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Re: Hi everyone, I need some advice/input. (long, sorry)

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Hi Kayce,

I am so sorry they misled you so!  It must really just want to go over there and

set them straight, but most likely a lawyer can help now and I'm not sure where

to begin. Do you have paper trail of written requests asking for sign? Can you

get the aid to give you in writing that she was told not to use sign because you

didn't  want it. She may back out, that happens with teachers too, they change

their story at the IEP/hearing etc. because that's where their pay comes from

and the child/parent comes and goes, they have to stay there and work with their

boss and school so they do as they are told.  Get everything backed up, pull out

your tapes if you had them, letters everything and especially get the aid to

give you something in writing. 

Now that's the warrior in me.  The

infuriated mom who says how can they do this to a child and not despise

themselves when they look in the mirror in the morning?  Now the reality---if

you can at all--it may actually be better to get your child to a different

school district, school etc. In other words move him, move to another town, try

to find a system you can work with.It just may be the best option in extreme

circumstances I've heard it over and over...

A lawyer may give you a free consultation and tell you how much of a leg you

have to stand on and if you actually have a good placement privately for your

child where they can sign etc. you may stand a chance to request that after

their blunder--if you can prove it.  But it is " IF " and in the end they may give

you anything you want on paper but in practice it may not play out so it really

is very tricky.

I have my own school district battles and because they've not yet offered my 4

year old daughter an

appropriate IEP placement for her apraxia, in fact a whole year went by without

them offering anything at all, they dragged their feet for months just to do the

evaluations and then again to set up an IEP meeting and then even more months to

set the next one after more evals were needed based on the first IEP meeting. I

have hired a lawyer and am going to mediation and hope to get private

reimbursement for her speech and preschool.  For the past year they have agreed

to do it but claim they have an appropriate offer (an autistic program with 6

boys in class--I have a girl who is NOT ASD--and the speech they offered is

deplorable, no PROMPT, not even appropriate amount or 1:1-- I was told they

would go off into a corner and work on speech or in the classroom setting--as if

that ever works with an apraxic child, especially when it's not even motor

planning speech therapy, Anyway, at this point I am risking a lot by pursuing

this further--I mean

financially because lawyers don't come cheap, but there's just no way I would

trust them with my daughter's education or speech therapy, so I feel I can only

try to continue to get it outsourced.  The costs are so high to do it all

private that if they even covered half of it I'd be thrilled now.

So there are different models, but what ever you decide to do, make sure it's

worth the trouble and you don't come out with something that looks good on paper

but in practice it just doesn't get applied.  and it's hard to go check,

especially if your child can't tell you about it.  I know of two moms who

thought their child was getting 1:1 and didn't find out until 8 m later that he

was actually getting group therapy because that was all the SLP could fit in and

1:1 happened most infrequently.  So just weigh everything carefully and if you

suspect they are as bad as they sound from this particular instance where they

so diabolically

misled you and down right lied, then you may just do better somewhere else,

really.  Conserve your efforts for battles worth fighting and good luck!

-Elena---mom to Ziana-age 4, apraxic with upper trunk hypotonia + other

soft signs, but otherwise a happy healthy child and improving every day

now that appropriate PROMPT therapy, OT, diet/supplements and preschool

have all been implemented--But let me tell you, the supplements were

what made the other interventions possible!

From: kayce_the_nut <kaycespader@...>

Subject: [ ] Hi everyone, I need some advice/input. (long,

sorry)

Date: Tuesday, September 30, 2008, 9:25 PM

I'm not sure if anyone remembers me. It's been about a year since

I've been on this board.

Cody is now 7, 1st grade.

DX. Severe Apraxia (unintelligible)

Hyperactivity w/ impulsivity

Motor Planning Disorder

Mainstream 1st grade, resource room pull out reading/math (which I

think is a huge mistake..way to easy for him).

Okay, here are

my current problems.

1. Everytime I have a question about Cody's school work, placement,

homework, anything...the director/teachers all feel that they need to

run every thing past the SLP. For example. Cody came home with a

packet of homework that was due at the end of the week from resource

room. It was way to easy, done in less than 20 minutes. I sent a

note to the teacher asking if he can have some extra worksheets. She

responded with no, it's her policy..but she spoke to the SLP who says

he can practice speech sounds. Okay, I know that speech is a huge

factor in my sons life, but it's not EVERYTHING. Speech sound

practice is not HOMEWORK. I thought there was some sort of law under

the IDEA that says that they're not supposed to " teach " TO the

disablity (I may not be phrasing this right).

2. This is Cody's FIFTH year in this school (preschool, preschool,

preK, kindergarten, now 1st grade). Since the

first day he walked in

the door, I've been begging fo rthem to teach him sign. I've had

professionsls write letters that have all stated that he needs to be

signing. Shot down everytime. They did an aug comm eval & pushed for

the picture book (which he hates). I've tried to teach him sign, but

when you don't have the school to back you on it, it's kind of like

hitting a brick wall all the time. The SLP has finally agreed to add

" some " sign to her sessions (not because she wanted to, because I

pushed a different point that it would aide with reading). Anyway, I

just found out tonite that the aide that was with Cody for THREE YEARS

is fluent in signing (her 2 sons are deaf). She was told that she

couldn't sign, because 'mom' didn't want Cody learning sign.

You can just imagine how nauseas I felt at that moment. Years of

struggling to communicate with my baby could've been (and still can

be) so much

easier.

My husband wants me to get an attorney, but I'm not even sure how to

start this.

Please help me..I didn't know who else to turn to.

Many thanks.

Kayce

(mom to Cody 7, Sydney 7, 15)

------------------------------------

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Im sure some others on here may have better advice but I would call

an IEP meeting- assuming, surely he has an IEP

>

> I'm not sure if anyone remembers me. It's been about a year since

> I've been on this board.

> Cody is now 7, 1st grade.

> DX. Severe Apraxia (unintelligible)

> Hyperactivity w/ impulsivity

> Motor Planning Disorder

> Mainstream 1st grade, resource room pull out reading/math (which I

> think is a huge mistake..way to easy for him).

> Okay, here are my current problems.

> 1. Everytime I have a question about Cody's school work, placement,

> homework, anything...the director/teachers all feel that they need

to

> run every thing past the SLP. For example. Cody came home with a

> packet of homework that was due at the end of the week from resource

> room. It was way to easy, done in less than 20 minutes. I sent a

> note to the teacher asking if he can have some extra worksheets.

She

> responded with no, it's her policy..but she spoke to the SLP who

says

> he can practice speech sounds. Okay, I know that speech is a huge

> factor in my sons life, but it's not EVERYTHING. Speech sound

> practice is not HOMEWORK. I thought there was some sort of law

under

> the IDEA that says that they're not supposed to " teach " TO the

> disablity (I may not be phrasing this right).

> 2. This is Cody's FIFTH year in this school (preschool, preschool,

> preK, kindergarten, now 1st grade). Since the first day he walked

in

> the door, I've been begging fo rthem to teach him sign. I've had

> professionsls write letters that have all stated that he needs to be

> signing. Shot down everytime. They did an aug comm eval & pushed

for

> the picture book (which he hates). I've tried to teach him sign,

but

> when you don't have the school to back you on it, it's kind of like

> hitting a brick wall all the time. The SLP has finally agreed to

add

> " some " sign to her sessions (not because she wanted to, because I

> pushed a different point that it would aide with reading). Anyway,

I

> just found out tonite that the aide that was with Cody for THREE

YEARS

> is fluent in signing (her 2 sons are deaf). She was told that she

> couldn't sign, because 'mom' didn't want Cody learning sign.

> You can just imagine how nauseas I felt at that moment. Years of

> struggling to communicate with my baby could've been (and still can

> be) so much easier.

> My husband wants me to get an attorney, but I'm not even sure how to

> start this.

> Please help me..I didn't know who else to turn to.

>

> Many thanks.

> Kayce

> (mom to Cody 7, Sydney 7, 15)

>

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Kayce welcome back!

It's too late at night for me to answer now (and no quick archive)

Besides this sounds like a question for our shy miss Cheryl

. http://cherab.org/about/cheryl.html

I'll get back to you with her wise advice since I post for her here.

Perhaps others here can jump in too as this is just crazy and we've

got to get that child into appropriate placement!

=====

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Hi Elena. youe daughters story with the school sounds almost

identical to what my pub school (GA) offered my son last yr- only I

tried it and fought to get increased therapy time and 1:1. I was

misled (I feel intentonally) that my son was recieving 1:1 for a

couple months until I started requesting to observe a session- it

finally came out. I am still battling to get it written into the IEP

that it is 1:1- they still have it written 'direct service' which

includes group therapy.

Additionally, the SLP has NO experience with apraxia and is just

certified the end of last year. She does not know how to treat

apraxia with PML (motor learning), cuing , Kaufman- nothing. I would

love to know how things work out in your case since you rejected

their offers altogether. I have been afraid to do that. Please keep

us posted!

>

> Hi Kayce,

>

> I am so sorry they misled you so!  It must really just want to go

over there and set them straight, but most likely a lawyer can help

now and I'm not sure where to begin. Do you have paper trail of

written requests asking for sign? Can you get the aid to give you in

writing that she was told not to use sign because you didn't  want

it. She may back out, that happens with teachers too, they change

their story at the IEP/hearing etc. because that's where their pay

comes from and the child/parent comes and goes, they have to stay

there and work with their boss and school so they do as they are

told.  Get everything backed up, pull out your tapes if you had them,

letters everything and especially get the aid to give you something

in writing. 

>

> Now that's the warrior in me.  The

> infuriated mom who says how can they do this to a child and not

despise themselves when they look in the mirror in the morning?  Now

the reality---if you can at all--it may actually be better to get

your child to a different school district, school etc. In other words

move him, move to another town, try to find a system you can work

with.It just may be the best option in extreme circumstances I've

heard it over and over...

>

> A lawyer may give you a free consultation and tell you how much of

a leg you have to stand on and if you actually have a good placement

privately for your child where they can sign etc. you may stand a

chance to request that after their blunder--if you can prove it.  But

it is " IF " and in the end they may give you anything you want on

paper but in practice it may not play out so it really is very

tricky.

>

> I have my own school district battles and because they've not yet

offered my 4 year old daughter an

> appropriate IEP placement for her apraxia, in fact a whole year

went by without them offering anything at all, they dragged their

feet for months just to do the evaluations and then again to set up

an IEP meeting and then even more months to set the next one after

more evals were needed based on the first IEP meeting. I have hired a

lawyer and am going to mediation and hope to get private

reimbursement for her speech and preschool.  For the past year they

have agreed to do it but claim they have an appropriate offer (an

autistic program with 6 boys in class--I have a girl who is NOT ASD--

and the speech they offered is deplorable, no PROMPT, not even

appropriate amount or 1:1-- I was told they would go off into a

corner and work on speech or in the classroom setting--as if that

ever works with an apraxic child, especially when it's not even motor

planning speech therapy, Anyway, at this point I am risking a lot by

pursuing this further--I mean

> financially because lawyers don't come cheap, but there's just no

way I would trust them with my daughter's education or speech

therapy, so I feel I can only try to continue to get it outsourced. 

The costs are so high to do it all private that if they even covered

half of it I'd be thrilled now.

>

> So there are different models, but what ever you decide to do, make

sure it's worth the trouble and you don't come out with something

that looks good on paper but in practice it just doesn't get

applied.  and it's hard to go check, especially if your child can't

tell you about it.  I know of two moms who thought their child was

getting 1:1 and didn't find out until 8 m later that he was actually

getting group therapy because that was all the SLP could fit in and

1:1 happened most infrequently.  So just weigh everything carefully

and if you suspect they are as bad as they sound from this particular

instance where they so diabolically

> misled you and down right lied, then you may just do better

somewhere else, really.  Conserve your efforts for battles worth

fighting and good luck!

>

> -Elena---mom to Ziana-age 4, apraxic with upper trunk hypotonia +

other

> soft signs, but otherwise a happy healthy child and improving every

day

> now that appropriate PROMPT therapy, OT, diet/supplements and

preschool

> have all been implemented--But let me tell you, the supplements were

> what made the other interventions possible!

>

>

>

>

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Hi Kayce,

 

You may want to consider a special needs coach (see when you disagree with

placement) .

 

We have had alot of success using Dr. Crum. She works via teleconference

or internet, reviews records and makes suggestions for an individualized program

for your child.   I hope you can get what you need for him at school.   We had a

very long battle with they system , until we got some very experienced coaches ,

advocates, and neuropsychologists on board.   It seems the school prefers to

take the path of least resistance, atleast in our experience.

 

 

Good luck.

 

 

Sharon

 

 

 

When do you really need a special needs coach or advocate?

 

Almost anyone dealing with the needs of a disabled child would probably benefit

from the assistance of a special needs coach; if only to have someone to listen

when you are frustrated, someone to provide some guidance when you are

overwhelmed, or someone to coach you through feelings of despair.

 

But, there are particular situations where having a special needs coach is

important for you, for your child and for your family.  This newsletter will

discuss some of the situations and why you will want to find a special needs

coach to help you address these particular situations.

 

Often people tell me they’d really like the services of a special needs coach,

but their budget is simply too tight to accommodate it.  These individuals need

to remember that an investment in prevention can reap huge profits in terms of

avoiding stress, aggravation and thousands of dollars in subsequently attorney’s

fees trying to remedy situations that could have been avoided.  If you have a

special needs child, visit your budget and find areas you can cut expense, so

you can access this important resource when needed.  In terms of the budget

cutting, here are some ideas to consider:

 

·        Contact your local energy company and ask them to come to do an energy

audit and give you specific information on how to lower your energy bills.

 

·        If your child receives social security.  Contact your local phone

company and advise them you want to change your phone line to a Lifeline – which

can provide phone service for as little as $3.50 per month.

 

·        If your child is under five years of age, contact your local health

department to find out about eligibility for WIC

 

·        Call the local churches in your area to find out if any participate in

the SHARE program which permits families to purchase food at significantly

discounted rated.

 

·        Consider replacing paid child care with volunteer college students in

psychology or special education who may be able to receive college credit for

their experience working with your child.

 

·        Contact your mortgage holder to restructure your mortgage for a lower

interest rate over 40 years.  This gives you flexibility in your budget. When

you have the extra funds, pay what you would have been paying for you 25 year

mortgage and the extra will be deducted directly off the principal and shorten

your terms. When you can’t spare the money, pay the lower rate.

 

·        Consider getting a credit card that offers a good reward – such as free

gas cards – for points earned. Then, charge all of your regular monthly bills to

this one card and pay it off at the end of the month. This makes for simplified

record keeping, a good credit record and gives you free gas every month.

 

·        Consider carpooling to and from work, to and from school, as well as to

and from kids’ activities.

 

·        Check into your State’s Health insurance program for disabled children.

Sometimes it is worthwhile to take your children off your wok plan and put them

on the State’s plan because of lower premiums and lower deductible and co pays.

 

·        If you have a lot of credit card debt, see if you can consolidate it

all with one credit card company with a low interest rate.  NEVER, however,

consolidate it with a second mortgage or home equity loan. Your home is your

primary financial investment and should always be protected.

 

So, now that you have given yourself some financial leeway, does that mean you

should run out and hire a special needs coach?  Not necessarily.  It does mean,

however, that if a situation arises that necessitates doing so; you will have

some savings in the bank and some flexibility in your budget.  Here are some of

the situations where it is probably beneficial to hire a special needs coach to

assist your family.  

 

When you and your spouse can’t agree on how to deal cope

 

The divorce rate among parents of disabled children is the highest in the

country.  Financial and emotional stress, lack of respite, lack of understanding

on the part of family members, friends and neighbors, conflict with the school

district and an inability to agree on how to cope with all of this are major

factors contributing to this problem.  The fact is disabilities can take as big

a toll on the caregivers as they do upon the disabled.  Unfortunately, unless a

couple has extremely good problem solving skills and learns how to work as a

team to access other sources of support, they become isolated from the broader

community and then from one another.  A special needs coach can help you get

back on the same team and learn to reign in sources of support that you may have

been unaware of or those that have drifted away (friends, co-workers, family

members) due to a lack of understanding of the problem, the long term nature of

your child’s needs,

and lack of knowledge about what they can specifically do to help.   

 

While the divorce rate is around 20 percent for families of most disabled

children, it has dropped to only 8 percent for families of Down’s syndrome

Children. This is because these parents generally receive realistic advice

regarding what they can and cannot expect from their children, as well as to the

“Down Syndrome Advantage” which refers to the personality and behavior of most

children with the syndrome; which is generally compliant and presents fewer

problems in practical behavior management than other disabled children. 

Additionally, schools are better equipped to deal with Down Syndrome Children

than they are those who manifest behavioral problems, and thus, parents of Down

syndrome children have less conflict with the school district.  Another factor

is that parents of children with Down syndrome are often older, more educated

and married before having children so they generally have a better financial and

social support base.

 

For most parents of disabled, however, there are high levels of marital discord

between the partners with feelings of low self-esteem, helplessness, resentment

over the excessive demands on time, and the financial burden all strain the

marital relationship.  Through coaching sessions, a special needs coach can help

a couple grieve the loss of the normal child they hoped for and gain an

understanding of what they might realistically expect for and of their child.

The coach can help both parents find positive ways to attach to and enjoy their

special needs child,  develop strategies to share the added work and

responsibility along with strategies for self-nurturing,  learn how to make the

important job of educational advocacy an efficient routine,  learn how to

explore alternatives together and make a joint commitment to a plan of action. 

One of the advantages of internet coaching sessions for the parents of special

needs children is the

convenience:  there is no need to get a sitter, you don’t have to drive

anywhere, and you don’t need to take time off from work. Just schedule your

appointment and log on to your computer at the appointed time to speak chat with

the coach from the comfort of home in the evening after the children are in bed.

 

When your emotion is driving your interactions with the school district

 

If you feel like you are talking to a brick wall or if you feel yourself

becoming more and more frustrated because school staff do not take your opinions

seriously, it is time to seek out the assistance of a coach. The fact is that

while parents are not necessarily experts in education or special education,

they are experts in their own children.  When you are dealing with a school

system that does not respect your assessment of your child’s needs and

strengths, it is highly unlikely that you will obtain an IEP that is reasonably

calculated to insure that your child make meaningful progress on your own. 

Remember, when you are hurt, angry or upset you cannot present your child’s case

objectively or effectively, thus, it is time to hire a special needs advocate.

 

When you feel your child is being bullied or harassed

 

The research is clear that the effects of bullying and harassment upon a child’s

level of self-confidence and self-esteem can be long term.  Moreover, your child

will not learn well when worried about when they will be teased or pushed or

shoved.  So, if your child is experiencing any form of bullying or harassment by

peers, older children or educational staff you need to take immediate action.

Talking to the teacher or the principal is insufficient. This is the time to

call your special needs coach and to make certain both that your child receives

immediate protection and that the root of the problem is addressed. 

Unfortunately, if you try to address this on your own, you are likely to be

dismissed as an overprotective parent. This is why it is important to have

someone who can speak with authority about both the effects of bullying and the

school’s obligation to protect your child.

 

When you  feel your child is being discriminated against

 

Your child might be experiencing discrimination by being separated from non

disabled peers at lunch.  Or perhaps because your child rides a special needs

bus they are always picked up later than non disabled peers or sent home

earlier.  It may be that accommodations are not made for your child to go on the

same field trips as non disabled peers; or your child may be excluded from

participation in recess because there isn’t an aid available to provide

assistance. It may be that your child is excluded from the gifted and talented

class because of a specific learning disability in mathematics, or you may

discover that your child has been omitted from computer classes because there

are no touch screen’s or joysticks which your child can manipulate. It may even

be that the teacher doesn’t reward your child with “lunch with the teacher” for

good behavior like the other students because your child is incapable of meeting

the same behavioral

standards as typically developing children.  If these or any of a myriad of

other acts of discrimination are being perpetuated against your child, it is

time call your special needs coach and ask them to arrange an emergency IEP

meeting to address the issue.  Your coach will guide you through the type of

documentation you need to maintain, as well as the right places and ways to

complain.  The coach will also be the one to confront school staff and demand a

resolution so that you, who have to work with these people long term, don’t have

to play the heavy.

 

When you  feel your child is developing school phobia

 

When you begin to notice that your child has a headache or stomach ache or is

oversleeping on school days, but not on weekends.  When they go to the nurse’s

office and ask to be sent home sick; but, seem fine after an hour, it is time to

recognize the fact that something is wrong in your child’s school environment. 

One of the best ways to determine what is stressing your child and creating this

avoidance is to have a special needs coach, accompany you to your child’s school

unexpectantly.  Then, advise the principal that your coach wants to observe your

child right now to see how they are functioning in school since they are

resistant to attending each day.  Do this two or three times,  once your special

needs coach has a good idea of what is going on, then call for an emergency IEP

meeting so your coach can present their observations and a proposed behavioral

intervention plan with positive behavioral supports to alleviate the issues

causing

your child to avoid school.  You’d be surprised what you learn in such

observations. In my own child’s case, I discovered that the reading teacher was

telling children if they didn’t pass the FCAT everyone would call them

retarded.  That was sufficient to worry my little one so much that she cried for

hours each morning before school. In another case, I discovered that even when I

was physically present conducting an observation a special education teacher was

physically abusive towards an autistic child to the point of hurting him. 

Needless to say, in the first case, I had the principal and guidance counselor

give some training to the teacher and in the latter we developed an appropriate

behavior intervention plan with positive behavioral supports and insured the

child was not returned to that teacher’s class for the next year as the school

had originally planned had intended.

 

When you disagree with the school district’s evaluations

 

This is one of the most important times to tap into the expertise of a special

needs coach. Frequently parents know they disagree with the school district’s

evaluations, but they lack the background to point out the specific inadequacies

of the evaluations and to formulate precisely what they need an independent

educational evaluation to include.  It may cost you a few hundred dollars to

have a special needs coach compose this letter of objections and desired

resolutions for you, but it will save you a tremendous amount of time and

aggravation in obtaining appropriate evaluations.

 

When you disagree with the school district’s placement

 

When you know in your heart that the placement your child is in is not

appropriate, it is time to get help. Districts traditionally move to one of two

extremes, they want to isolate and segregate special needs children to the point

that they are stigmatized and socialization suffers, or in the name of

“inclusion” they place your child in an alleged “least restrictive environment”

that lacks the supports and environmental structure your child needs to succeed.

When you protest either placement, parents are often offered another placement

that is even more ludicrous than the first.  The fact is if the district doesn’t

have what your child needs they have few choices:  create it, tuition your child

to another public school that does have what your child needs, or cover the cost

of a private school that can meet your child’s needs.  Persuading districts to

do what is necessary, however, can require a soft voice and a big stick, and

this is

where your special needs coach comes in.

 

When you feel your  child has undiagnosed disabilities that the school is not

addressing.

 

Many parents of special needs children wait too long to get help. Partly this is

because they have trouble accepting that their child is disabled and the extent

to which that impacts on their child’s life and their own.  Partly, it is

because they believe they should be able to cope on their own.  Partly, it is

because parents naively trust doctors to know what is best for their children

(though physician are trained to treat illnesses not to deal with quality of

life and educational issues), and partly because parents make the mistake of

assuming that anyone who has chosen to work as an educator likes children and

will have their child’s best interest at heart.  This is simply not the case; if

it were there would have never been a need for congress to write the All

Children’s Handicap Act and to mandate that school districts admit and educate

disabled children.  It can’t be stressed enough that the time to get the help of

a special needs

coach is as soon as you become aware that your child has a problem.  The

earlier the coach helps you communicate to the district that you are educated

parents who know your child’s rights, the more likely that your child will

receive what he or she is legally entitled to and the less valuable educational

time that will be lost.  You need coaching from day one to help you learn about

the laws and to master the skills of effective advocacy which you will need

until your child either graduate high school or ages out of the system at age

21.  Don’t delay, act now to seek out a professional you feel comfortable with

as a resource person to call upon throughout your child’s educational career

whenever the need arises.

 

If  your child is in danger of being arrested or suspended or expelled for a

crime related to a manifestation of their disability

 

Many schools have created a school to prison pipeline and don’t hesitate to call

the police when your child acts in an unacceptable manner; even if the behavior

is clearly a manifestation of the disability. The fact is even if you need an

attorney to deal with the legal charges, you need a special needs coach to

assist you in getting a manifestation determination meetings so that placement

can be re-evaluated, a behavioral intervention plan can be developed or

adjusted, positive behavioral supports can be implemented and community based

instruction in decision making skills can be incorporated to your child’s IEP so

that your attorney will have something to present to the judge showing that this

was a function of a disability and that you are taking constructive action to

address it.  Moreover, you’ll need your special needs coach to make it clear to

the district that calling the police and getting your child into the legal

system will not relieve

them of their responsibility to educate your child.   You will need someone

consisitent,  calm, cool and collected  to remind them that if they feel the

need to suspend to expel your child, then your child’s placement is

inappropriate and an emergency IEP team meeting needs to be convened to develop

a more appropriate IEP with a placement where your child can be supported and

can learn skills necessary to functioning independently as a contributing member

of society upon completion of their public education.  This might mean placement

in a special needs day school or even a residential program; but, whatever it

means, your special needs coach will help you develop and present a

well-reasoned program.

 

If your child has been in a serious accident that caused a mild traumatic brain

injury

 

Following traumatic brain injury children may have many deficits that they did

not have prior to the incident; and deficits that were previously present may be

greatly exacerbated.  Frequently children with ADHD fall victim to motor vehicle

accidents because the same distractibility and impulsivity that contribute to

problems in other areas of life make them poor drivers.  Unfortunately, when

they return to school staff too often lacks the knowledge on how to address

their new deficits, and tends to classify the new issues as a function of

motivation, temper or emotional ; when they may be direct sequalae of the mild

TBI.  In this case, you need someone who understands TBI to attend IEP team

meetings and educate staff.  Your child will need interventions specifically

designed to address the acquired deficits associated with their TBI and your

child’s teacher’s will need to learn about these acquire deficits and

appropriate interventions.  Your

special needs coach can assist both you and the district staff through this

process.

 

If you  are going through a divorce, adoption, death in the family that is being

manifest in your child’s behavior at school

 

Any major stressor can have an impact on the physical or mental health of a

child; that they may not be equipped to communicate and discuss; this can be

even truer for special needs children who have deficits in coping skills and

expression.  If you are having a difficult time dealing with a major life

transition or stressor, your child probably is also.  Moreover, you are likely

to be less patient with your child due to your own level of stress. This is why

this is a good point in time to have a few coaching sessions to improve you own

coping skills and it may even be a good time to ask if your child would like a

couple of coaching sessions.  Internet sessions are particular attractive to

children who have grown up with the internet and to those will deficits in

social skills and communication. It is a tool they are familiar with and it

permits them to “talk about” their feelings without having to deal with someone

face to face.

 

The school says your child’s grades are too good for him to qualify for special

education

 

This is a tactic that schools often employ to avoid providing needed services. 

The reality is they are responsible for addressing not only your child’s

academic weaknesses, but also their weaknesses in communication, social skills,

life skills, employability skills, coping skills and physical skills.  However,

when your child is performing academically at grade level (often because of

outside tutoring, related services or help from parents), schools frequently

turn a blind eye to these other needs for which the law holds them responsible. 

The fact is, at this point you may need the assistance of a special needs coach

to assert your right to have observations performed at home and in the community

to identify these other needs which should be addressed by the school district.

 

Different professionals all seem to be telling you different things

 

This is where a special needs coach with background and training in

neuropsychology, psychology, and special education can be particularly helpful.

The coach can review all the records from different professionals and help you

integrate them, prioritize their recommendations, and determine which

recommendations are most feasible for your family to implement.  A coach can

help you translate the “jargon” of various disciplines into common language and

weigh the pros and cons of various options to develop the plan that will be most

beneficial to your particular family in supporting your special needs child.

 

You are going through a major change in financial status and can no longer

afford to maintain supplemental or related services we were providing due to the

inadequacy of the school’s program

 

If your special needs child has been holding on in school because you have been

using private insurance or your family’s funds to provide speech therapy,

occupational therapy, physical therapy , tutoring or homework assistance and it

is taking a financial or emotional toll on your family, it is time to ask a

special needs coach for assistance.  The school is responsible to provide a

sufficient frequency and intensity of services to meet your child’s needs in

order to close the gap between your child and his or her age cohorts in all

significant domains (academic, social, behavioral, coping skills, communication,

employability, life skills) to the point that they prepare your child to

function as a self-sufficient adult and contributing member of society.  If you

have to supplement the services provided by the district the district is not

meeting its responsibility and they need to be held accountable to stand up and

do the job you, a taxpayer, are

paying them to do.  Your special needs coach will help you prepare your

arguments, gather your documentation and present your information effectively. 

If the district doesn’t cooperate your coach can guide you in filing federal and

state complaints or assist you with mediation and in the preparation for due

process.

 

You are getting divorced and need some help negotiate who will be responsible

for what with your special needs child

 

Divorce is usually contentious when there are minor children involved and more

so when there are children with special needs.  All too often, Dad leaves and

pays a court ordered amount of child support that doesn’t begin to meet the

financial requirements of a special needs child.  Of course, you can battle it

out in court with attorneys and exhaust what limited resources the family has to

begin with. Or you can try to negotiate a reasonable plan with the help of a

special needs coach to fairly and manageable distribute the financial and care

giving responsibility associated with having a special needs child.  Once an

agreement has been reached, then you can approach an attorney jointly and ask

for it to be formalized and filed legally; probably with considerably less

hostility and expense that would have otherwise been involved.

 

But, we really don’t have any extra money

 

Should you save up and wait until I absolutely need help to pay for a special

needs coach?  No! An ounce of prevention in special education is worth thousands

and thousands of dollars and many stressful hours trying to rectify a bad

situation.  Contact a special needs coach as soon as you realize your child is

not receiving what they should be receiving from the school.  The earlier you

intervene the less time your child will struggle with a denial of a free and

appropriate public education (FAPE).

 

What should you want to look for in a coach?

 

1.     Someone with a Ph.D. in psychology, neuropsychology, or  special

education with a thorough knowledge of both normal and abnormal child

development, tests and measurements, IDEA and NCLB

 

2.     Someone with five or more years experience dealing with school systems

 

3.     Someone with good solid references from other parents

 

4.     Someone who will teach you the skills of self-advocacy

 

5.     Someone with coaching or counseling training and  experience

 

6.     Someone who can remain calm and polite while at the same time remaining

steadfast

 

 

Presented as a community service by

 

L. Crum, B.S., M.S., Ph.D.

 

Special Needs Coach

 

Able2Learn

 

Email:  Able2learn@...

 

Voice and Fax:  863-471-0281

 

Website:  www.specialeducationsupport.org

 

This message was sent from S. L. Crum, B.S., M.S., Ph.D. to flipperlang@

 

The information transmitted is intended only for the person or entity to which

it is addressed and may contain confidential, proprietary, and/or privileged

material. Any review, retransmission, dissemination or other use of, or taking

of any action in reliance upon, this information by persons or entities other

than the intended recipient is prohibited. If you receive this in error, please

contact the sender and delete the material from all computers.

Sharon Lang

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: Hi everyone, I need some advice/input. (long,

sorry)

Date: Wednesday, October 1, 2008, 12:08 AM

Kayce welcome back!

It's too late at night for me to answer now (and no quick archive)

Besides this sounds like a question for our shy miss Cheryl

. http://cherab. org/about/ cheryl.html

I'll get back to you with her wise advice since I post for her here.

Perhaps others here can jump in too as this is just crazy and we've

got to get that child into appropriate placement!

=====

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Questions from Cheryl VP of CHERAB

http://cherab.org/about/cheryl.html

(now I typed this as she talked and she was PISSED hearing this story

and she's from Jersey so she talks a mile a minute but think I got

most of what she said) Also I told Cheryl I thought you were from

Jersey so some of her answers are directed to that:

" Who is the designated case manager for this child? If it is not the

SLP then the SLP can not give directives for classroom instruction

work. The SLP should only be responsible for speech therapy if she

is not the case manager. Also in the IEP the person that is

responsible for classroom instruction should be clearly designated

and it should be the classroom teacher.

If the parent comes to the classroom teacher and the concern is about

class work or homework the classroom teacher must sit down with the

parent and discuss the problems about the work. The classroom

teacher is to follow the core curriculum standards for that grade

level unless the IEP specifically states that child is not to follow

the core standard due to accommodations, modifications or alternate

work...but that should be in the IEP because " you can't go along

making up things as you go along "

If the teacher and parent can not agree on this problem with the work

then they must call the case manager to come in for a meeting. The

teacher should be following the NJ core curriculum content

If the classroom teacher and and the parent can not agree the parent

needs to take this to mediation due process with the director of

special education for the state of NJ. And the outline of how to do

that is in the parent handbook for special education that is given to

the parents at the end of meetings with the child study team.

The signing should have been written into the IEP and if the team

felt it wasn't feasible they have to put in writing as to why. And

if they don't put it into why then that also is a due process meeting

and again that handbook will tell you what the process is.

When you meet your your teacher you need to bring the 3 code books

the (blue or green) NJ green parent handbook, parent handbook and an

addendum book.

Call the statewide parent advocacy network SPAN that is also listed

in your book. It has a toll free 1800 number because you have a real

problem. If everything is revolving around speech then yes his SLP

has a lot of input but if she is not the case manager then she can't

call the shots.

Then Cheryl added

" this is insane! " " This is interesting that they are just starting

sign now when there was an aide there who could have trained the

SLP. If sign is written into the IEP and the SLP is not proficient

in sign then she would have to go for training and here they wasted

all these years for this child. This just makes me so angry! "

=====

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Kayce, I too was nauseous to hear that your son could have had a

signing environment for the last three years. My husband, the ever

rational one, has this to say.

You need to get signing in writing, in the IEP. In our case, the

phrase was " total communication, including signs, etc. "

You need the aide on your side because she's the one who will

deliver. Don't ask her to jeopardize her job.

Make sure all your requests are in writing. If they say no, ask for

the reasons to be in writing.

Know the rules. Check out http://www.wrightslaw.com, one of the best

site for special education advocacy. If any organizations near you

bring Pete & Pam to speak, do whatever you must to attend.

You can learn signing very easily as a family by starting with the

Signing Time series. If Cody enjoys signing, he'll love Signing

Time. We (my family) are big fans of , the creator of

Signing Time; and you'll know why if you spend a little bit of time

on her website: http://www.signingtime.com.

As for us, after two years of fruitlessly asking for our son

(now 7, Dx severe apraxia, pdd-nos, adhd, dysphagia, reflux,

hypotonia, motor planning issues) to be in a signing environment, we

finally asked that they log all his signs (and we did too), and came

up with 900+ signs that uses on a regular basis. Faced with

that document, the school agreed to transfer to a school that

offers a signing environment. Actually, his new school is the home

of the deaf and hard-of-hearing programs in our county, so pretty

much all the kids and teachers/staff sign!

Most of the 900+ signs, learned through Signing Time.

Good luck! Theresa

>

> I'm not sure if anyone remembers me. It's been about a year since

> I've been on this board.

> Cody is now 7, 1st grade.

> DX. Severe Apraxia (unintelligible)

> Hyperactivity w/ impulsivity

> Motor Planning Disorder

> Mainstream 1st grade, resource room pull out reading/math (which I

> think is a huge mistake..way to easy for him).

> Okay, here are my current problems.

> 1. Everytime I have a question about Cody's school work, placement,

> homework, anything...the director/teachers all feel that they need

to

> run every thing past the SLP. For example. Cody came home with a

> packet of homework that was due at the end of the week from

resource

> room. It was way to easy, done in less than 20 minutes. I sent a

> note to the teacher asking if he can have some extra worksheets.

She

> responded with no, it's her policy..but she spoke to the SLP who

says

> he can practice speech sounds. Okay, I know that speech is a huge

> factor in my sons life, but it's not EVERYTHING. Speech sound

> practice is not HOMEWORK. I thought there was some sort of law

under

> the IDEA that says that they're not supposed to " teach " TO the

> disablity (I may not be phrasing this right).

> 2. This is Cody's FIFTH year in this school (preschool, preschool,

> preK, kindergarten, now 1st grade). Since the first day he walked

in

> the door, I've been begging fo rthem to teach him sign. I've had

> professionsls write letters that have all stated that he needs to

be

> signing. Shot down everytime. They did an aug comm eval & pushed

for

> the picture book (which he hates). I've tried to teach him sign,

but

> when you don't have the school to back you on it, it's kind of like

> hitting a brick wall all the time. The SLP has finally agreed to

add

> " some " sign to her sessions (not because she wanted to, because I

> pushed a different point that it would aide with reading).

Anyway, I

> just found out tonite that the aide that was with Cody for THREE

YEARS

> is fluent in signing (her 2 sons are deaf). She was told that she

> couldn't sign, because 'mom' didn't want Cody learning sign.

> You can just imagine how nauseas I felt at that moment. Years of

> struggling to communicate with my baby could've been (and still can

> be) so much easier.

> My husband wants me to get an attorney, but I'm not even sure how

to

> start this.

> Please help me..I didn't know who else to turn to.

>

> Many thanks.

> Kayce

> (mom to Cody 7, Sydney 7, 15)

>

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Hi , thanks.

The SLP is NOT the case manager (someone new at the school, stc I think).

I believe the IEP reflects the resource room teach being responsible

for the curriculum (they told me she's responsible for

grades/assignments).

The RR teacher told me that she would teach to the chrildren at their

" levels " . I will have to see what comes home next week (hw is only

assigned one day a week).

They never added the signing to the IEP, I sent an email to the slp &

director of special services requesting an addendum to be added to his

IEP.

They reluctantly did an aug comm eval & concluded that a pic. book

was his best way of communicating.

I have asked for sign at every meeting. I know I have dr's letters on

files saying that he should be signing (at least 3 different specialists).

>

> Questions from Cheryl VP of CHERAB

> http://cherab.org/about/cheryl.html

>

> (now I typed this as she talked and she was PISSED hearing this story

> and she's from Jersey so she talks a mile a minute but think I got

> most of what she said) Also I told Cheryl I thought you were from

> Jersey so some of her answers are directed to that:

>

> " Who is the designated case manager for this child? If it is not the

> SLP then the SLP can not give directives for classroom instruction

> work. The SLP should only be responsible for speech therapy if she

> is not the case manager. Also in the IEP the person that is

> responsible for classroom instruction should be clearly designated

> and it should be the classroom teacher.

>

> If the parent comes to the classroom teacher and the concern is about

> class work or homework the classroom teacher must sit down with the

> parent and discuss the problems about the work. The classroom

> teacher is to follow the core curriculum standards for that grade

> level unless the IEP specifically states that child is not to follow

> the core standard due to accommodations, modifications or alternate

> work...but that should be in the IEP because " you can't go along

> making up things as you go along "

>

> If the teacher and parent can not agree on this problem with the work

> then they must call the case manager to come in for a meeting. The

> teacher should be following the NJ core curriculum content

>

> If the classroom teacher and and the parent can not agree the parent

> needs to take this to mediation due process with the director of

> special education for the state of NJ. And the outline of how to do

> that is in the parent handbook for special education that is given to

> the parents at the end of meetings with the child study team.

>

> The signing should have been written into the IEP and if the team

> felt it wasn't feasible they have to put in writing as to why. And

> if they don't put it into why then that also is a due process meeting

> and again that handbook will tell you what the process is.

>

> When you meet your your teacher you need to bring the 3 code books

> the (blue or green) NJ green parent handbook, parent handbook and an

> addendum book.

>

> Call the statewide parent advocacy network SPAN that is also listed

> in your book. It has a toll free 1800 number because you have a real

> problem. If everything is revolving around speech then yes his SLP

> has a lot of input but if she is not the case manager then she can't

> call the shots.

>

> Then Cheryl added

>

> " this is insane! " " This is interesting that they are just starting

> sign now when there was an aide there who could have trained the

> SLP. If sign is written into the IEP and the SLP is not proficient

> in sign then she would have to go for training and here they wasted

> all these years for this child. This just makes me so angry! "

>

> =====

>

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Kayce I know you posted a message after this about what the one

special ed attorney said. Just to let you know I informed Cheryl of

that as well when I spoke with her today. (and for those that don't

know the shy Miss award winning teacher SLP for the state of NJ and

VP of CHERAB Cheryl -here's her page

http://cherab.org/about/cheryl.html )

Today Cheryl was driving in the car on her way home from the school.

She talked just as fast and she's still a wealth of information.

Which this grouplist came with a recorder!

Notes from Cheryl the best I could keep up with her (I researched the

links for ya!)

" I suggest you call SPAN and ask for their attorney list of special

education lawyers. In addition they offer guidance over the phone.

They will not provide an advocate but will tell what the process is

so that you can advocate for your child. Also The Education Law

Center in Newark NJ http://www.edlawcenter.org/ deals with special

education issues and has a list of attorneys.

I don't know of any special education attorney that takes cases on

contingency and they are all very expensive. Diane Autin

http://www.tapartnership.org/consultant_pool/resumes/DAutin.pdf is

the co director of SPAN and a special education attorney. "

(not sure if this helps but found this person as the Regional

Director for NJ from this same site and to everyone else in the US -

every state has a coordinator

http://www.tapartnership.org/Regions/RegionI/default.asp )

" I would call SPAN http://www.spannj.org/ and ask if she (Diane

Autin) is taking on any new private special education cases because

she's the best.

a Leib is another special education lawyer based out of New

Brunswick NJ and call her through the NJ Coalition for Inclusive

Education http://njcie.net/ it's a group that wants children that

are classified placed in the mainstream with appropriate supports.

a used to be an administrative law judge for the state of NJ.

Sussan and Greenwald in Spotswood NJ have been a great resource to

the CHERAB group http://www.special-ed-law.com/

If you can not afford a special education attorney your best bet is

to contact SPAN. SPAN is listed in the education handbook that they

received from the school. (973-642-8100) Follow the process that

SPAN gives you to fight this. SPAN has the written documents that

you can send for for a nominal fee (around 5 dollars?) for that will

guide you through the process. Very thorough. And again they will

guide you over the phone. "

(I asked Cheryl if she is willing to be an advocate but she said due

to school she doesn't have time. She said advocates charge around

200 dollars and hour or more. Perhaps if you list the county where

you live there is a parent or professional that's in this group

willing to help you for free or for a nominal fee?)

" Also The Education Law Center in Newark NJ

http://www.edlawcenter.org/ provides some special education guidance

over the phone. There is a group in Teaneck NJ " (she couldn't

remember the name but said there is a huge amount of resources in

Bergen County NJ -so when you call SPAN ask them)

(For the IEP)

" You want to make sure that the words " best practice " are in the IEP

and not the words " best method " . If you say " best method " the team

realizes that they are dealing with someone that thinks they know all

that child needs and it drives the team crazy. Best practice means

we have to try this and see if this works and if it doesn't we can

try something else. Method limits you but practice opens it up to

try different strategies until you find a method that works for that

child. You have not decided upon a method yet.

For example can insist that the best method for their apraxic child

is PROMPT and want that written as best method in the IEP. Using the

words " best method " may not open the door to other strategies which

best practices does and Prompt can be included in best practice.

PROMPT is very good but some children are tactile defensive and it's

very difficult if you can't get near the child's face. "

(About sign)

" Research has shown us that when a child is exposed to gestures along

with oral language their spoken speech improves. And ASHA has done

numerous research project of gesture language leading to verbal

output enhancement. "

That was pretty much it for now. I talked to her about the following

child with the sign language and asked her if she thought advocates

for the deaf may be able to provide advocacy for you in regards to

signing but she didn't know as much about that. As many here know I

had Tanner schooled in preschool at The Summit Speech School for the

hearing impaired. Tanner has normal hearing and SSS is an oral based

school for the hearing impaired where they recognize but don't

encourage sign. The other school for the hearing impaired would be

more of the deaf culture type school where sign is accepted as the

primary form of communication. It seems you need a bit of both -but

just something to think about.

for now here's some information on how sign benefits an apraxic child

which may help you in your fight. I know it's tough but in regards

to our children that can't speak up for themselves -someone has to

protect them.

Re: Why sign language and Montessori are awesome!

Here's the " Reasons For Sign " I promised. Anyone have any questions

about sign language let us know!

From The Late Talker book St 's Press 2003

THE CASE FOR SIGN LANGUAGE

There has been considerable debate over the merits of teaching sign

language to non-verbal children. Some parents believe that it takes

away from the primary goal of getting their child to become vocal.

Their fear is that the child will become dependent on sign language

and unmotivated to acquire speech. Most speech experts are totally

in favor of the introduction of signing as early as possible because

it helps build vocabulary, reduces frustration, and expands

expressive language. Research indicates that signing is a stepping-

stone—albeit a very important one—on the way to speech. As the

child's ability to vocalize increases, signing falls by the wayside.

The signs are not an alternative to speech, but a method of helping

the child discover speech.

Sign language can be simple or complex. Most late-talking children

develop their own sign language, which is understood by their

immediate family, and which should be encouraged so they develop

enough key signs to make their basic needs known. Carnell

told us that when her son was two-and-a-half-years-old, and

still only saying one or two words, he and his parents learned how

to sign. " He picked it up very fast and his demeanor quickly

changed. Now that he had a way to communicate he was becoming a

happy, carefree child, " she remembers. " I cried the night I walked

into his room and saw him signing in his sleep. " Beyond late talkers

there is even a growing movement to teach sign language or " symbolic

gesturing " to all babies, so they can communicate at an earlier age

than has been considered the norm.

PICTURE EXCHANGE COMMUNICATION SYSTEM (PECS)

Another non-verbal mode of communication is picture exchange in

which illustrations are used instead of words. All the child has to

do is point at a picture icon to make himself understood. At its

most simple, you put together a book of picture symbols for your

child to carry with him. You let him decide the contents. One page

can be for breakfast items, another page for lunch, one for dinner,

one for drinks and desserts, and so forth. You can have pages of

faces showing different feelings, and pages for activities such as

reading a book, going to the park or the library, visiting

relatives, friends or the doctor, and going to the bathroom!

There are many places to find pictures. Online grocery stores like

www.netgrocer.com are ideal for food items, as are the Sunday

newspaper's coupon section and magazines. You can take photos, or

purchase picture cards from a number of sources. If you wish,

laminate the pictures to protect and strengthen them; glue food and

drink choices onto self-adhesive magnets and attach to your

refrigerator. But there's more to PECS than having a picture for a

glass of orange juice. It begins with the basic lesson that to get a

favorite item the child needs to hand over a picture of that item.

The child is then taught to create simple " sentences " such as, " I

want cookie. " From there, he learns to add clarity by using

attributes such as big/little, shape, position, and color. He also

discovers how to respond to simple questions, such as, " What do you

want? " before learning how to use the pictures to comment about

things around him: " I see a train! " " I hear a bird! " Many parents

(and some professionals) share the same concern expressed about sign

language; namely, that using a picture system inhibits speech

development. But there is no evidence of a negative outcome while

there is compelling support for the proposition that PECS encourages

speech.

From The Late Talker roughs

THE CASE FOR SIGN LANGUAGE

To sign or not to sign? There has been considerable debate by some

parents over the merits of teaching sign language to their nonverbal

children. Some parents believe that it takes away from the primary

goal of getting the child to become vocal. Their fear is that the

child will become dependent on sign language and therefore not be

motivated to acquire speech. Most speech experts are totally in

favor of the introduction of signing, and as early as possible. All

of the best research indicates that signing is but a stepping-stone—

albeit a very important one—on the way to speech. As the child's

ability to vocalize increases, signing falls by the wayside. Signing

is favored for many reasons. Among the most important:

IT BUILDS VOCABULARY. An essential element of an infant's

development is realizing that he can label things in the world

around him. Most children do so by attempting to speak the word. For

children who can't speak, signing not only gives them the

opportunity to show that they know what things are called; it also

helps them to learn more.

IT REDUCES TANTRUMS. With the acquisition of signs, the child

acquires the means to communicate. He can begin to make himself

understood, significantly reducing his frustration, which had

probably expressed itself in tears and tantrums. At the same time

your frustration is also decreased.

IT EXPANDS EXPRESSIVE LANGUAGE. Signing enables the child to acquire

expressive language, even if it is not spoken language. A child who

has difficulty producing the basic sounds of speech is at a distinct

disadvantage when it comes to learning how to string words together

in meaningful and correct sentences. Using sign gives that child a

way of exploring and mastering the development of language.

IT HELPS THE LISTENER. When used in tandem with a child's attempts

at speech, signing can greatly enhance the child's chance of being

understood. For instance, if a child is able to construct a three-

word sentence in which each word is an approximation, and therefore

not properly articulated, the listener may not comprehend what is

being said. Add sign to the vocal effort, and success is virtually

guaranteed.

IT REDUCES TEASING. It is less likely that a late-talker who signs

will be teased since the listener will assume that the child is

deaf, a more familiar condition which seems to inspire more

compassion.

As far as the human brain is concerned there's probably not as much

difference as you might think between spoken and sign communication.

A recent Canadian study using positron emission tomography (PET) to

peer inside the brain made a remarkable discovery. Scientists at

McGill University in Montreal found that deaf people—when signing—

activate the same regions of the brain as speakers without a hearing

problem.

These regions, the planum temporale and the left inferior frontal

cortex, had been associated with the processing of oral language.

But in a series of tests comparing eleven people with profound

deafness and ten people with normal hearing, blood flow was measured

within the brain and was very similar. Harvard University

neuroscientist, Dr. Caplan says that the findings support the

theory that humans have a hard-wired ability to understand language,

be it spoken or visual. "

The Late Talker St 's Press 2003

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