Re: Auditory Processing Disorder - Help?!

[Guest guest]

I learned in this group that you have to be careful what tests are used and who

does the testing because if you can't express yourself it doesn't mean you don't

know the answer. I would get another opinion. Kate

>

> This is a bit O/T since it's related to my daughter, who doesn't have apraxia,

but hopefully someone here knows something about this...

>

> My daughter was diagnosed with Language Processing Disorder. The speech

therapist tested with the same test (TAPS-3) an audiologist would use, but

" auditory " processing can't be done until age 7, by an audiologist. She scored

pretty low - auditory memory (9%), aud comprehension and sentence memory(both

16%) word/ number memory (both 25%). She did better in phono blending (84%),

Phono segmentation (50%), and word discrimination (95%). I never expected her to

test so poorly, but I knew as I read it that it's accurate.

>

> She'll be in speech therapy until her sessions run out (Aug/ Sept?), and

they're doing some auditory stuff there. The therapist recommended " the

listening program " , which runs about $400. Is that something for home or

therapy? (or both?) Has anyone used it? Does it work? What else can I do? She

has an IEP with a a teacher's aide, front and center seating in the class, and

homework written down every night.

>

> I'm just confused and don't know where to turn. Honestly, I'm throwing myself

a pity party also, at least until I really feel informed and accept this. Right

now, I feel like it's a 'life sentence' for her. I'm sure that (just like

apraxia) with training she will be fine in the long run.

>

> Any info you can give me, especially on " the listening program " would be

wonderful. Thanks in advance!!

>

>

>

[Guest guest]

in short Kate has provided wise advice. I'm taking it that your child

is not yet 7 years old. I have a few questions prior to answering you:

How old is your child and what grade/placement? (she's around 6 right?)

What type of professional tested your child for this diagnosis since she already

has the diagnosis of trisomy X?

Was it school or private testing?

Is your daughter's expressive ability normal now?

Your child has a diagnosis (as I searched the archives) and in my opinion if

this new diagnosis on top of the one she already has is just the SLPs opinion

I'd seek not only another SLP to do testing -but also find a private

audiologist and get an opinion on the testing and results already done.

When it comes to CAPD I have a bit of knowledge in this area as my older son

Dakota was diagnosed by numerous professionals as " either ADHD or CAPD " It is

hard to tell the difference at times- and it takes experts in this area. And

again because your daughter has a genetic impairment which from what I read on

the Mayo Clinic's website " If your daughter has triple X syndrome, know that

many cases result in no symptoms or only mild symptoms. In other cases, symptoms

may be more pronounced — possibly including developmental delays. "

Sounds to me that your daughter may need more time to get up to speed, and

support. Having some SLP from around the corner slap another diagnosis on your

daughter -when the symptoms can be from her primary diagnosis -can cause more

harm than good. And yes we know that it's difficult to accurately test the

receptive/cognitive ability of a verbal disabled individual anyway..but add to

that the SLP from what you wrote gave your daughter a test that she should not

have even had yet....it all just smells to me! And not good.

Too many times we learn in this group that too many of our speech impaired

children are misdiagnosed as you probably know as a long time member.

I read in the archives that " My son has apraxia, my daughter's delays are

genetic " and " My daughter was in Extended School Year last year for a speech

delay " and longest

" Daughter dx'ed with trisomy x today...

I know this is a bit off topic for the 'apraxia' board, but I need to vent...

My son (3) has apraxia and SPD. I knew something was up with my daughter (5 next

week) from early on - issues include speech delays, hypotonia, etc, as well as

being a motor learner (can't just watch and pick up new tricks without help),

and more recently, mirror imaging her writing. We recently learned that she has

a lot of problems with visual tracking, so I expected either dyslexia or visual

processing disorder.

Needless to say, I was a bit surprised when Trisomy X came up as the answer. I'm

not sure what to think right now. Obviously, she is who she always was... The

only difference is I have a name to go with the issues I knew about.

On another note, the neuro also told me she tested low for Carnitine - it would

explain some of the muscle issues. They're re-testing since an amino acid came

low (done as urine - will be re-done as blood), but they will most likely start

Carnitine supplements afterwards. At least I've seen that word around the board

lately - it'll give me something to research...

I'm hoping that something good will come of this, although I don't know what or

how... Her school SLP was raving about how mature she sounds and how well she

speaks now (although she still has halted speech), and I was worried that they'd

stop services when she enters kindergarten. Either way, I called the school

today (closed - spring break) and left a message since my transition review is

at the end of the month. No use waiting until I get there and have to replan the

meeting based on new info, right? And that's where the bright side ends...

Well, thanks to everyone who listened to me carry on. If there's any advice

anyone can give, please feel free to pass it on. "

~~~~~~~~~~~~

Anyway -just wanted to put your daughter's background out there and get

clarification from you about diagnosis and where she is today. I'm sure as a

group we can help. Also let me know what state you are in. Perhaps we can

suggest second opinions!

Oh and PS -the listening program many of us have used a version of and it's

worth exploring but you want to make sure you have the appropriate diagnosis and

an SLP to work with that knows which CDs are best for your child. There are a

few ways to do this. Jury is still out on the SLP your daughter just worked

with that's for sure so if she is the one suggesting it I would halt until you

secure a second opinion for your daughter.

=====

[Guest guest]

,

I have a few questions & will email you off list.

Warmest wishes,

Barbara , M.S., CCC-SLP

www.helpmespeak.com

410-442-9791

Ask me about NutriiVeda!

On Jun 10, 2010, at 11:46 PM, " mykitkate " <mykitkate@...> wrote:

> I learned in this group that you have to be careful what tests are used and

who does the testing because if you can't express yourself it doesn't mean you

don't know the answer. I would get another opinion. Kate

>

>

> >

> > This is a bit O/T since it's related to my daughter, who doesn't have

apraxia, but hopefully someone here knows something about this...

> >

> > My daughter was diagnosed with Language Processing Disorder. The speech

therapist tested with the same test (TAPS-3) an audiologist would use, but

" auditory " processing can't be done until age 7, by an audiologist. She scored

pretty low - auditory memory (9%), aud comprehension and sentence memory(both

16%) word/ number memory (both 25%). She did better in phono blending (84%),

Phono segmentation (50%), and word discrimination (95%). I never expected her to

test so poorly, but I knew as I read it that it's accurate.

> >

> > She'll be in speech therapy until her sessions run out (Aug/ Sept?), and

they're doing some auditory stuff there. The therapist recommended " the

listening program " , which runs about $400. Is that something for home or

therapy? (or both?) Has anyone used it? Does it work? What else can I do? She

has an IEP with a a teacher's aide, front and center seating in the class, and

homework written down every night.

> >

> > I'm just confused and don't know where to turn. Honestly, I'm throwing

myself a pity party also, at least until I really feel informed and accept this.

Right now, I feel like it's a 'life sentence' for her. I'm sure that (just like

apraxia) with training she will be fine in the long run.

> >

> > Any info you can give me, especially on " the listening program " would be

wonderful. Thanks in advance!!

> >

> >

> >

>

>

[Guest guest]

Thanks, . I'll try to answer it all.

My daughter is 6, and finishing Kindergarten. The test was done by a private

speech therapist who has been working with her for over a year. She expresses

herself well enough to be understood by anyone.

Her big problem now seems to be following directions. Her teacher said she pays

attention, but needs things both repeated and broken down frequently.

Another problem is grammar - if you ask her " today I eat the banana, yesterday I

______ the banana " , she'll think and say " ate " . If you give her a choice

" yesterday I (ate, eat, eated), she tends to automatically pick the last one. I

don't think it's being lazy - she doesn't realize until you repeat the sentence

back to her.

She had an audiology eval at approx 3 yrs old (pre-req for speech eval), and

basic hearing tests since, and both came back normal. The SLP recommended taking

her for another audiology eval, but warned me that they don't test for auditory

processing until age 7.

You are right that Trisomy X varies in it's symptoms. She has most of the signs,

both physical and developmental delays. I've read that a small study (not sure

if that's 5 kids or 50) done by Dr. Lucker shows that the girls all had aud.

processing issues. That doesn't make me automatically assume she does, but I'm

open to the possibility.

You mentioned that it's hard to test a verbal disabled individual, but I believe

that my daughter's speech can be understood by a stranger. (I purposely eval my

apraxic son with therapists that don't know his speech pattern and cannot

understand him, but my daughter does not have this problem). In the past, she

left off " little " words (and, the, to, etc), and paused a lot in speech - almost

every other word. With continued therapy, these and her grammar are improving.

I do trust the therapist who tested her to give me an honest answer based on the

amount of time they've worked together. If I brought my daughter to a stranger

and she became shy or silly I would feel differently about the results. 2

therapists in the practice have worked with my daughter, and both have mentioned

the red flags to me long before the test. It is the other therapist who

mentioned the listening program to me. She has 30+ yrs experience as an SLP.

Feel free to ask any other questions. Hope I answered all of them so far.

>

> in short Kate has provided wise advice. I'm taking it that your

child is not yet 7 years old. I have a few questions prior to answering you:

>

> How old is your child and what grade/placement? (she's around 6 right?)

> What type of professional tested your child for this diagnosis since she

already has the diagnosis of trisomy X?

> Was it school or private testing?

> Is your daughter's expressive ability normal now?

>

> Your child has a diagnosis (as I searched the archives) and in my opinion if

this new diagnosis on top of the one she already has is just the SLPs opinion

I'd seek not only another SLP to do testing -but also find a private

audiologist and get an opinion on the testing and results already done.

>

> When it comes to CAPD I have a bit of knowledge in this area as my older son

Dakota was diagnosed by numerous professionals as " either ADHD or CAPD " It is

hard to tell the difference at times- and it takes experts in this area. And

again because your daughter has a genetic impairment which from what I read on

the Mayo Clinic's website " If your daughter has triple X syndrome, know that

many cases result in no symptoms or only mild symptoms. In other cases, symptoms

may be more pronounced — possibly including developmental delays. "

>

> Sounds to me that your daughter may need more time to get up to speed, and

support. Having some SLP from around the corner slap another diagnosis on your

daughter -when the symptoms can be from her primary diagnosis -can cause more

harm than good. And yes we know that it's difficult to accurately test the

receptive/cognitive ability of a verbal disabled individual anyway..but add to

that the SLP from what you wrote gave your daughter a test that she should not

have even had yet....it all just smells to me! And not good.

>

> Too many times we learn in this group that too many of our speech impaired

children are misdiagnosed as you probably know as a long time member.

>

> I read in the archives that " My son has apraxia, my daughter's delays are

genetic " and " My daughter was in Extended School Year last year for a speech

delay " and longest

>

> " Daughter dx'ed with trisomy x today...

>

> I know this is a bit off topic for the 'apraxia' board, but I need to vent...

>

> My son (3) has apraxia and SPD. I knew something was up with my daughter (5

next

> week) from early on - issues include speech delays, hypotonia, etc, as well as

> being a motor learner (can't just watch and pick up new tricks without help),

> and more recently, mirror imaging her writing. We recently learned that she

has

> a lot of problems with visual tracking, so I expected either dyslexia or

visual

> processing disorder.

>

> Needless to say, I was a bit surprised when Trisomy X came up as the answer.

I'm

> not sure what to think right now. Obviously, she is who she always was... The

> only difference is I have a name to go with the issues I knew about.

>

> On another note, the neuro also told me she tested low for Carnitine - it

would

> explain some of the muscle issues. They're re-testing since an amino acid came

> low (done as urine - will be re-done as blood), but they will most likely

start

> Carnitine supplements afterwards. At least I've seen that word around the

board

> lately - it'll give me something to research...

>

> I'm hoping that something good will come of this, although I don't know what

or

> how... Her school SLP was raving about how mature she sounds and how well she

> speaks now (although she still has halted speech), and I was worried that

they'd

> stop services when she enters kindergarten. Either way, I called the school

> today (closed - spring break) and left a message since my transition review is

> at the end of the month. No use waiting until I get there and have to replan

the

> meeting based on new info, right? And that's where the bright side ends...

>

> Well, thanks to everyone who listened to me carry on. If there's any advice

> anyone can give, please feel free to pass it on. "

>

> ~~~~~~~~~~~~

>

> Anyway -just wanted to put your daughter's background out there and get

clarification from you about diagnosis and where she is today. I'm sure as a

group we can help. Also let me know what state you are in. Perhaps we can

suggest second opinions!

>

> Oh and PS -the listening program many of us have used a version of and it's

worth exploring but you want to make sure you have the appropriate diagnosis and

an SLP to work with that knows which CDs are best for your child. There are a

few ways to do this. Jury is still out on the SLP your daughter just worked

with that's for sure so if she is the one suggesting it I would halt until you

secure a second opinion for your daughter.

>

> =====

>

[Guest guest]

About following instruction, is there always an issue with following commands

with your daughter? Do you see it too? If it's not 100 percent positive an

issue all the time the danger is that your daughter is already pegged by this

kindergarten teacher who clearly believes your child doesn't understand multi

part commands. To me -I'd seek an evaluation immediately from at least one if

not two neuroMDs who can appropriately test my child and provide written reports

on what my child is or is not capable of understanding to help me advocate.

I again would have made sure the testing was appropriate and if it ended up as

it always did in my son's case that the school's view of my child was wrong -I

would have put the blame on the inappropriate placement and resolved the

situation and advocated on my son's behalf -to bring a voice for those that can

not yet speak for themselves. That does not mean my son when he was 6 was

unable to speak -but at your daughter's age I was still strongly advocating.

I didn't need out of district placement for kindergarten on -but I did seek and

receive out of district placement for preschool and Tanner then has been able to

be mainstreamed since kindergarten but as I wrote to another parent here the

fight against the ignorance in the language issues when there are developmental

lags goes on once speech comes in.

What you are writing is for sure strong possibility of that as well. What is

going on in the kindergarten class could be the first signs of frustration from

your daughter which in a number of cases in this group led to secondary psych

issues on top of the verbal impairment.

what I'm trying to say is that in my opinion what is not being taken

into consideration is that if there is any type of delay in speech,

developmental or impairment -we have seen in this group that it can create

developmental lags in language where the child is speaking -but in the language

area is able to " catch up " by making over a years gain in a years time -so these

lags should not be provided with a diagnosis that puts further stigma on the

child when it may instead be linked to a primary issue.

If you visit the talking page http://www.debtsmart.com/talk you'll see I can say

the same about my son Tanner being understandable at around your child's age

-but yes we had issues in language -but again we learned it was a developmental

one.

My son had the same issues as your daughter at 6 of mixing up tense but

fortunately for both him the professionals that surrounded him privately at

least as well as me advocated against any further diagnosis to explain this.

Today at 14 (just turned 14 June 11!!!) Tanner speaks fine and for years now has

not mixed up syntax or tenses. He just took a bit more time in this area. Time

is something other kids had while he was still nonverbal -that's what I'm trying

to say.

My alliance always was number one with my children. People can be nice, people

can be friends, people can be well educated and respected and people can make

mistakes and be 100 percent wrong and that includes their opinion (evaluation)

of my child.

I suggest all go back and read the latest update from Tina from Columbus which I

am once again going to post below as she says she believed in her son " All the

while being told repeatly he couldn't, wouldn't from the school and board.It was

an impossible dream and my expectations were to high ect. " (thank you Tina for

sharing this entire update!!)

So for those that don't want to find a different professional - at least seek

second opinions. And please don't look at a second opinion as a

" stranger " That " stranger " can have more of a clue how to help your child that

someone that works poorly with your child for years.

And I stand by what I said that a speech delay or disorder can create

developmental lags that can cause the child to be misdiagnosed and or

misclassified as having language or receptive issues, and that dominoes into

frustration and low self esteem issues which are all secondary. All I'm saying

is if that's the case -there is underlying language issues that are not

developmental lags but impairments as well -seek second opinions here- because

again it all can be stemming from the original diagnosis just presenting in a

different way or something they are still dealing with. Speech has little to do

with it once they are talking. A two or three year old can be non stop talking

and mixing up syntax and tense but nobody is going to assume the child doesn't

" get it " That child unlike yours (if your child was a late talker) had years of

practice that most of our children are shy of. That's all I'm saying -sometimes

it takes a bit more time and a little bit of faith.

Wanted to Share

As I look back over the years and recall in vivid detail the struggles and

challenges that my son faced with his global apraxia and my consant advocating

for an approperate education,iep,accommodations and getting his diagnosed

recongized by the school,teachers,and school board. All the while being told

repeatly he couldn't, wouldn't from the school and board.It was an impossible

dream and my expectations were to high ect.

I chose to follow my heart , have some faith and beleived with everything he

could do anything nothing was impossible I watched his painfully slow progress

in speaking ect So I knew he could do anything.

I am proud to tell you in a few short weeks my son will graduate from

highschool and will be attending college this fall. He is taking a 3 year

computer programer analyst program. Someone asked me if I would do it again the

answer was simple in a heartbeat. This is my reward and thanks for being just a

mom to an amazing son.

Thanks from my heart and all of you for the support over the years you

were always there when I needed it. Couldn't have done it with out you all. Tina

Columbus

=====

[Guest guest]

I've always found in homework or day-to-day activities that if there's a

following multi-step directions problem. If you tell her color/ cut/ paste, she

quickly gets overwhelmed, but if you break it down she's fine. The teacher has

reported the same.

Her teacher has been great - breaking things down in class, and talking to me

about her. She offered to talk with the 1st grade teacher so that they

understand she needs assistance instead of rushing through and letting her fall

behind. Alena is in a regular ed class. The IEP requires a teacher's assistant

next year (not 1-on-1), front/ center seating and all assignments written to

help her.

The TAPS-3 test is age appropriate - from 4-13 y/o. I trust the therapist who

gave her the test, more so than the school, who tries to lean in the direction

of less services than " we'll help however we can " . When I wrote about a

" stranger " , I was being lazy and not writing " unbiased professional yet outsider

opinion that has nothing to base past knowledge of my daughter on " . She might

get shy and not cooperate if she doesn't know you, which would only make her

test lower.

Part of me is curious what " secondary psych issues " you could be referring to,

and part of me is scared to ask. Off topic, but no better place to put this

sentence: In the past, not understanding directions caused a complete

" catatonic " shut-down - she would stare at the floor, not move, not focus, etc,

until you stopped for a minute and either broke things down or re-phrased it.

While it was occasionally behavioral, I found it to almost always be a true

issue. I haven't seen it in almost 2 years.

I am confused about the language delay. Other than grammar and minor

articulation (which I accept is part of being 6), I'm not sure what other

problems there are. It's more comprehending thoughts and instructions than

understanding actual words. And I don't want to see the stigma or self-esteem

issues when she is older, so if I can get control of it now, even better.

I will talk to her neuro next month. Usually it's a short visit - we discuss new

issues or what's being done for the current ones. If my daughter needs an eval I

will get it done and send the neuro the results. What would I even ask for from

her for an eval? (She does basic physical checks when we're there, and has done

MRI/ EEG/ blood, although I know none of that is psych related or part of a

typical eval). Any advice would be great.

Sorry to make this so long, hopefully I've answered everything you wrote. Thanks

again.