Re: School now says my DD is very low functionng ; need to vent to people who care.

[Guest guest]

hi,

First of all I am sorry to hear about your situation. First I want to offer

you a shoulder to lean on. Now I think your in a for a long battle. It also

sounds like your district is once again stating the ongoing worldwide problem of

everything comes down to funding and money. Well they are in the wrong according

to IDEA (from my understanding). Your daughter deserves an appropriate education

to the best of her ability.

Has there been any official testing done on your daughter by the school like

academic,speech, OT, ST, etc?

Has your daughter had an official IQ test of some of sort?

What are the basing this idea of theirs on?

Is there any official information to base their ludricious statements on?

Have they had an expert evaluate your daughter ?

They need to provide you with specific evals, examples, have the peolpe who

did the evals at your IEP meetings to explain why and where they are getting

their infornation ( if in fact they any ).

If I were you I would be firing all these questions at them all at once. But

make sure they present written documentation of their finding to you. If they

can not provide official documentation of where it states your daughter is low

functioning.

No one can tell or make a statement or diagnosis anyone as being low

functioning without actually doing some in depth testing and evals of some sort.

Sorry to on so strong school district just plain make me mad when they say

such ridiculous

things at IEP meetings.

If they do not have any evidence of their statements. If you have not already

please make the district test and get the evals done necessary on your daughter.

So that you can prove them wrong. Or get them done yourself ( they may end up

having to reimburse you for them if you win).

I also would suggest that you go and contact your state board of Special

Education and possibly the disabilities rights center in your state. Both of

these might be able to help you in your fight. Also contact your superintendent

of your district. Go to your school board also. Plead your case.

The more people behind you the better your fight.

Be prepared to bring a lawsuit if you have to.

I hope i have been of some help.

Best wishes,

Jeanne

mom21princess <mom21princess@...> wrote:

Hi all,

just wanted to touch base because wanted to share with all of you

mine and my DD's exerience this past 6 months while my Dd is in 1st

grade. WHAT A DISASTER! Where do I start? Well I believe I replied

to last Spring about going with her gut feeling about her

child and explained that my dd was doing so well in Kindergarten.

Great reports from Teacher and classroom assistant. WELL, this year

they descided to take the classroom aide away from my dd because they

wanted to save this ($$$$$$$$) and they did and I let them, double

UGH! I was stupid to think that her school would really be looking

out for her best interest.... Well what a disaster, again 1st grade

was (if you remember I explained how she went into the county pre

school unit and was regressing and as soon as I put her into req Pre-

K program she did nothing but flourish)!

Here we go again, this time they bullied me into putting her in the

1st grade with out any supports because it was either that or go back

into a county unit that they just braught in this year. I did not

want that again, so I tried this and as you might all know she wasn't

ready for that and dive bombed into a shell socially, emotionally but

NOT accademically. I wanted to save her so I allowed her to go into

this unit 1/2 day and 1/2 day in the reg ed class and can you all

guess, she regressed, although I didnt see it because I was too blind

by the fact that her frustration of being in with very low function

CD and non verbal autistic kids lead to very bad behaviors, telling

the teachers " no " sucking her thumb, hideing under the desks and just

wanting to hide from this sheer torture. Well I was finally able to

call an IEP meeting that took about 6 weeks to bring everyone

together because I got an advocate and also another advocate from the

Ohio Legal Rights Services (she was my BIG gun) and I was loaded with

ammunition. I also had my MIL my DH and outside SLP with me that is

only 6 people who were there to get my DD out of this unit. What was

really histerical is this director of special services guy braught a

total of 10 people including himself to state why my DD couldnt do

this and could not function because as he stated " she is very low

functioning. " THIS IS THE SAME GIRL WHO BRAUGHT HOME IN KINDERGARTEN

(only 1 year ago) PAPERS IN EVERY SUBJECT THAT REFLECTED ALL GOOD

WORK AND STARS, something is truley wrong here and it wasnt with my

DD!

Well needless to say I won but only temporarily because he is only

alowing her to have a wrap-a-round for the next 5 weeks (and believe

me she is going to need a wrap-a-round because she has let her

behsviours become a habit and plus this unit teacher never taught her

math because she did not know what she was doing accdemically). The

B#$%$d even said to my advocates and me that this will be a financial

burden, I heard that and went through the ROOF! I am sorry that this

is so long but I felt I needed to vent to everyone out there who

could relate to my story. Thanks for listening and would very much

welcome all the support anyone could give me because this ride is not

over yet....

Thanks again,

[Guest guest]

Hi Trixie,

It appears that you accepted the classification of cognitive

disability to " secure services " last year when you said in the

archive (I have below)

" Now I know in the primary grades K-4 they will put a more specific

diagnosis, my dd was given CD (Cognative disability) which is so

untrue it is scarey but they didn't know her when they gave it and

now that she has been in Kindergarten for almost 8 months now the

school even nows that that is not an acurate disgnosis

but as long as it gets her services without that autism diagnosis,

I'm happy. "

A speech or language or communication disability alone qualifies a

student for special services. I never accepted any classification

for my son Tanner just to secure services because it negatively

influences the adults that view my child (for just one reason)

My suggestion is that you immediately need to secure out of district

evaluations to help you fight this situation. Once you secure at

least one evaluation you need to contact your school to " immediately

reopen your child's IEP due to change in diagnosis " (sorry I missed

your emails - if I caught your email last year I would have told you

to do that ASAP then)

Once you have documentation from a pediatric neurologist or

developmental pediatrician or another expert you secured private that

states your child isn't cognitively disabled –you can use this in

another way. Talk about biggest gun - it wouldn't hurt to put a

call into your local Office of Civil Rights as they help advocate for

any disability. Ask a few members here who were in your situation-

when the school learned that we wanted to have a class action or

individual suit against the school for a violation of that child's

civil rights –all of a sudden the school complied. One member here

didn't care about the compliance because she felt her child's future

was at stake in that they prejudged her daughter and she moved to

another state where her mom- the child's grandmother, is a teacher.

(the grandmother traveled in to help advocate for her grandchild in

vain prior to the Office of Civil Rights getting involved) Once you

get proof your child isn't cognitively disabled I have a team to help

as well as we are `still' searching for a case that can be made an

example of so that these type of situations don't happen again. I

could post some of the archives -but this message is already so long!

It's outrageous that they somehow are able to convince intelligent

and loving parents that they have to sign IEPs with inappropriate

classifications " to secure services " It's just crazy and no district

should be able to get away with this! Doesn't anyone else see how

this is destroying that child's chance at having a bright future?!!

An apraxic or otherwise speech impaired or disabled child does NOT

have to and should NOT be classified as autistic or cognitively

disabled to secure services unless those classifications are

appropriate to your child. Once you signed that IEP you in fact

agreed to their classification –right now you need to fight that,

because according to her IEP –your daughter `is' in appropriate

placement being in a cognitively disabled placement and " you are the

emotional parent who can't accept the facts yet " (which is how

they'll paint you) Again a verbal/speech/language or communication

impairment is a disability that is covered under Federal rights and

laws for special education and for protection under the Office of

Civil Rights.

Stay calm and strong (don't get emotional in front of them if you can

help it) –keep a paper trail and be prepared to fight. If you don't –

it's clear that your district has already given up on your child and

it also sounds at this point as if your child is starting to give up

on herself. Typically the school gives up first –the parents give up

next and then the child gives up. Self esteem is so key in these

early years of development. You need to move quickly.

Keep in mind according to my school district –my son " wouldn't make

it " in a mainstream kindergarten class. Thank God Tanner had the

chance to prove them SO wrong because we fought against our school

district tooth and nail (but of course in a legal way –I stayed calm

and nice- even told jokes at their expense some which are in the

archives if anyone wonders where I get my sarcasim from). Tanner not

only proved them wrong and " made it " but he thrived. Just in case

you didn't read this –my son Tanner's story

http://www.cherab.org/information/familiesrelate/letter.html Let's

get your daughter a chance to prove them wrong too!

~~~~~~~~~~~~start of archives from you

Your archive from earlier this year and last year including one I

answered

Sun Sep 23, 2007 10:42 pm

Frustrated , needing some advise-Long

hi, my name is Traci and my dd is 7 with a diagnosis of Apraxia of

speech ,autistic charateristics,processing delays,DSI,and is

farsighted with a lazy eye and wears glasses. The reason why I am

writing to all of you is because she started 1st grade on a very bad

note and the teacher, who was previously a special ed teacher is now

teaching regular ed,was very abrupt with my dd and that threw my dd

into a state of shut down.

Here is a little history, in Kindergarten she was 1/2 day in

afternoon and there was a teachers assistant. Life was very good

and she adjusted so well. At the end of last year we all had a team

meeting and they told me that they were letting go of all the aides

and teachers assistants because the county was bringing in a Unit.

My dd has always thrived in a regular ed setting with some support,

she made some friends as well. I didnt know any better (definatley

feeling guilty) but I agreed that we would try her out in the 1st

grade with no teachers assistant and would go into the learning

center to do her work sheets because she needs additional time to

process and work. Like I said that all worked out last year

beautifully with one thing different from this year, she still had

the teacher assistant. What I didnt realize is that she was

depending on that assistant to be there as did all the kids but she

knew she needed her more and I didnt know that.

The first day of first grade she was clinging to the teacher very

badly and something happened that day that affected my dd for the

past 2 1/2 weeks, behaviours came out that I have never seen in her

especially at school. It turns out that when I went to parent

orientation, the teacher told me that she is progressing (I think

she was saying that to try and throw something positive in) and then

she says but she has been sucking her thumb ALOT and putting her

head down on her desk most of the time (I wanted to say and how is

that progressing?!!) Anyway, I beat feet from there, next morning I

came into see the principal and it turns out they want her to go

into the Unit (which I found out only has 2 very low functioning

children in there and 3 aids) not that I am singling them out from

my dd but my problem is this, The one child does not talk at all and

the other talks very minimal. My dd communicates at a 5 yo level

and plays very well with her peers. She is at grade level with

regular ed as long as she has time to process. Anyway, I then

called the director of special services and pretty much told him

that they were wrong what they did and that per her IEP that does

not end until 10/1/07 has writen on there by me (my goals) " that

communication between me and the Teacher and the Teachers aide. " He

tried to work his way around the IEP but I wouldnt let up, he agreed

with me that we could move my dd to the other 1st grade classroom.

The reason why he agreed to this is because there was a wrap around

aide with another little boy who is in a wheelchair but has no

cognative diabilities and they would share her.

Now my dd started in the other classroom this last Friday and the

morning through lunch was very good but after recess (the new

teacher told me) she told her like 5 or 6 times that she was not

going to do her math paper, they took her in the learning center

and it took her 20 to 25 minutes to write her name! This is a

behaviour from her that i am not used too because she always did her

work.

now I am getting nervous because I am trying some different

disciplinary things at home but she is being so stubborn that Im

afraid she wont continue this at school. I am so frustrated with

her and with the school because if things were just left the same as

last year I know she would have done fine, I am so afraid that this

last 2 1/2 weeks has set her back and it will take too long for her

to regain her confidence back and it will be too late.

I really needed to vent with someone who could understand.

Thank you

Traci

Re: [ ] Re: Symptoms of Autisim/PDD-

Mon Apr 9, 2007 10:34 pm

,

You are in the same situation I was in 3 years ago, my daughter is 7

yo and

everyone of her doctors told me the same as your's are telling you,

that my dd

is not on the spectrum. However the pre-school I had her in at 4 told

me the

same thing, started with the SLP and then the special ed teacher. I

refused to

believe that they had any credibility to diagnose my daughter or

teach them. So

I got her out of there FAST! She stayed in the same Pre-school

building which

housed a Head Start program but this school was actually a pre-

school/ pre-K

school as well. The Director took her in knowing that she was

definatley NOT on

the same level as the other children in that special ed classroom

that had

various diagnosis, she was brighter and most of all had the

capabilities and the

drive to be social in a typical setting. She wanted to be friends

with the low

functioning children when she was in the special ed class and often

mimicked

them, which set her back because she has

Apraxia and the special pre-school did not treat her for such, they

were

treating her as autistic (it was disasterous!) It wasn't always easy

in the

typical setting but my duaghter had a few things going for her and

that was she

caught on very fast and easily (I would not have known this unless I

put her in

that setting) and she was not disruptive to the class, the kids liked

her and

although I kept her in this pre-K program an extra year she just

turned 7 at the

end of March and is finishing up Kindergarten. I just want to let you

know that

second year in pre-K she made alot more friends and went to alot of

Birthday

parties and this braught her out of her shell. Kindergarten is even

better she

is at the top 6 in her class of 20 and she is so confident. my

advise to

you is go with your gut, but remember the schools (in my area at

least) want

that diagnosis of autism because they get more of this, ($$$$$$$$$$).

Sad to

say but it is a fact and if you feel he is

not on the spectrum, never let the school tell you that , Apraxia is a

disability and it alone requires speech, OT and PT for him through

his IEP. Now

I know in the primary grades K-4 they will put a more specific

diagnosis, my dd

was given CD (Cognative disability) which is so untrue it is scarey

but they

didn't know her when they gave it and now that she has been in

Kindergarten for

almost 8 months now the school even nows that that is not an acurate

disgnosis

but as long as it gets her services without that autism diagnosis,

I'm happy.

Good luck , you can email me off list if you need to talk

further or need

some more support.:-)

Trixie

Re:[ ] Re: Question..

" My current SLP (who did not know her from ages 4 through 7

> yo. has told me that if she truely had Apraxia it is very mild

and

> that now is dealing with a receptive/expressive language

> delay. My question is to you does this reguarly happen to

children

> with Apraxia, going from moderate to mild apraxia to

> Receptive/expressive language delay? "

Hi Janice and Traci,

Janice I do understand why you would say yes -but I say probably not.

Traci the fact that you are already signing your name

" Mom to ann 7yo Appraxia/DSI and processing delays " deeply

saddens me -you

are " mom to one princess " right?

It's clear that nn just went back to

school -what grade is she in? If she was deaf her verbal level of

communication wouldn't affect their opinion of her receptive ability.

Janice I understand why she would say what she does -she's a parent

and doesn't yet know what some of us do with older kids:

I say time for a new therapist for you Traci! ( " Act now and we'll

throw in your child's self esteem! " )

Apraxia we all have to remember, just like autism -is not what it was

50 years ago. Today the children are presenting with mulitsensory

issues so the best way to know the answers are to examine the

children in this uncensored group to hear from the parents (or the

children themselves) as the children/they grow up. We do know that

apraxia in itself is not a cognitive disorder -and we also know many

in this group like myself have children with apraxia who may have

been tested low receptively by inappropriate testing -but who test

average or above average by appropriate testing -I have to pull it up

from the archives on what to look for when it comes to appropriate

testing on receptive and cognitive ability. But it's a huge problem

when misdiagnosed.

Please proceed with extreme caution before lumping any other

diagnosis on top of " apraxia " especially when it relates to receptive

or cognitive ability since the average person on the street auto

assumes anyone with even a mild impairment of speech has some type of

cognitive delay.

Even though apraxia is a neurologically based disorder it does create

developmental delays due to the delay in developing speech. What this

means is

that some aspects you are seeing will self resolve with time...just

like they do

for " normal " kids.

My son used programs such as Earobics and Fast For Word but it wasn't

because he was diagnosed with something else on top of his apraxia -

they were to help with his one diagnosis -and we left it at that.

Nobody can say for sure whether a child who is delayed in speech for

years won't take those extra years to catch up...language takes

practice that they didn't have. This BTW is just another reason why

it's best to start your severe communication impaired child in

mainstream kindergarten at 6 vs. at 5 -to provide that extra year of

developmental time.

There is a ton on this topic in the archives -below is just one

aspect of " stages of apraxia " that I put together years ago which

shows how apraxia today could be diagnosed as other conditions -but

shouldn't be:

" Just like typically developing speech in a child, a child with

apraxia appears from the members of our large Foundation to have

stages they go through -and some children skip one or two -or pass

through some of them quickly or get stuck in one or more of them.

We don't know if all the member's children were properly diagnosed

with apraxia or not, but this may be worth looking into.

OBSERVED APRAXIA STAGES (?) THAT SHOULD BE EXPLORED FURTHER

Stage 1

non verbal stage

Where the child uses one or two sounds to communicate everything with

gestures, and made up elaborate sign. At this stage, depending on

the infant's or child's age you may not be able to diagnose verbal

apraxia, but neurological soft signs should be looked for, as well

as signs of oral motor problems or oral apraxia. An older apraxic

child who is stuck at this stage will be using augmentative devices

and could be at risk for misdiagnosis of cognitive ability if not

tested appropriately.

Stage 2

simple talk stage

Where the child begins to just like a typically developing child

learn new sounds or words, but unlike a typically developing child,

most (not all) appear to forget how to say the sounds or words

again, so they lose that ability to " build " their speech like most

other children do. This is in most cases the only stage that is

acknowledged by ASHA and described by most of the speech

professionals*. Please see examples above (breaks down with

longer utterances, etc.) An older apraxic child who is stuck at

this stage will be using augmentative devices and could be at risk

for misdiagnosis of cognitive ability if not tested appropriately.

Stage 3

Dysfluency stage

Where the child who seemed to be progressing so well suddenly begins

to stutter. Most speech professionals do not consider

classic " stuttering " only a normal developmental dysfluency.

However with apraxic children this stage is especially frustrating

in that if the apraxic child does go through this stage, they appear

to get " stuck " here. In speaking to members from the CHERAB

Foundation who's apraxic child goes through this stage, there is

frequently another member of the family who is a stutterer, which

may mean there is some type of genetic link. Type of therapy to

provide to an apraxic child at this stage that is appropriate is not

clear and depends on which expert you speak to-in some cases there

are direct oppositional views.

Stage 4

Baby Talk stage

Where the child who is now talking and being understood continues to

mix up past and present tense, as well as sentence structure, and

frequently will leave out the " little words " like " the " and " a " .

This may not have anything to do with SLI as discussed above, an

apraxic child typically does keep sentences shorter than average,

but there may be children diagnosed in the SLI area that are

apraxic, and visa versa -and being there is a genetic link

to both SLI as well as apraxia, a closer look needs to be taken at

this stage. A five year old apraxic child who receives appropriate

therapy, including some of the recent discoveries we will talk about

later, may progress faster than previously stated, however just like

in the previous stage, apraxic children also seems to get stuck in

this stage. An example would be " Me want doe too " for " I want to

go too " or " Mommy me walk store too? " for " Mommy can I walk to the

store too? "

Stage 5

Full language stage

Where the child, teenager, or adult apraxic has learned strategies to

overcome the apraxia enough that it's not noticed by the average

listener. However upon closer observation you will notice that an

apraxic in the full language stage will frequently use less

sophisticated language. An example comes in right here. Instead of

saying " an apraxic in the full language stage will frequently use

less sophisticated language " they may say " an apraxic in the full

langwish stage will not sound as grown up most of the time " So in

other words, there will still be words that he or she can not

pronounce correctly, and being aware of them, will avoid them and

substitute when they can. They can be highly intelligent, but due

to their lack of expressing themselves using sophisticated language

at times others may not know this. This is perhaps in some ways

just as frustrating a stage as any other. In some cases maybe more

so because now that they are " talking " and talking fine most of the

time, ASHA professionals may not consider them candidates for

further services. The genetic possibilities and medical involvement

needs to establish these stages, including this one, so the

population can understand and accept this disability just like they

do for those with poor eyes or poor hearing. This is an example of

a late talker that unfortunately for all did not " just start talking "

Stage 1: Most professionals don't know how to diagnose oral or

global apraxia, or diagnose suspected verbal apraxia in this stage.

This is the way almost all professionals as well as online sources

were back in 1999 when Tanner was first diagnosed. If we knew then

what we know today through CHERAB and The Late Talker -Tanner could

have had early intervention from when he first regressed at 11

months old. Can't change that which is sad -but for that reason I

continue to do what I do to raise awareness.

Stage 2: The only stage talked about (and talked about and talked

about) This is what I call the " around the corner " stage which is

covered well...well for the most part -but still the soft signs -the

multifaceted aspects are typically left out by most -soft signs like

the hypotonia, sensory integration dysfunction (called DSI instead

of SID so as not to confuse it with the sudden infant death syndrome

which my oldest son Dakota was at risk for), oral apraxia and other

motor impairments even just mild one in other areas of the body -and

new to our attention stuff like constipation and trouble blowing

their nose on command. Just today Glenn and I were driving the

boys to school and Tanner needed to blow his nose. 'Most' of the

time now today Tanner knows how to blow his nose due to lots of

practice. But like anything with apraxia -most of the time doesn't

necessarily mean all the time. I handed Tanner a tissue and he put

it up to his nose and breathed out through his mouth. I said " No

Tanner -use your nose to breath out silly! " I then helped him and

he breathed out of his nose softly -not enough to do anything. So I

said " OK you have to breath out harder so breath in and then breath

out really deep OK? " Tanner breathed in really deep and when he

went to breath out I took the tissue and really quick stuck it up to

his nose before he could breath out -but that didn't work either

because we both started laughing. Then he sneezed.

Stage 3 and 4 -not all children go through -but too many do to leave

them out, or the child is diagnosed with something else. As I know

with Tanner through Dr. Dale -Tanner's dysfluency stage was

not classic stuttering and as Dr. said " You are correct

that we have done an injustice in not studying apraxia in children

enough yet. For this reason we don't know what is 'normal' for an

apraxic child as to how long they will stay in the developmental

stage of dysfluency, but we are finding it can be quite long "

And Stage 5 -that's the one where parents see their child as " cured "

and even though they may leave the group at stage 3-5 -most leave at

5 not realizing there are strategies for older children/teens and

adults in this stage too.

EFAs speed things up a bit so children may advance quicker -but

again EFAs are not a cure -or not a complete cure. I'd like to add

to that neither is therapy a cure. Apraxia is an impairment that

one can learn to overcome and live a successful life with. Just

like a stutterer -those that don't know may not even be aware there

was any type of impairment of speech.

=====