to leave that be.

Thanks for letting me vent!!!

Alaine

[Guest guest]

Hi Alaine--

I had a similar experience--not sure it was at the same Children's

Hospital but likely. I had to argue pretty emphatically that " mentally

retarded " would not be put on my son's record so she put " intellectually

impaired " ...reluctantly. Funny, but his teacher's think he's pretty

smart, and most people recognize that the MR label stops people from

trying to help as the bar is set so low. I will not be sharing our

report either for the exact same reasons. I was disgusted that a) the

psych offered so little hope and that for $2,000 and three visits

(two of them lasting 15 minutes) the best you could expect was a nasty

label, no helpful assistance, and only a list of web sites to consult. I

don't think she realized how many doors her report would likely close.

Four separate parents later told me I should have stayed away from a

psychologist for the reasons you noted.

Bev

alaine wrote:

>

> Hi all,

>

> (age 8), had his neuropsych eval over the last two weeks. I

> generally take all this w/ a grain of salt, but figure if I get a

> tidbit or two of halfway decent information then I ahead. Well, I went

> in to meet w/ the doctor to discuss the results. Scattered skills,

> which is nothing new. BUT, she's saying his cognitive (I guess

> reasoning and critical thinking) is at age 2, while other learned

> skills are ranging between ages 6 and 7. So, because of the cognitive

> gap, their report will say autistic AND intellectually impaired. She

> kept trying to reassure me that they were doing all they could w/ the

> genetic testing research, blah blah blah, but that this would

> ultimately be helpful in making sure that he receives all the services

> he needs, etc., especially when he gets to be 14 and picks a

> vocational training program in high school.

>

> Amazing to me how many clueless PhD's are out there......

>

> Needless to say, I will NOT be sharing the report, as I don't want

> school to have any reason to lower their expectations of his

> abilities. We're actually pretty happy w/ the school team, so we're

> just going to leave that be.

>

> Thanks for letting me vent!!!

>

> Alaine

>

>

[Guest guest]

I agree.

I stopped paying neurologist to suggest speech therapy a long time ago. Almost

all of the big med guys need a label of morally destitute and emotionally

barren..

>

> Hi all,

>

> (age 8), had his neuropsych eval over the last two weeks. I

> generally take all this w/ a grain of salt, but figure if I get a

> tidbit or two of halfway decent information then I ahead. Well, I went

> in to meet w/ the doctor to discuss the results. Scattered skills,

> which is nothing new. BUT, she's saying his cognitive (I guess

> reasoning and critical thinking) is at age 2, while other learned

> skills are ranging between ages 6 and 7. So, because of the cognitive

> gap, their report will say autistic AND intellectually impaired. She

> kept trying to reassure me that they were doing all they could w/ the

> genetic testing research, blah blah blah, but that this would

> ultimately be helpful in making sure that he receives all the services

> he needs, etc., especially when he gets to be 14 and picks a

> vocational training program in high school.

>

> Amazing to me how many clueless PhD's are out there......

>

> Needless to say, I will NOT be sharing the report, as I don't want

> school to have any reason to lower their expectations of his

> abilities. We're actually pretty happy w/ the school team, so we're

> just going to leave that be.

>

> Thanks for letting me vent!!!

>

> Alaine

>

>

------------------------------------

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute, the Parent Coalition, or the list

moderator(s).

[Guest guest]

I have a friend whose son is labeled borderline MR.  He has fetal alcohol

syndrome, and also seemed to have PDD when he was younger.

She was a school teacher, and she works with him every night studying and

helping him learn.  The kid makes better grades than my kids do, with 20 & 45

points higher IQ than he has.  He is more successful in math than my oldest.

His mom complains of the teachers not helping in a lot of areas and how he gets

passed by in school.  But then in the same sentence she will make a comment that

" I know this is probably as far as he's gonna go, but shouldn't they we working

on it anyway? " .  Her level of expectation for him is sad, believing he'll be in

jail or a janitor by the time he is grown (he also has a tendency towards

violence - very scary).

One thing I know is that this kid gets so much brighter and more loving when he

has a fever.  She has even observed him " getting " some things while working on

homework when it turned out he had a fever.  There were several things that were

better when he had a fever, and I believe that he is and that he tested

poorly because of a cognitive fog.  I've been trying to convince her to try

, or at least get the labs done just in case, since she feels so pessimistic

about her future, what is there to lose?  But finances don't permit it, which I

can understand.

Anyway, I remember some similarities w/fetal alcohol syndrome and that made

me wonder.  I've experienced some serious cognitive dysfunction that lasted

until I was actually treated (doxycycline is my d.o.c.).  There is documentation

of people with chronic fatigue syndrome losing 20 IQ points.  (I will have my

youngest son's IQ retested when I see the fog fully lift, even though his was

perfectly average, just because I would like to have any changes documented.) 

I shudder to think how many kids are written off because they're in a fog, not

actually MR.  I was tested for LD and turned out to have an extremely high IQ -

for all the good it did me.  I'd rather have an average IQ with a functioning

brain any day.  I just can't see the value of that number until you get in the

really lows.

Maybe things will improve one day.  And we can get out there and tell people,

too!

Good luck, and keep fighting for that child!  And in a couple of years, when

your child is doing better from treatment, you can have that retested, and show

the studies where CFIDS lose up to 20 IQ points when they're ill.

________________________________

From: Beverly <bevanderson@...>

Sent: Mon, November 16, 2009 8:53:31 PM

Subject: Re: Frustrated w/ Children's Hospital

Hi Alaine--

I had a similar experience--not sure it was at the same Children's

Hospital but likely. I had to argue pretty emphatically that " mentally

retarded " would not be put on my son's record so she put " intellectually

impaired " ...reluctantly. Funny, but his teacher's think he's pretty

smart, and most people recognize that the MR label stops people from

trying to help as the bar is set so low. I will not be sharing our

report either for the exact same reasons. I was disgusted that a) the

psych offered so little hope and that for $2,000 and three visits

(two of them lasting 15 minutes) the best you could expect was a nasty

label, no helpful assistance, and only a list of web sites to consult. I

don't think she realized how many doors her report would likely close.

Four separate parents later told me I should have stayed away from a

psychologist for the reasons you noted.

Bev

alaine wrote:

>

> Hi all,

>

> (age 8), had his neuropsych eval over the last two weeks. I

> generally take all this w/ a grain of salt, but figure if I get a

> tidbit or two of halfway decent information then I ahead. Well, I went

> in to meet w/ the doctor to discuss the results. Scattered skills,

> which is nothing new. BUT, she's saying his cognitive (I guess

> reasoning and critical thinking) is at age 2, while other learned

> skills are ranging between ages 6 and 7. So, because of the cognitive

> gap, their report will say autistic AND intellectually impaired. She

> kept trying to reassure me that they were doing all they could w/ the

> genetic testing research, blah blah blah, but that this would

> ultimately be helpful in making sure that he receives all the services

> he needs, etc., especially when he gets to be 14 and picks a

> vocational training program in high school.

>

> Amazing to me how many clueless PhD's are out there......

>

> Needless to say, I will NOT be sharing the report, as I don't want

> school to have any reason to lower their expectations of his

> abilities. We're actually pretty happy w/ the school team, so we're

> just going to leave that be.

>

> Thanks for letting me vent!!!

>

> Alaine

>

>

------------------------------------

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute, the Parent Coalition, or the list

moderator(s).

[Guest guest]

Thanks, everyone!

What scares me is the families for whom these docs are THE experts. If we

hadn't found Dr G, we'd be in the same boat - hearing this stuff from these

" experts, " altering our perception of our kids, changing our expectation levels.

I'll tell ya, that conversation with this dr was WAY worse for me than hearing

PDD-NOS four years ago. I'm past it - now I'm just ticked off.

Alaine