Re: Global /Verbal Apraxia /School/California

[Guest guest]

Hi Jill,

I'm not sure if you remember, but we've emailed a few times regarding

services. I believe we are in the same school district - Saddleback Valley -

but

Brett is in kindergarten now. When Brett transitioned from Regional Center to

the school district, the school did an assessment. The assessment did no

involve any type of cognitive testing. They were simple tests for speech and

language development, and fine and gross motor skills. I was there the entire

time

he was being tested, and they did not perform any tests that required

reasoning, logic, etc. Probably the most complex thing they asked was to hand

them a

certain color block. This assessment was in no way comprehensive, and in fact

I wasn't sure why they had to do it since they had a much more complete

assessment from the clinic Brett went to through Regional Center.

I just pulled the paperwork we received when Brett was found eligible for

school services. There are several boxes that can be checked as far as

classification. It says " Eligibility for Special Education (Based on Assessment

Information), and then a box to check if the child is eligible or not. If the

child

is eligible, it says " Student eligible for Special Education under condition

of:

Specific Learning Disability

Speech and Language Impaired

Autism

Limited Intellectual Functioning

Orthopedically Impaired

Visually Impaired

Deaf/Hard of Hearing

Emotionally Disturbed

Deaf-Blind

Traumatic Brain Injury

Other Health Impaired

Non-categorical Medical Condition

Developmental Delays (ages 3-5)

So I suppose they could classify as MR or Autistic, but I don't think

they do enough testing to classify as such. The only thing they do for Autism

is the checklist, which is parent report only. As I said, there weren't any

cognitive tests given to Brett. I would think they would need much more

evidence to select those categories. From my experience, the only

classifications I

know of kids getting (from talking to other parents) are developmental delays

and autism - but autism usually only if that has been a prior medical

diagnosis. Brett had severe apraxia at age 3 when he was tested. He had global

problems, including moderate gross motor impairment and severe fine motor

impairment. He could not speak at all, and had only a few signs. He did know

his

colors, numbers and the alphabet, and could prove that through pointing. They

did not require any verbal answers to discriminate a correct answer. Brett was

categorized at the time as Developmental Delay. At this time, no one is

suggesting that Brett has anything other than apraxia and possible ADHD - which

is

not in his file at all. And in fact, his SDC kindergarten teacher has told me

that he doesn't belong in special ed because he is so bright. He's been

reading since he was 3, picks up concepts quickly and answers all the questions

in

class correctly - and with his voice! The only reservations she has

right now is his impulsivity, which we're working on.

I honestly don't think you would have a bad experience with the school

district, but if you did you could always take out. The preschool

teachers,

of course, vary widely. I can recommend Brett's teacher VERY highly. She is

wonderful, nonjudgemental, and really cares about the kids. She is also an

exceptional teacher, and really brought out a lot in Brett during the 2 years he

was in her class. I know others have had different experiences with the

school district, but I think they may have been uninformed going in, so possibly

didn't insist on the correct placement. I visited the school before Brett

entered to observe the teachers, and specifically requested the teacher. They

may

tell you that it's difficult to do that, but they'll do it for you, especially

after they find eligible. You have a voice in the decisions made, just

as much as they do. I think that with your obvious research and advocacy for

, you could make the preschool work for you.

I wouldn't base your decision about preschool on the possibility that

will be in SDC primary, where it is a combination of grades 1-3. There are so

many options before you get there, and you have a couple of years. I would

just evaluate the preschool and see what you think. As I said, there was no

" bad " diagnosis that they pushed on Brett. Of course there are games that they

play, but overall I felt that they wanted to help him.

Regarding the Regional Center desktop diagnosis - that is horrendous! I

would have it removed if I were you, but I don't think it will follow to

school. The only things that were sent to the school district were from the

actual therapy clinic that Brett attended - not from Regional Center.

As far as MD's (pediatricians and neuro's) that are knowledgeable about

apraxia in the area - I don't know of any. If you find one, I'd love to know

about

them! We do have a diagnosis of apraxia from Brett's pediatrician, but it

would be nice to have backup for our current fight with the insurance company.

So that's my experience, for what it's worth. Please email me if you have

any other questions, or you want to be put in touch with Brett's wonderful

preschool teacher.

Mommy to Brett - 5 y.o., apraxia - and doing GREAT!

[Guest guest]

Hi Jill,

One step ahead of you -I already sent the email on to Malcolm

to get the names. He travels all the time but know he will get back

to me as soon as he can.

I can tell you that there are others here from California -and it's

so worth driving for hours or even flying if all near you are that

lame. There are some awesome doctors all over this country. It

will be of course really great to get you the exact same hospital

and doctors that this other mom took her 2 year old too since the

situations are almost exactly the same and they helped her prove

their label for her daughter was inappropriate. She had severe

apraxia -that was the official diagnosis and it was for sure from

California and from medical!

I know EI records are supposed to be confidential so their MR label

should not be passed on. May have to make sure of this -it's all

pretty outrageous this is still happening in today's day and age. I

wouldn't put anything in writing however until you have a signed

evaluation from a respected neuroMD together with SLP to support

what they wrote is both inappropriate labeling and detrimental to

.

School records are a different story and the labels carry through

and are very hard to get rid of. is still classified as MR even

though she at this point has overwhelming evidence it's global

apraxia. http://www.cherab.org/news/.html

When I was talking to (Khalid's mom

http://www.cherab.org/information/familiesrelate/success.html ) earlier about

you she

told me that a friend of hers was told the same thing -that the

label of MR was the only way to secure more services -so she signed

it. The child is now older and the school is fighting to take away

all services because...he's MR of course (so no amount of ST will

improve his situation!) She'll post the details I'm sure.

Don't worry -we'll get you and through this! I'll put

California in the subject name so others there can contact you too!

=====

[Guest guest]

Thank you so much ! You truly are an inspiration. I also

appreciate personal stories such as 's, I hope that with all

of the information I have learned (and continue to learn) here that

I can prevent from having to deal with all that has

had to go though. No child should ever go through that.

Thank you for your help.

Jill - Mom to (age 4)

> Hi Jill,

>

> One step ahead of you -I already sent the email on to Malcolm

> to get the names. He travels all the time but know he will get

back

> to me as soon as he can.

>

> I can tell you that there are others here from California -and

it's

> so worth driving for hours or even flying if all near you are that

> lame. There are some awesome doctors all over this country. It

> will be of course really great to get you the exact same hospital

> and doctors that this other mom took her 2 year old too since the

> situations are almost exactly the same and they helped her prove

> their label for her daughter was inappropriate. She had severe

> apraxia -that was the official diagnosis and it was for sure from

> California and from medical!

>

> I know EI records are supposed to be confidential so their MR

label

> should not be passed on. May have to make sure of this -it's all

> pretty outrageous this is still happening in today's day and age.

I

> wouldn't put anything in writing however until you have a signed

> evaluation from a respected neuroMD together with SLP to support

> what they wrote is both inappropriate labeling and detrimental to

> .

>

> School records are a different story and the labels carry through

> and are very hard to get rid of. is still classified as

MR even

> though she at this point has overwhelming evidence it's global

> apraxia. http://www.cherab.org/news/.html

>

> When I was talking to (Khalid's mom

http://www.cherab.org/information/familiesrelate/success.html )

earlier about you she

> told me that a friend of hers was told the same thing -that the

> label of MR was the only way to secure more services -so she

signed

> it. The child is now older and the school is fighting to take

away

> all services because...he's MR of course (so no amount of ST will

> improve his situation!) She'll post the details I'm sure.

>

> Don't worry -we'll get you and through this! I'll put

> California in the subject name so others there can contact you too!

>

> =====

>

[Guest guest]

Hi and Jill,

I'll forward these messages to my friend mentioned. Her dyspraxic

son is a close friend to my son Jadd. Both our sons get together

quite often to play. I'll ask my friend if she would answer this

in better detail, informing parents to be aware. It's alarming what

happened to her son and her fight for appropriate services. Her son

still struggles with his speech, however, Jadd and I do understand

him enough to know how well he comprehends all that is said to him.

This child is definitely not MR.

Mustafa

>

> When I was talking to (Khalid's mom

http://www.cherab.org/information/familiesrelate/success.html )

earlier about you she

> told me that a friend of hers was told the same thing -that the

> label of MR was the only way to secure more services -so she

signed

> it. The child is now older and the school is fighting to take

away

> all services because...he's MR of course (so no amount of ST will

> improve his situation!) She'll post the details I'm sure.

>

> Don't worry -we'll get you and through this! I'll put

> California in the subject name so others there can contact you too!

>

> =====

>