Help for

[Guest guest]

:

I am so sorry for all that you have gone through. You must be terrified.

Where do you live in Florida? Is there a chance that you can get to Center

for Liver Diseases at University of Miami? That is where my hepatologist

practices, Dr. Raj Reddy. He is very supportive and kind. He is connected

with Cedars Medical Center in downtown Miami.

Please e-mail me directly if you need further info or help.

Warmly,

(AIH, Miami)

[Guest guest]

,

Thanks for the support, I'm doing better today! I live in Fort Myers, so

Miami is concievable if I get in a tight spot and can't find anyone around

here! I'll save your post just in case... What is that 3 hours? Haven't

been to Miami in years! Thanks again, and take care!

(AIH)

Florida

[Guest guest]

,

I would suggest a complete neurological exam, tests, etc, by a Board

Certified Neurologist. I feel for you hurting so bad; please get checked

out. Neurology is a big field now, and there are many tests to determine

what's going on. We can't exactly diagose each other (!), but in my own

life stress and pain BRING ON MY CMT symptoms!

~ Gretchen

[Guest guest]

Hi Sue,

I would recommend the use of visual supports for helping understand

sequences of events and generally give him another channel (visual) in which to

take in information. Visual supports combined with a reward can really help

children get through that transition of leaving a highly desired activity.

I want to mention here that personally, I use " rewards " or " reinforcers " to help

children comply generally only in limited situations, such as low cognitive

ability; when there is an autistic-like lack of understanding of why people must

do things in certain ways (social knowledge); and when behaviors are extreme

(violent toward people or property). In this case Jeffery may benefit from

knowing there is a reward for complying with behavior expectations because a) he

may have a language comprehension impairment, and his behaviors may become

violent, such as his loud screaming.

Please buy or borrow the book " Visual Strategies for Improving Communication " by

A. Hogdon, CCC-SLP. You might also find good ideas in her other book,

" Solving Behavior Problems in Autism, " even though Jeffery does not have autism.

Both books teach and show you how to design and implement visual strategies to

help children understand and comply with expectations. It is written for

everyone, not just the teachers and therapists, so it is easy to understand.

It sounds like you know what you have to do already, with discussing the problem

before hand, giving plenty of warning, and trying to have a " end of activity

ritual " (three slides or whatever). Perhaps the addition of visuals and a

reward will help. You must also have some back up plans for what to do if

refusal continues. There are ideas for those in the books too. Let me know if

you need more information, but it would help if you had seen one of these books

for some background understanding first. Call your school SLPs, OTs or special

educators to ask if they have a copy. If you find it maybe you can photocopy

pages you need rather than buy. I think the books are around $35-40 each.

Deborah L. Van den Beemt, MS CCC-SLP

in NH/VT

> Date: Thu, 1 May 2003 14:47:21 EDT

> From: snoozinc@...

> Subject: Need help with behavior problems/9y.o. has temper tantrums -- long,

off topic

>

> I apologize in advance that this is only marginally related to apraxia. I'm

> a regular eavesdropper on this list, with a son, aged 9 with mental

> impairment and severe verbal apraxia, hypotonia, other speech impairments.

> Name: .

>

> is mild-mannered, compliant, passive, handsome, cooperative and happy

> -- MOST of the time. His language skills are severely limited by the

> conditions described above. His developmental age is probably closer to 4

> than 9, with mixed skills.

>

> Here's the problem: On some occasions, when he's having a really good time

> doing something, for example, he absolutely REFUSES to stop doing it and will

> scream (very loudly), cry, run away, dig in his heels (and even sometimes

> throw himself on the ground and kick his feet -- though this is rare). The

> recent case that has prompted me to seek help was a visit to the local indoor

> pool. He LOVES the pool, the slides, especially. I had a discussion with

> him in advance about the importance of leaving when it's time and he agreed

> to it all (with the carrot of the pool dangling in front of him). I gave him

> ample warning, a certain amount of time and number of trips down the slide.

> I counted them out with him and then said it was time to go. He wouldn't

> leave. It's hard to drag a wet, half-naked, 70-LB. screaming boy out of a

> pool area, get him showered, shampooed and dressed, etc. He screams so loud,

> it's painful to your ears. People literally couldn't help staring. I'm sure

> some of them understood, but for some it was really understandably

> disturbing. I need help figuring out how to change his behavior. I took him

> to a behavioral specialist for potty training but I think that would be a

> last resort. I'm open to any suggestions short of giving up on all public

> activities!! If you have advice, please bear in mind that his IQ is around

> 70, so concepts of time and other abstractions are very difficult for him to

> understand still.

>

> If you know of other lists or websites for parents of children with mental

> impairment, I would appreciate that, because I know that a lot of your

> children are pretty normal cognitively. 's apraxia is only one of his

> challenges.

>

> Thanks for reading all of this if you have and thanks in advance for any

> leads, tips, etc.

>

> Sue C. in Michigan

[Guest guest]

Sue,

I am glad Deb responded to you about 's behavior. I do all the

things you do and also have had trouble with my son leaving a swimming area!

It IS embarrassing! Deb's ideas were the only ones I could think of also

but she expressed it much more eloquently than I ever could have! What has

worked for my son is to tell him ahead of time that if he doesn't come

quietly and without arguing he will lose a privilege that day...but it

sounded like that may now work with your son because of the time issue and

abstract concept. It sounds like you are creative ....maybe thinking of

different ways to implement Deb's ideas you will hit on something that

works. I certainly feel with you!!!!! Carol

[Guest guest]

Deborah thanks once again for your wonderful advice and insight. I

do have a question however about this that is off in another path

(so what else is new -right?!) It is possible that a child (or

adult) could also be showing aggression due to high levels of

frustration?

Yes most of the children in our group (today) have children that are

excelling in school -whether they speak just like " everyone else " or

not. In our society it's auto assumed a nonverbal two year old is a

late talker. For those two year olds that are tested -they are given nonverbal

IQ

tests that are not verbal language based like quite a few of the IQ

tests given to older children. (another reason for early intervention!)

How many times do you hear

" She's so bright she first started talking even before she was a

year old! " ? You wouldn't hear " She's so bright she didn't need

glasses to see even before she was a year old! " Just like visual and hearing

-speech ability has

nothing to do with cognitive ability, in fact most with speech

impairments have average to above average intelligence

We can't test IQ the same way for the speech impaired as those that

are not speech impaired -but strangely it still happens.

A problem today that we address in The Late Talker book is that

those with speech impairments continue to be overlooked for

treatments in early intervention years because they are viewed

as " just late talkers " Then when they don't receive the appropriate

therapies needed to help them overcome these same children grow up

to be negatively judged by almost all later in life if they continue

to remain nonverbal or essentially nonverbal. Even those with

slight speech impediments are judged poorly. (well -other than

Scooby Doo)

Sue -since is nine years old, is it possible his cognitive

ability is not correctly assessed? Was he always viewed as mentally

retarded -even at two? Do you know what type of intelligence tests

were used for Jeffery? Were IQ tests done by the school or private?

In our large group I can't even begin to count the number of

children his age who have fallen through the cracks and were

misdiagnosed as mentally retarded -then only to be found to be not

MR -but globally apraxic and able to learn once provided with the

appropriate therapies later in life. Shocked - the

professionals of course that misdiagnosed the child MR can then only

say they are " sorry "

Two that come to mind quick -Robin's 19 year old daughter

who was misdiagnosed all her life as moderately mentally retarded

and moderately autistic, which she was neither -she was globally

apraxic. And all four of Loyd's children were misdiagnosed as

mentally retarded only to be found to all be apraxic -and doing

amazing today http://www.cherab.org/information/4specialkids.html

is a teacher and her two oldest are today testing as " gifted "

they are so bright and doing that well in school!

at 19 was only diagnosed as globally apraxic and only

started receiving appropriate speech therapies (and ProEFA) in the

past year. Today -18 years later -she is talking -for the 'first'

time in her whole life! That is just tragic that this poor child

went her whole life misdiagnosed and misjudged.

There is still much time for Jeffery even if he is cognitively

impaired -if he can find a voice to communicate. Have they provided

with augmentative communication -sign, PECS, augmentative

device, and taught him how to utilize in daily life? If so which

kind?

How is Jeffery with computers or games where speech and global

movements are not critical? If he is using or playing with computer

games or educational programs -what age range is he in -for toys in

general? I used to be a toy inventor -and I find that you can

productively use toys for younger or older ages than the child's

biological age if used with supervision in directed play.

I remember reading about a woman who tested as mentally

retarded all her life until they taught her to type -and then once

she had a way to communicate what she knew -she tested as a genius.

That really inspired me.

To me the words mentally retarded only mean that we have not yet

learned how to get through to educate -or they have yet to learn how to

let us know what they know. Anyone that knows me knows I am the

opposite of apraxic when it comes to talking. However even though I

have a 159 IQ when given an IQ test in English -if I was given an IQ

test in Japanese I'm sure I would score below 25 " Idiot " -so which

test would be appropriate for me?

http://community-2.webtv.net/Archure/Genius/

=====

[Guest guest]

Whew!! , I have a zillion emotions and thoughts in response to your long

e-mail! One is that I really appreciate your input and all the time you took

to write and to think about my son. Thank you.

Some answers for you:

He's been given nonverbal IQ tests whenever he's been tested. I don't

remember the name of it right now.

The first person to say he would be mentally impaired was a neurologist and

it was when was only 9 months old!!! Needless to say, we stopped

seeing that neurologist. He just seemed way too quick to put in a

category, even though he could find no actual cause or diagnosis.

was, however, globally delayed in almost all aspects of development

throughout his life so far -- it was most noticeable in the beginning in his

body, which was very low tone (sat at 1 year, crawled at 18 months, walked at

2 1/2, etc.) I did not really accept the diagnosis of MI until the last few

years. And even now, I know and agree with what you're saying about mental

retardation just being a matter of not knowing how to access their minds.

has received a lot of intervention from a very young age (less than

one year old). OT/PT/ early intervention/ST and sensory integration therapy.

All of it has helped. He also rides horseback.

Yes, he plays computer games and LOVES them! He plays the educational

software type ones and figures it out pretty much on his own.

He's had a communication device since he was three, though not one of them

has been truly useful. He's been taught some sign language -- again, since

age 1, and he was assessed by Kaufman and attended the Kaufman center

for therapy for a while.

I really don't think he's been misdiagnosed with mental retardation. However,

it certainly would be heartbreaking to find out that he has normal

intelligence when he's 25 and all these years he's been under producing

because we couldn't figure out how to reach him. I'm not sure where I would

begin to explore that issue. Certainly a big part of his life is about his

frustration at not being able to communicate as easily as the rest of us his

needs and desires. Since I've given you a summary of most of the therapies

and approaches we've looked at, do you have something specific in mind that

you think I should do to determine whether his cognitive level is different

than I think? I am open to your ideas and, again, appreciate your input!

Sue, and as said to me today for the first time, " 's Mom. "