newest concerns - IQ

[Guest guest]

Dear Michele,

Can I throw out a couple of things-

1st. Hasn't Aubrie been ill-increased congestion? That can bring her

attention down severely.

2. works very hard to maintain. Do U feel Aubrie may be having a

hard time picking up the gauntlet, if in fact, she also has to work hard (from

a sensory and processing, hearing, seeing) aspect (forgive me for not going

back and reviewing her history,). She had a nice break at Xmas time, and

had more control over her own time. As a teacher, u've probably seen kids

that have a tough time getting back in the groove.

3. I've seen respond similarly, with " I don't know " and " off the

wall " questions-never knew why for sure-but she did rebound.

4. Are there any changes at school that U may not be aware of.

5. how about letting her classroom teacher provide extra help for a bit so U

can have a chance to step back and think about whats going on.

6. I'm not surprised about the numchucks-crossing the median line is a

challenge, (side to side) and then reversing direction (with the up and down

movement) at the same time is quadruple difficult.-she's working thru every arc,

position, of the figure 8-its not flowing yet-how about drawing it on paper in

a regular sitting position first, see how she does, then tracing the figure

drawn on the wall, she if she just needs to familiarize her brain with the

reverse movement. Someone familiar with proprioceptive sense could likely

explain it.

7. U know these kids-even if they don't learn in the most direct or

expeditious manner, they do still learn, I consider it their inate creativity,.

8. be gentle with yourself, and let time be your friend.

[Guest guest]

I need to share my newest concerns in an effort to think out loud and get

some understanding. Pam, I'll look forward to your thoughts.

I've always been relieved to think that Aubrie has normal cognitive ability.

Sometimes, she is just smart as a whip. And I think she must be a genius to

have made such sense out of her world given her altered sensory input and

unusual experiences (compared to other kids). She is reading at the top of

her grade level. I have no clue how she manages it. And she gets good

grades on her weekly spelling tests by memorizing cuz she can't accurately

sound out words. Math has been the area that eludes her the most. Even so,

on her timed math fact tests, she has averaged 20 problems/minute and keeps

moving up the levels - maybe not as fast as her peers, but not ridiculously

slow either.

Now - after the Christmas holiday - less than 2 weeks - she got a D on a

review spelling test. Meaning she didn't retain any of the words she was

able to memorize weekly. In her spontaneous writing, she never spells

correctly. It's as if spelling is for the test only and has no meaning in

real writing. She misspells words she knows - like " love " . She is now

getting only 11-12 problems/minute on her math tests. I'm keeping records

and watching to see how long it takes for her to recoup the skills lost in 2

weeks. Our district is big on the " regression and recoupment " criteria for

extended school year services even tho the law says that that can't be the

only criteria - another story.

Anyway - last night she also had her first study guide for social studies.

The test is Thu so they must have been studying this stuff for quite some

time. The topics are continents, countries, landforms, bodies of water,

etc. She didn't have a clue about most of it. The only stuff she remembers

is some of the easily remembered rote stuff: national song, bird, what's a

huge body of salt water, etc. So I got out the globe for us to look at

these things more closely. Still, she's just not processing it like other

kids. I can't put my finger on it - I'm not trained to dx this stuff. But

I am a teacher and I can tell you she's not going about it " right " .

Something's off. I am worried that we are in for serious challenges as the

topics get more difficult. I think part of it is attention - she was full

of off-the-wall questions about the globe itself - and this is one we've had

for ages so it's not just that it was new. Part of it appears to me to be

processing. I'm at a loss about what to do.

And I'm avoiding the grief that comes with the realization that she's not

going to be able to learn everything like her peers. I don't want to jump

the gun on this, but I don't want to bury my head to protect my feelings

either.

Also-In karate, they began working with numchucks. One move is a figure 8 -

sideways. You know, chucks are the sticks (theirs are soft) attached by

string or chain that you swing. So she's supposed to hold on to one and the

other swings in a sideways 8 in front of her. She just can't make her arm

do it. Even when we do it together, she is going against me. It's like she

just can't do the upward movement - she wants to do 2 regular circles. We

tried all kinds of ways to practice, and she's not getting it. I'm getting

frustrated and worry that I will lose patience to help her.

Michele W

Aubrie's mom 8 yrs

[Guest guest]

Michele,

It would seems as though and Aubrie are on the same path....Math problems

have posed a huge problem along with retention of learned spelling words. I just

recently gone over this with our team ...who surprisingly gets it.

As a child with a dual sensory impairment knowledge gained incidentally is not

there.

These concepts must be taught. I have requested the hearing impaired teacher

to observe this ....She jots down notes and we discuss this via email...I have a

list of addition and subtraction words and I can use I try to incorporate

these in everyday.

The spelling words UGH... does spell phonetically and can sometimes catch

and correct how he spells some words...one issues with spelling is " the silent

E " ...he was quite funny when we were talking about silent E...he said I 'm

hearing impaired Mom I don't hear it....I had to explain that everyone whether

they can hear or not can't hear a silent E ...it is silent...he laughed...The

other is capitals he told me he doesn't hear in capitals so how does he know

where they belong...We practice old and knew spelling words all the

time...'s teacher usually take the one or two words that all the child miss

and continue to put in the weekly spelling words mostly as bonus points ...she

continues until everyone learns them....

Also when finally got his triennial review ...the doctor suggested that

children who are deaf/blind will more than likely have a processing disorder.

However it can not be tested accurately until the child is 9 and at that it may

not be clear.. We are aware and plan on testing in September.

Many would have been eager to jump on the LD bandwagon instead of

understanding that most if not all can be attributed to dual sensory impairment.

Recently our new leader wanted to cut out hearing impaired services....I asked

what planet she was from....DUH !...she has insisted a cut I have insisted on

mediation..with the new component of IDEA if she takes me to court she has

burden of proof...I saw the principal ( on 's side) this morning and she

said the new director does not want to go this route she will probably drop

this.

We can never get too comfortable can we?

Ellen mom to 8

[Guest guest]

-

Thanks for all the support and things to rethink. Much of what you said are

things I know but have forgotten to think about. I did try writing the

figure 8 on paper -- still extremely challenging. We'll just keep at it til

she gets it or we decide to nevermind that part of things.

You're right in that the recent congestion could play a big part in her lack

of attention etc. But I guess my concern is that congestion will be a

continuing problem and we need to find a way for her to continue on with

things even during the congested winter months. I think of it like my

struggle with PMS -- I just can't lose a week a month to it.

So some things are explainable, but still remain a problem in my mind.

I will have a monthly meeting with her teacher soon and will discuss it with

her. Then it may warrant a meeting of the IEP team to discuss this stuff.

If we wait til the spring meeting to prepare for 3rd grade we lose the

chance to figure some things out and have solutions in place before 3rd

grade starts.

Thanks again for your help!

Michele W

[Guest guest]

Ellen-

I love 's thoughts about hearing the silent E and capitals! See how

smart these kids are??? What a concept!

We looked at a learning disability in math at Aubrie's triennial this year

and came up with it lacking. We decided that math is commonly a problem

with vision impairment and that her difficulties can be attributed to those

sensory issues. However, that doesn't leave us with lots of ideas to help.

And now, with this social studies thing, I really believe that her lil'

brain thinks and processes differently.

We have not been seeing the new neuropsych on a regular basis but I think

I'll contact her too and see how she can help gain understanding. So far,

she's been looking at the OCDish stuff, aspergers-ish stuff, and attention.

Since those aren't critical for us right now and our lives are filled with

other things, we've been haphazard in our visits. Perhaps it's time to get

purposeful about all those areas.

Can't believe the suggestion to stop hearing services. Duh.

Let us know how things continue. If you have any great revelations at

's meetings, please share.

Oh -- what kind of dr talked about the processing disorders being common

with db and to test after age 9?

Michele W

[Guest guest]

Hi Michele,

I have read your post and will respond. I am in the middle of a big eval so want

to get past that so I can give Miss Aubrie due thought.

pam

[Guest guest]

,

While I am no expert, I think our kids are concrete learners due to

all the sensory info they miss. I know Makenna does better with

things she can see and look at or even manipulate. I have been

thinking about Aubrie and I thought of some ideas that may make her

class work more concrete. Just because she learns her spelling

words doesn't mean she automatically learned them out of context

(i.e. out of the area of a spelling test) applying the knowledge we

have is a higher level skill. I am not saying she can't do this but

she may need more help or examples of these learned things in other

aspects of her life. Makenna counts to fifteen because thats how

long she waits until she can take her puffer away from her mouth.

Now at school at calendar time she counts to fifteen and then she is

finished. She can't make the connection that there are more numbers

because at home we always go to fifteen. Very concrete and rote

skill for Makenna.

Take Aubrie's spelling words for example. She learns them for the

test and then can't apply them in her writing. Perhaps if you spend

some time looking for those words in the world around her, in things

she finds important. For example, she could look for those words in

her favorite books, magazines, in the newspaper. She could practice

making up sentences that contain that word and then writing them

out. I know this is more work, but she may need to see them in a

different context to make sense of it.

I am sure we are all in for challanges as our kids learn more

abstract things. Your team needs to find the key to Aubrie's

learning, we all learn differently. Hope some of this was useful.

Goodluck and I will keep you in my thoughts.

, mom to Makenna 4.11 years old.

>

> I need to share my newest concerns in an effort to think out loud

and get

> some understanding. Pam, I'll look forward to your thoughts.

>

>

>

> I've always been relieved to think that Aubrie has normal

cognitive ability.

> Sometimes, she is just smart as a whip. And I think she must be a

genius to

> have made such sense out of her world given her altered sensory

input and

> unusual experiences (compared to other kids). She is reading at

the top of

> her grade level. I have no clue how she manages it. And she gets

good

> grades on her weekly spelling tests by memorizing cuz she can't

accurately

> sound out words. Math has been the area that eludes her the

most. Even so,

> on her timed math fact tests, she has averaged 20 problems/minute

and keeps

> moving up the levels - maybe not as fast as her peers, but not

ridiculously

> slow either.

>

>

>

> Now - after the Christmas holiday - less than 2 weeks - she got a

D on a

> review spelling test. Meaning she didn't retain any of the words

she was

> able to memorize weekly. In her spontaneous writing, she never

spells

> correctly. It's as if spelling is for the test only and has no

meaning in

> real writing. She misspells words she knows - like " love " . She

is now

> getting only 11-12 problems/minute on her math tests. I'm keeping

records

> and watching to see how long it takes for her to recoup the skills

lost in 2

> weeks. Our district is big on the " regression and recoupment "

criteria for

> extended school year services even tho the law says that that

can't be the

> only criteria - another story.

>

>

>

> Anyway - last night she also had her first study guide for social

studies.

> The test is Thu so they must have been studying this stuff for

quite some

> time. The topics are continents, countries, landforms, bodies of

water,

> etc. She didn't have a clue about most of it. The only stuff she

remembers

> is some of the easily remembered rote stuff: national song, bird,

what's a

> huge body of salt water, etc. So I got out the globe for us to

look at

> these things more closely. Still, she's just not processing it

like other

> kids. I can't put my finger on it - I'm not trained to dx this

stuff. But

> I am a teacher and I can tell you she's not going about it " right " .

> Something's off. I am worried that we are in for serious

challenges as the

> topics get more difficult. I think part of it is attention - she

was full

> of off-the-wall questions about the globe itself - and this is one

we've had

> for ages so it's not just that it was new. Part of it appears to

me to be

> processing. I'm at a loss about what to do.

>

>

>

> And I'm avoiding the grief that comes with the realization that

she's not

> going to be able to learn everything like her peers. I don't want

to jump

> the gun on this, but I don't want to bury my head to protect my

feelings

> either.

>

>

>

> Also-In karate, they began working with numchucks. One move is a

figure 8 -

> sideways. You know, chucks are the sticks (theirs are soft)

attached by

> string or chain that you swing. So she's supposed to hold on to

one and the

> other swings in a sideways 8 in front of her. She just can't make

her arm

> do it. Even when we do it together, she is going against me.

It's like she

> just can't do the upward movement - she wants to do 2 regular

circles. We

> tried all kinds of ways to practice, and she's not getting it.

I'm getting

> frustrated and worry that I will lose patience to help her.

>

>

>

> Michele W

> Aubrie's mom 8 yrs

>

>

>

>

[Guest guest]

Michele,

Dr. Jack Morse....psychologist I believe...he worked closely with Dr.

Kaplan...He has 40 years of experience evaluating children who are deaf/blind.

With all his experience he was able to list possibilities...He believes that

processing disorders are common however they have difficulty testing before

9....

The director stopped me in the parking lot and explained that eliminating

hearing impaired services was never going to happen...she would like the staff

to be well versed in deaf issues...what a miracle can you believe that...

We will always have to stay on top of these things...

It is very easy for those who are not well versed in dual sensory impairment

to lump everything in the learning disability....I have asked to explore a

possibility of lack of input rather that inability to accomplish task...

and I recently attend a conference for deaf/blindness and we have some

great handouts...IEP Quality indicators for Students with Deaf/blindness....we

will be incorporating some of these suggestions that may help alleviate

difficulties.The site is www.tsbvi.edu

It is loaded with information...that handout is available on line.

Good luck

Ellen Mom to .8

[Guest guest]

i havent seen you in here in ages how are you happy new year to you am going

to have a bath now talk later

>

> Michele,

> Dr. Jack Morse....psychologist I believe...he worked closely with Dr.

> Kaplan...He has 40 years of experience evaluating children who are

> deaf/blind. With all his experience he was able to list possibilities...He

> believes that processing disorders are common however they have difficulty

> testing before 9....

> The director stopped me in the parking lot and explained that eliminating

> hearing impaired services was never going to happen...she would like the

> staff to be well versed in deaf issues...what a miracle can you believe

> that...

> We will always have to stay on top of these things...

> It is very easy for those who are not well versed in dual sensory

> impairment to lump everything in the learning disability....I have asked to

> explore a possibility of lack of input rather that inability to accomplish

> task...

>

> and I recently attend a conference for deaf/blindness and we have

> some great handouts...IEP Quality indicators for Students with

> Deaf/blindness....we will be incorporating some of these suggestions that

> may help alleviate difficulties.The site is www.tsbvi.edu

> It is loaded with information...that handout is available on line.

> Good luck

> Ellen Mom to .8

>

>

>

>

[Guest guest]

Thanks in advance, Pam-

Michele

RE: newest concerns - IQ

Hi Michele,

I have read your post and will respond. I am in the middle of a big eval so

want to get past that so I can give Miss Aubrie due thought.

pam

[Guest guest]

Thanks, I'll visit that site and see what I come up with. I'll also share

my concerns with our db specialist. Duh. I'd forgotten all about keeping

her in the loop!

Michele

[Guest guest]

-

This is exactly the kind of thing I will need Aubrie's team to work on.

Once we figure out what kinds of experiences and tasks she needs in order to

learn, they will need to get them done at school. That leads me to

confusion about where for her to best learn -- in the regular classroom or

in a special ed room. In my heart, I believe completely in inclusion. I

want her to grow up with her peers so she will be able to live with them as

an adult. She needs the social learning that she gets from being with them.

Altho that, too, is another area of concern. But if I was looking at only

learning the academic content of school -- I'd think she'd be best off with

a 1:1 tutor all day. If the typical class presentation by the teacher is

not in a method that suits Aubrie, then she doesn't have time to sit thru

it. She needs the material presented in the way she needs it the first time

and every time. Right now, she sits thru the class presentation and then

the aide reteaches or tutors her as needed thru her assignments. Sometimes

the aide preteaches before the class lesson. In either case, it is taking

twice as long for Aubrie to get the lesson. Is there any way for her to get

it more efficiently? I don't know. Maybe she needs to hear and see things

more times repeatedly.

I'm just babbling and thinking out loud. If anything here has made sense to

someone, help me out and clarify my own thoughts for me!

Michele W

Aubrie's mom 8 yrs

[Guest guest]

hmmmmmmmm sometimes i put my lack of being able to spell to my teacher

wonderful woman but she couldnt spell this was in primary pluss hosptial

plus loads of other things to concentrate on other than wheter i can spell

or add up well whe we did decide things it was mostly to the best oh well

hugs ellen

>

> -

> This is exactly the kind of thing I will need Aubrie's team to work on.

> Once we figure out what kinds of experiences and tasks she needs in order

> to

> learn, they will need to get them done at school. That leads me to

> confusion about where for her to best learn -- in the regular classroom or

> in a special ed room. In my heart, I believe completely in inclusion. I

> want her to grow up with her peers so she will be able to live with them

> as

> an adult. She needs the social learning that she gets from being with

> them.

> Altho that, too, is another area of concern. But if I was looking at only

> learning the academic content of school -- I'd think she'd be best off

> with

> a 1:1 tutor all day. If the typical class presentation by the teacher is

> not in a method that suits Aubrie, then she doesn't have time to sit thru

> it. She needs the material presented in the way she needs it the first

> time

> and every time. Right now, she sits thru the class presentation and then

> the aide reteaches or tutors her as needed thru her

> assignments. Sometimes

> the aide preteaches before the class lesson. In either case, it is taking

> twice as long for Aubrie to get the lesson. Is there any way for her to

> get

> it more efficiently? I don't know. Maybe she needs to hear and see

> things

> more times repeatedly.

>

> I'm just babbling and thinking out loud. If anything here has made sense

> to

> someone, help me out and clarify my own thoughts for me!

>

> Michele W

> Aubrie's mom 8 yrs

>

>

>

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> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

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> CHARGE Syndrome Conference, July, 2007. Information will be available at

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>

[Guest guest]

Ellen,

What is difficult is " processing disorders " are typically excluded from LD

determination, because it is not specifically a math, language, or reading

disability - how LD is narrowly classified. In some respects and

Aubrie may come out with better resources than other kids because of this.

Processing impacts ALL learning. Add that on top of trying to keep up with

the pace of the class, the new language coming in, the noises or

conversations around the classroom, visual info on the board and so on, and

that a lot of our kids really do need 15minutes for new information to be

noodled around before it sinks in. Classes move much faster than that.

You may see " off the wall " questions often indicating they are not hearing

or processing all of the information, you may see withdrawl which teachers

can say is being lazy or unmotivated, you can see increased movement and so

on, which can often be from stress, but is labeled as " behavior " .

Because of the combined loss, I hope your schools remain able to understand

the enormity of what these children must do to learn all that they do, and

be willing to not judge what they see, but to ask why and then fill in the

gaps for your child.

Kim

Ps - processing difficulties often show up around 2nd or 3rd grade in

otherwise " typical " kids.

> Also when finally got his triennial review ...the doctor suggested that

> children who are deaf/blind will more than likely have a processing disorder.

> However it can not be tested accurately until the child is 9 and at that it

> may not be clear.. We are aware and plan on testing in September.

> Many would have been eager to jump on the LD bandwagon instead of

> understanding that most if not all can be attributed to dual sensory

> impairment.

[Guest guest]

Michele,

My instinct from all the pain we experienced with Tyler and was the very

worst 3rd grade is to have complete neuropsychological testing done by this

outside person. Have her help write out how Aubrie processes information,

not so she can get a label, but so you can get ideas on what is hard and

what might be done to help with that area.

For example on the WISC-III there are numerous subtests. Typically the

school will look at the verbal, performance, and full scale IQ and then do

tests to see if the reading, math, or writing skills as shown by other tests

are in alignment with that. (Here is hoping with change to IDEA that this

criteria is no longer used.) The problem is by looking at the WISC-III

subgroups there are numerous clues about where difficulties might be. There

are books with specific ideas on interventions when kids have trouble on any

of these subtests. There are also further tests to do within that subgroup

to determine the likely cause, because it may be due to 2 or 3 different

causes. School psychologists do not do this level of testing. Your

neuropsych could! She should be able to show if it is due to lack of

hearing, vision, processing, motor or whatever.

When I was a young and trusting mom with the public schools I believed the

schools when they said he did not have a learning disability - now when I

read the test it actually did show LD in reading and writing, but the

psychologist chose to say it was only ADD. Also looking at that initial

test it showed the huge discrepancy in his function - I look back and think

if we had targeted the 2 weak areas, would we have been able to remediate

the disability instead of the years of schools blaming him as lazy and

motivated, and finally when recognizing the disabilities providing

accommodations, but no remediation.

I give you Tyler's scores as an example so you can see the impact, knowing

of course that combined vision and hearing loss is going to skew your

results and is not useful when determining her IQ as a whole.

Mean is 10, the standard deviation is 3, so 13 would be 1 SD above the mean,

and 7 would be 1 SD below the mean and so on.

Verbal Performance

Information - 14 Picture Completion - 11

Similarities - 15 Coding - 3

Arithmetic - 15 Picture Arrangement - 14

Vocabulary - 12 Block Design - 13

Comprehension - 11 Object Assembly - 8

(Digit span) - (8)

As a teacher, look at these scores. Where is the difficulty? His combined

scores gave him a full scale IQ of 111 which is above average no need to

intervene.

But if you look at the subtests it should be apparent that he is in no way

going to be capable of performing at an above average level across the

board.

I later learned that digit span (1 SD below the mean) is an indicator of

short term memory

Coding (2 SD below the mean) is about visual perceptual mechanics and

decoding of visual symbols, and object assembly (1 SD below) is about visual

analyses

I look at the other tests and the indicators are clearly there every time

that these are the areas he needed help with.

This is the one area of life that I have not healed from. The clues were

there in 2nd grade, and 3rd grade was a year that I know changed his path

forever, making life much harder for him than it needed to be. Generally my

philosophy is your path is what makes you who you are, and I would not go

back to change things if I could, even dying. But with this I would

love to see what his path would have been if I had only known how to

understand the test myself, if I would have fought the determination when I

knew in my heart it was wrong; found an advocate, had outside testing, and

then actively done something that would have helped fill in these gaps. Any

remediation Tyler has had has come from us doing the learning and teaching

it to him ourselves and I am not even a teacher, but I had to learn it for

him. I simply wish my learning curve had not taken so long. And it makes

me cry to this day, thinking that every day there are still families going

through the same thing.

I know Ellen has looked this up before but after 9th grade, I did take Tyler

to a place that did a 30 minute test of him. In that test it showed

Processing speed of 4.4 years below age

Working memory of 2.6 years below age

Visual processing of 1.8 years above age

Word attack of 6.7 years below age

Auditory analysis of 0.2 years below (at) age

Logic and reasoning of 2.8 years above age

The difference between his high and his low is 9.5 years in a child who was

15.

With this info was the first time, I was able to truly work on what he

needed rather than " tutoring " which we had taken him to in the past.

Philosophy is PACE - Processing and Cognitive Enhancement

The home version we did is called Brain Skills

Obviously it is much more complex for Aubrie and due to their vision

and hearing loss, but Tyler's story is what processing disorders look like

without that factor. I think it is useful to know if they have processing

trouble too, because maybe you can fill in some gaps.

And I would just like to say that there are times when I wish I had not had

so many opportunities for learning in our lives. Now there is suspicion

that Tyler actually has childhood bipolar and not inattentive ADD and I am

tired!

Kim

http://www.brainskills.com

BrainSkills - A Home program for children who struggle with learning, can't

stay on task, or who work very slowly, with ADD, dyslexia, Executive

Dysfunction, or other learning disabilities. " BrainSkills involves fun

mental exercises that are really mind games. As capabilities improve, and

higher levels of skill are attainable, multiple skills are required. Some of

the procedures involve accuracy. Others involve working against the clock.

Concentration is a must. " Brainskills is a big-time challenge with

significant benefits for learning. The student and trainer must both commit

to at least 6 hours per week for 12 weeks. BrainSkills training requires

one-on-one intensity, so both student and trainer must make the same

commitment.

In looking up BrainSkills for you I just came across a great web site on

executive dysfunction and the impact on learning - does put it in

perspective for CHARGE.

http://www.learningabledkids.com/learning_disability_LD/executive_functionin

g.htm (will need to type this in one line on your browser)

Remediation for Executive Functioning or Executive Dysfunction issues is

relatively difficult, but brain-based learning and cognitive enhancement

programs can increase skills such as auditory processing, visual

discrimination, processing speed, phonological awareness, planning,

sequencing, attention to detail, etc. By increasing a child's functioning in

any cognitive skill area, his overall level of academic achievement can be

enhanced. These programs are often overlooked in when developing an

educational program, yet the gains made through these programs can create

significant gains across all academic subjects. Some programs require more

parent involvement, and some can be used by the child without significant

adult assistance.

Executive functioning (EF), or Executive Dysfunction, is defined as " the

ability to maintain an appropriate problem solving set for attainment of a

future goal and that this ability includes the more specific skills of

inhibition, planning, and mental representation. Behaviors that can be

observed (or reported) in the clinical setting that might indicate an EF

deficit that should be assessed by standardized testing include, but are not

limited to poor organization, planning, or strategy use; concrete thinking;

lack of inhibition; difficulty grasping cause and effect; inability to delay

gratification; difficulty following multistep directions; difficulty

changing strategies or thinking of things in a different way (i.e.,

perseveration); poor judgment; and inability to apply knowledge to new

situations. " (CDC)

Children with Executive Dysfunction have difficulty reading social cues and

may feel overwhelmed in large group situations. EF can cause pervasive

problems as this disability does not affect only one area of learning like

Dyslexia, Dysgraphia, or Dyscalculia. Every subject can be affected by

Executive Dysfunction issues, but particularly any academic area that

requires sequential processing.

> We have not been seeing the new neuropsych on a regular basis but I think

> I'll contact her too and see how she can help gain understanding. So far,

> she's been looking at the OCDish stuff, aspergers-ish stuff, and attention.

> Since those aren't critical for us right now and our lives are filled with

> other things, we've been haphazard in our visits. Perhaps it's time to get

> purposeful about all those areas.

[Guest guest]

Michele,

I know this is more time for the teacher, but it seems to me a good start

would be figuring out fewer concepts that Aubrie must learn for each lesson.

What are the main points - I doubt it is memorizing dates. The teacher

would have to determine this before teaching the unit and it should be based

on " what would have meaning for Aubrie " . Then the new vocabulary would need

to be given to the aide to Pre-teach. After the teacher does the lesson,

the Aubrie and the aid would work on what Aubrie needs to know.

The problem is of course that she then loses time on other activities, so it

has to be determined in all areas, what has meaning for Aubrie, what is most

likely going to help her move forward, and what does she NEED to know and

understand.

Kim

> -

> This is exactly the kind of thing I will need Aubrie's team to work on.

> Once we figure out what kinds of experiences and tasks she needs in order to

> learn, they will need to get them done at school. That leads me to

> confusion about where for her to best learn -- in the regular classroom or

> in a special ed room. In my heart, I believe completely in inclusion. I

> want her to grow up with her peers so she will be able to live with them as

> an adult. She needs the social learning that she gets from being with them.

> Altho that, too, is another area of concern. But if I was looking at only

> learning the academic content of school -- I'd think she'd be best off with

> a 1:1 tutor all day. If the typical class presentation by the teacher is

> not in a method that suits Aubrie, then she doesn't have time to sit thru

> it. She needs the material presented in the way she needs it the first time

> and every time. Right now, she sits thru the class presentation and then

> the aide reteaches or tutors her as needed thru her assignments. Sometimes

> the aide preteaches before the class lesson. In either case, it is taking

> twice as long for Aubrie to get the lesson. Is there any way for her to get

> it more efficiently? I don't know. Maybe she needs to hear and see things

> more times repeatedly.

>

> I'm just babbling and thinking out loud. If anything here has made sense to

> someone, help me out and clarify my own thoughts for me!

>

> Michele W

> Aubrie's mom 8 yrs

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim-

Wow. That's a lot to digest, but very helpful! I'm flagging all the

relevant posts to print, review, and share with her teacher and team.

Michele W

Aubrie's mom

[Guest guest]

Kim-

This is something I've suggested to a small degree since K. At that time, I

can't remember what we were adding to the day, but I made it clear that

Aubrie didn't have time for any non-productive tasks. Every moment needed

to be important to her specifically. With a 1:1 aide, there's not reason

for any wasted time. And wasted time doesn't just mean doing nothing, it

means doing anything that is not productive for her. Now, how to get that

point across more concretely and how to get it done... Again, I will flag,

review, and print your post to share.

I'm getting aggravated cuz I know this is being done around the country for

lots of kids. Why does it feel like we're inventing some crazy new concept?

Michele W

Re: Re: newest concerns - IQ

Michele,

I know this is more time for the teacher, but it seems to me a good start

would be figuring out fewer concepts that Aubrie must learn for each lesson.

[Guest guest]

Because this is what should happen in a text book world, but in life people

just get too busy. Kim

> Kim-

> This is something I've suggested to a small degree since K. At that time, I

> can't remember what we were adding to the day, but I made it clear that

> Aubrie didn't have time for any non-productive tasks. Every moment needed

> to be important to her specifically. With a 1:1 aide, there's not reason

> for any wasted time. And wasted time doesn't just mean doing nothing, it

> means doing anything that is not productive for her. Now, how to get that

> point across more concretely and how to get it done... Again, I will flag,

> review, and print your post to share.

>

> I'm getting aggravated cuz I know this is being done around the country for

> lots of kids. Why does it feel like we're inventing some crazy new concept?

>

> Michele W

>

> Re: Re: newest concerns - IQ

>

> Michele,

>

> I know this is more time for the teacher, but it seems to me a good start

> would be figuring out fewer concepts that Aubrie must learn for each lesson.

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Michele, I haven't written up to this point cause I've been swamped and

wanted to think on it too. Tim has had trouble with math --basic addition

and subtraction facts for over a year--stills struggles with them at

times...finally it clicked for the most part. it's the ol charge thing in

theor own time I guess.

the spelling isn't easy either, but it does help him to sign the letters as

he says them. and they don't use a " normal " program it's based for deaf

kids. fom instance his spelling words last week were sign, brother,

hospital, fast slow, and a few others I can't remember--they took them out

of his folder. but they go along with the reading program. so, not only is

he seeing them in spelling, but in reading too and they have then for about

two weeks before the test.

he does great in social studies and science--loves them. although he cannot

read it all by himself. he KNOWS the information. again it's ususally a 2

week lesson.

he does have the 1:1 aide a small class 11 and two other aides for other

kids and the teacher. they have the same teacher etc for 2 years. so, I

think in tim's case this is good--they know his quirks and he feels

comfortable too.

not that he has problems getting to know people.

now, homework is sometimes another story. and becausr he's getting

older--it is becoming more. but, my fall back is--do it or not --if not you

get lunch detention with maglio--his teacher. but, he rarley does it

independantly, and most times I write for him. we wouldn't be done until

midnight ohterwise.

good luck with your search with Aubrie--hopefully, you will find a happy

medium. I guess with Tim he has come so much further than we expected we

just plug along and hope we are doing the right thing --I truly believe we

are. he will never have good writing --the keyboard will be his lifesaver

and he is doing that while the others work on cursive. reading will

probably always be a struggle, and in order to truly learn well he needs

repition, visual and auditory aides. but the visual are very important. he

will never be a rhodes scholar, but I really believe in his own time he will

" get it " all. just not the way you or I would and most definitely at his

own CHARGE pace.

well, I'm rambling and not sure any of this makes sense--I am getting sick

again. or still.

Re: Re: newest concerns - IQ

>

> Michele,

>

> I know this is more time for the teacher, but it seems to me a good start

> would be figuring out fewer concepts that Aubrie must learn for each

> lesson.

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

-

I'm sorry to hear you're not feeling better yet! I hope you can get rest

and get better. No rest today with the kids home, right?

Thanks for giving me the run-down on how things work for Tim. Comparing

them all really does help.

Michele W

[Guest guest]

yes, they are home but all in pjs watching movies or video games--hate

letting them " waste the day away " , but I am wiped so not forcing them to do

educational things etc. today.

RE: Re: newest concerns - IQ

> -

> I'm sorry to hear you're not feeling better yet! I hope you can get rest

> and get better. No rest today with the kids home, right?

>

> Thanks for giving me the run-down on how things work for Tim. Comparing

> them all really does help.

>

> Michele W

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Martha-

Don't feel guilty for a day wasted. Everyone needs down time -- even kids.

A day in pjs may be just what they need to be rejuvenated and ready to face

the rest of the winter! Enjoy! There's nothing so luxurious as lounging in

pjs just hanging out together.

Michele

[Guest guest]

Michele,

I know that investing in computer software can be expensive....If you would

like I can send you out some of the programs that is tired of....

Almost every season and I do a clean out...books computer software...we

usually donate locally...We would be happy to share with you....I can go through

them and give you a list ...you can tell me what you want

Ellen mom to 8

[Guest guest]

Gosh- that sounds awesome! We do the same thing-- go thru the videos etc

and give locally. You can email me the info privately and I'll let Aubrie

choose. She could send a gift card to use to buy himself a new game to

take the place of all the old ones he's letting go of.

Michele W

momonamission@...