Re:

[Guest guest]

In a message dated 6/17/99 10:26:52 AM Pacific Daylight Time,

MapaME@... writes:

<< talked to a girl who used to live in andria and she suggested you try

Waldorf MD - that you could get an efficiency for maybe $700 a week, also to

check the Marlboro area. >>

,

Waldorf will not be any closer than u are now

Terry

[Guest guest]

In a message dated 6/17/99 12:57:20 PM Pacific Daylight Time,

semesky@... writes:

<< Aah well, the things we do for our kids! >>

Good luck!

Terry

[Guest guest]

Yeah, I've got to get somewhere between Frederick and Rockville or a little

east/west of Rockville. I'm heavily considering the Gaithersburg area. I

really feel the

pressure because two out of town moms are counting on me to find them a place

too! I am considering rooming with one if the expenses are too horrible tho I'd

prefer not

to...her son is ten and has CAPD with a few sensory integration issues. The

other " boy " coming is deaf, 17. I'll have my 14 year old daughter along and I'm

not

comfortable with that scenario...the male and 17 part. She's the one who needs

a room-mate the most tho! All apartments want a minimum three month rental, but

I've

found some in the Gaithersburg area for around $800/mo unfurnished...three

months of that is better than the $2700 per month ($4900 total),

short-termrentals cost for a

seven week stay, so I'm considering renting for three months and then using the

extra time for sight seeing visits for us and for friends. Heck, we can sleep

on

sleeping bags if we have to as long as we have a place to cook and wash and

sleep that's safe, have a pool and a place for the kids to play. I'll be

looking into bed

and breakfasts and possible room rentals too. I plan to never be there, so as

long as it's safe, clean, no bugs and no smoke, we're golden! I plan on driving

down on

Saturday to check it out. Aah well, the things we do for our kids! :-)

Theathdi@... wrote:

> From: Theathdi@...

>

> In a message dated 6/17/99 10:26:52 AM Pacific Daylight Time,

> MapaME@... writes:

>

> << talked to a girl who used to live in andria and she suggested you try

> Waldorf MD - that you could get an efficiency for maybe $700 a week, also to

> check the Marlboro area. >>

> ,

> Waldorf will not be any closer than u are now

> Terry

>

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[Guest guest]

Heidi, you certainly have a big job ahead of you. You, as Devon's parent,

have the right to be in on the decision as to how he should be educated. You

say the therapists, at the IFSP meeting stated they did not know how to do

auditory training with him? You don't by any chance have that in writing or

on tape do you??

Also, your cochlear implant team should be a good resource for you. Contact

your centre and find out if they have an educational specialist on board, I

know that the centre in NY has a very good one and together you should be

able to write recommendations for your IFSP team meetings. If she is close

enough to your home town, perhaps she could attend the meeting with you?

On his IFSP plan, what mode of communication is listed for home? It idoes

not make sense to try to introduce sign if that is not what you are using at

home (but then a whole lot of this does not make sense to you, right? smile)

I am unsure as to where you are, but I am pretty certain that getting

services in Canada will be extrememly difficult unless you cover the costs

for youself. Most school districts have difficulty crossing county lines,

never mind state lines!!

Good luck, Orla

[Guest guest]

Real quick, Heidi, I think you have a case. However, if you can

identify a provider who can do the therapy as you feel s/he should, it

goes a long way. You say you found one in Canada. Well, getting a

school district to approve someone from out of state is always

difficult. Getting them to approve someone from out of the country

boggles my mind! I think that will be the biggest hurdle.

It is sometimes worthwhile to go the mediate route first. From what

you write, in your case, I think that is the case. Try mediation

first. Due process is very stressful, and invariably turns ugly. I

always say it's the last resort. There is some case law supporting A-V

therapy for CI students. Unfortunately, I really don't have the time

right now to go hunt for it. I believe it was a California case.

There is also case law against dictating communication mode.

I hope you have an attorney, or at least a good advocate to help you

with mediation. I always recommend an attorney for a due process

hearing. I am an advocate, and I won't do due process hearings, even

tho, legally, I am allowed to do so.

Good luck!

Celeste

>From: heidi_smart@...

>

>Just a little nervous about what I'm going to undertake here soon. So tell me

if you think I have a chance. I'm going to file a complaint with the State, do

the mediation thing and due process etc. to see if I can get my school to pay

for Auditory Verbal therapy for my CI son Devon. Currently he receives

" services " from a TOD who is pro-sign, anti-aural and is having a very hard time

dealing with the fact that I don't share her beliefs. She has went as far as to

go behind my back and talk to my daycare provider and the audie,slp at the

hospital where he was implanted to get them to " side " with her. She was not

successful as these people are my friends and promptly told me what she was

doing. Needless to say she has been a thorn in my side since day one. Devon

also sees an slp who has her masters degree and is registered with ASHA. Both

of these woman do not have any experience with a deaf child who has an implant

and is aural. At our last IFSP meeting they commented !

on their struggle with the audit

o

>ry training. They do not know how to approach his therapy. Within my state

there are AV therapists working in the schools but I live to far away to access

any of them and my school complains that since he is the only one here they can

not justify hiring someone since what they have on staff is adequate. If Devon

did not have an implant and was going the ASL route then I would agree with

them. However, my intention is for him to be fully mainstreamed and to not have

an interp follow him for his 12 years of school. I found an AV therapist in

Canada which is a 2 hour drive. My insurance is slow to pay and I don't hold

much faith that they will last for any length of time and since these sessions

are pricey I can't afford to continue unless I can get my school to pay for it.

So thats what I'm going to try to do. I already have a reputation in this dinky

town so I figure what the hay. Boy that didn't sound right. I mean I have a

rep as a trouble maker for the school becau!

se I won't settle for " nothing "

w

>hich is what they try to get by with. Heidi

>

>---------------------------

[Guest guest]

From: OMac353@...

at the IFSP meeting stated they did not know how to do

auditory training with him? You don't by any chance have that in writing or on

tape do you??

No, unfortunately. But I knew this was an important statement to confess so I

wrote a letter to the Special Ed director telling him that I was concerned by

Devon's teachers inability to provide adequate auditory training and suggested

they attend a AV conference that was being held during the summer. Knowing full

well they would not attend. In every IFSP we have written our wish to have him

educated by AV therapy is listed under the parent concerns section.

Also, your cochlear implant team should be a good resource for you.

They have been wonderful but they are in Iowa and I'm in Minnesota.

I am pretty certain that getting services in Canada will be extrememly

difficult unless you cover the costs

for youself. Most school districts have difficulty crossing county lines, never

mind state lines!!

Good luck, Orla

Thanks, I know my chances are slim. I was thinking I will tell them I need them

to state in a letter that they will not provide AV therapy so that I can use it

for my insurance similar to what Kay did. Maybe that will help with my insurance

and also come in handy in court. (kidding) But who knows what may happen.

Heidi

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

[Guest guest]

>There is some case law supporting A-V

> therapy for CI students. Unfortunately, I really don't have the time

> right now to go hunt for it. I believe it was a California case.

I have it Celeste (of course):

http://members.tripod.com/listenup/ruling2.htm

Eureka Union Sch. Dist./Placer County Office of Educ - The hearing officer

examined the proposed district program for the student and concluded it was

inappropriate. The district program was not designed to address the

student's need for improvement of his listening and auditory skills and

would have required him to learn a new form of communication. The district

program emphasized sign language, which the student did not need to

communicate and would possibly result in the regression of the student's

listening and speaking skills. The private program provided the student with

a FAPE, since it addressed his listening and auditory skills.

Take the link if you want to read the full report of the hearing, including

the arguments they used to support their case.

There are a couple more, but I can't give you a direct link to them. Go to

my page:

http://members.tripod.com/listenup/rights.htm

Under Laws, then Rulings, there are some from California. The directions for

getting to the specific cases are listed on the page:

Case No: 1076 - The Hearing Officer concluded that student's unique needs,

along with the unique needs of her family, include auditory-verbal therapy

and a regular education preschool setting.

Case No: 1383 and 1581 - The Hearing Officer concluded that student requires

a program that recognizes his auditory and oral skills and focuses on

developing those skills and that a DHOH class would, instead, provide

student instruction in sign language, a mode of communication the evidence

established student did not need.

Case No: 593 - The Hearing Officer concluded that a preschool class with 1:1

auditory training, 1:1 speech and language services, classroom carry-over,

and parent education--addressed student's unique needs and that a preschool

class with emphasis on the teaching and use of sign language, even though

the District identifies the class as using a total communication approach,

did not.

And just for good measure:

Case No: 894 - The Hearing Officer found that so long as the plastic slide

remains in place on the kindergarten playground and the plastic chairs

remain in the classroom, the District's placement does not meet this

three-year-old student's need to be in an environment that addresses the

physical limitations of his cochlear implant. He also found that Sign

language training for parents and extended family members did not provide

appropriate sign instruction for student's siblings, and that the student

needs to receive speech therapy, including auditory habilitation, for the

entire summer, with no more than a two-week break.

Sherry has a couple on her site:

http://home1.gte.net/sherryze/cl_ci1.htm

The hearing officer found that the evidence established that the student

needed intensive speech therapy and auditory therapy as part of her

preschool program in order for her to learn to hear and speak with the use

of the cochlear implant. He further found that the district did not

present persuasive evidence that its personnel had sufficient training and

experience educating students with cochlear implants to evaluate their needs

or design appropriate instructional programs. Most importantly, the

district's program did not include the daily one-to-one speech and language

therapy and auditory training the parents had demonstrated that the student

needed. Further, the district's program did not provide the parental

involvement that parents' experts had stressed as being a critical part of

the program. On the other hand, the hearing officer found the private

placement appropriate because its program met the student's demonstrated

needs in all respects, particularly in the provision of daily individual

speech therapy and auditory training and the involvement of parents in the

student's training. Because the district did not offer an appropriate

program and the private placement did, the hearing officer ordered the

school district to reimburse the parents for the educational costs they had

incurred and to fund that private placement for the balance of the academic

year.

http://home1.gte.net/sherryze/cl_ci2.htm

The hearing officer agreed with the parents that their son required an

educational program using an auditory/oral approach and providing, among

other things, daily intensive speech and language therapy and audiology

services to teach him listening skills. The parents presented expert

testimony establishing the likelihood of the student's success in speaking

if he were provided with those services, and the district failed to rebut

that testimony. Because the district's IEP included only limited speech and

language therapy and no audiology services, it was inappropriate. The

private preschool program, on the other hand, did offer appropriate services

designed to meet the student's unique needs and help him learn to speak.

Accordingly, the hearing officer ordered that the school district reimburse

the parents for the costs they had incurred in the private placement and

continue to fund the tuition and related educational costs at that facility

for the balance of the academic year.

Kay

[Guest guest]

How old is ?

Terry

[Guest guest]

>Right now Kara goes to BOCES, a hearing impaired school, two days a week. A

>teacher for the deaf comes to our house one day a week. A speech

>pathologist comes two days a week and on the weekends I have a student in

>speech pathology work with Kara one day.

>

>In September, Kara will go to school three days a week for two hours and the

>speech pathology at home will stay the same. Of course, we still want her

>to be a regular kid, so she will go to play group at the library on Mondays,

>Gymboree on Tuesday and church group on Fridays. I know it sounds like a

>lot, but since she is little the time she stays at any one function is not

>much more that 1 1/2 hours.

Hi Diane. We live in Long Island too. Tyler (3 yrs) was implanted at NYU in

January and this fall he will go to BOCES daily. He received OT, PT,

speech, and ToD at home. Brent (2 yrs) will be implanted Sept. 14 at Lenox

Hill and he will attend BOCES this fall 3x a week so maybe he will meet

Kara Hey you can't have too many play groups with their energy! Aside

from Brent and Ty we have DJ who is 4 and between them all I put them in

play groups and church too.

Two days ago I was mapped at Lenox for the first time and wow! What a

switch! I have worn HAs since I was 20 mos. so it is really strange yet

wonderful to hear without annoying earmolds. Yesterday when Rich was

driving the car I was looking away and commented on some bonehead driver

and Rich said " Yes he is. " I looked at him in amazement and asked " Did you

say 'Yes he is?' because I heard that!!! " Rich said " I sure did! " I know

it's just a short phrase but it was great to hear it so clearly and surely

without the tinniness of HAs. And then later on I started to pick up words

here and there. When I went back for my second mapping yesterday, I told

Amy when to stop and she said I asked for 20% louder. Everyone's voice

still sounds gravelly but I guess I'll get used to it with time My mom

is still bawling and wishes my dad were alive to experience all this. He

was the main driving force behind my mainstreaming.

Diane

[Guest guest]

At 06:47 PM 8/16/99 -0700, Schiffhauer,Steve wrote:

>

>

>

> >>You mentioned that andria has a significant speech delay, but what

> about

> >>language? Does she sign? If her only mode is speech, then I'd think that

> it's

> >>fair to say that she would also have a severe language delay. If this is

> true,

> >>and I'm assuming an awful lot at this point, then severe language delays

> are

> >>often accompanied by behaviour problems. Unless they are related to some

> other

> >>problem, then they should diminish as her language and communication

> improves.

>

> signs very little. We sign to her. Sometimes when we sign to her, she

> gets really mad at us.

> Although she gets upset, we continue to sign. Her audiologist told us she

> might do that along with closing

> her eyes or turning her back on us. We try to get her to sign, if she tries

> we praise her, if she tries to

> say something we praise her. But at this time, those experiences of her

> responding (other than putting

> her head down, turn her back or closing her eyes) are far and few. But we

> continue to try. How far do

> you go with out getting her what she needs or wants? I have tried not to

> give her what she wants until she

> responds in some manor. I am hoping her behavior will subside once she can

> communicate (I think it

> will??!!??!!).

This all sounds to me like it might be a control issue, typical with young

kids, deaf or hearing. When my 8 year old gets REALLY mad he sometimes shuts

his aids off and closes his eyes. He's a very strong communicator.

I'd keep doing just what you're doing. Communication may also come hard for

her, and she's not motivated to communicate. Does she like cookies? Don't give

her one until she signs or says " cookie " . It all sounds so Pavlovian but you

have to start somewhere. Once they realize that those waving fingers and

flapping lips will get her things she wants, it just takes off from there.

Best of luck,

Chris

<< Christofer deHahn..................Manager, EDA Systems and Test >>

<< Quantum Corporation...........Shrewsbury, Massachusetts, USA >>

[Guest guest]

In a message dated 8/20/99 4:39:08 AM Eastern Daylight Time,

dean@... writes:

<< a child may be in the normal class all the time being visited by a special

teacher occassionally or in a special needs unit attached to the school. Now

that our son is in High School we have made a very hard decision to send him

to a boarding school >>

Mark and ,

Our system is not too different. We have something called an IEP

(Individualized Education Plan) that you will hear about often. Each child's

plan is different according to their needs. Even though these plans are

regulated by law (IDEA) they are a major bone of contention since the parents

and the school system have different priorities...funding being a major

priority of the school system. Boarding school is not that common here

except in connection with the schools for the deaf. Someone else will have

to discuss that with you since lives at home and we know nothing

about them.

I am glad you are going to look into ADD. It might make a world of

difference for your child.

Eleanor

[Guest guest]

Mark and ,

Hi, this is . My son had low upper body tone and strength. He is also

hyper, has poor self control, no fear and so on and so on. I am sorry I can not

find your original post so I don't know what your question was. has

sensory intergration problems. In short he has a low vestibular system and

tactile defensiveness. Sensory issues many times get diagnosed as ADHD. If you

would like more info let me know. It is hard to find info on the web regarding

this, however it is getting more and more attention.

Hope this may help you.

Take care,

Thanks Phyllis, Eleanor & Terry for your ideas about our son that has low

upper body muscle tone (we have always thought of ADD as hypreactivity - so

maybe we need to look at this) AND to everyone else on the list it has been

great to read your concerns. We are only very new to the list (lists in

general) and finding our way - please let us know if we are doing anything not

quite correct.

I'm finding your concerns regards integration very interesting, I don't

think I put it in my original email to the list but we come from the state of

Queensland in Australia so our schooling etc is very different.

Our child has a moderate loss and has always attended a mainstream school

originally in the state system (free schools & the only thing available in our

mining town) where they offer assistance supposedly at a level requried by

individual children, depending on their needs, a child may be in the normal

class all the time being visited by a special teacher occassionally or in a

special needs unit attached to the school. Now that our son is in High School

we have made a very hard decision to send him to a boarding school approx 12

hours from home to give him the best opportunities for his future - but gee it's

hard as parents to do this. In Australia it is quite common for children to go

to boardiung school but we find it difficult as you lose that daily

control/contact BUT he does love the atmosphere and the acceptance of him as an

individual that he never received in the free school system.

If there is anyone else from Australia on the list we'd love to hear from

you.

Bye for now, keep up the excellent support you give to each other - wish we

had found the site earlier............Mark & Dean

[Guest guest]

,

I had my 5 year old (hearing son) tested for ADHD, and obsessive

conpulsive disorder a month ago. The test took about 2 hours and it was

a picture book test they had to pick out certain pictures and alot of

questions to us (parents). And a physical examination, very painless,

except for my son has a problem sitting for 5 minutes, so my the end of

the 2 hours he was in rare form. At the end of the examine, the doctor

stated he is border line ADHD and borderline obsessive conplusive

disorder, and optional defineit disorder. But they would not label him

until he was in the school setting, it has to show in school and or

daycare and in the home setting before they would actually put a label

on him. The Peds and the developmental doctor we took too,

explains that it's hard on him to be the only one for 5 years and than

have a sister that has special needs take most of his time up. We make

time for both but le does take up alot of time, but I worked prior

to having her, and now I a home. I can feel for all of you having a

child with a behavioral problem it's very frustrating in it's self, when

there is no other issue that your dealing with. I have been going to

therapy for him to learn about this disorders and try and deal with

them, along with all le's medical problems. They claim praise is

the best, when they are being good. He has calmed down a lot but I also

put him on a vitamin that is supposed to work with behavioral problems

it's called Lifeguard JR. it's some kind of dietary supplement, and let

me tell you if we skip a day or too, I know it. It's $18.00 a month and

in the beginning I thought it was expensive, and you don't see results

for about a month. But too me it's worth the $18.00 for my sanity.

Hang in there.

Colleen,

Mark & Dean wrote:

> BarbaraThe way you described your son Tom sounds exactly like our

> son, especially the part about not wanting to write and our son also

> reads like nothing - can't keep his nose out of the books. has

> been tested by a peadatric OT who diagnosed not a lack of fine motor

> skills but low muscle tone to be able to follow through and sustain

> the skills for a long period of time. I know what you mean about

> challenges some kids just seem to have to meet more than others. Our

> son's challenges seem to be never ending whereas our daughter 10yrs

> seem to just float along in life with no hiccups at all - I suppose I

> should be thankful, one child with problems is sufficient. Not knowing

> much about ADD, can anyone expalin what type of testing is

> undertaken. Thanks

[Guest guest]

Colleen,

>I also

> put him on a vitamin that is supposed to work with behavioral problems

> it's called Lifeguard JR. it's some kind of dietary supplement,

You get it from ... ? What company makes it?

Thanks

Cheryl

[Guest guest]

Just hit the reply button.

Debbie

----Original Message Follows----

Reply-To: Listen-Uponelist

To: Listen-Uponelist

Subject:

Date: Fri, 3 Sep 1999 19:06:27 +700

Hi

This is probably a really stupid question, but if I want to respond to a

post,

do I hit " reply " or do I have to start a new email? Thanks for your

patience

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

[Guest guest]

> This is probably a really stupid question, but if I want to respond to a

post,

> do I hit " reply " or do I have to start a new email? Thanks for your

patience

Either way will work. I set it up so reply will answer to the list, not the

person. Reply has the advantage of leaving the original post in the message

(and you should cut out any irrelevant parts when you do that). Everyone has

their own preferred way to do it. Whatever works best for you.

Kay

[Guest guest]

Just hit reply..then you can change the subject if you need to or leave the

one that is there.

~ and 's Mom

PS Not a stupid question at all! :-)

At 07:06 PM 9/3/99 +700, you wrote:

>

>

>Hi

>This is probably a really stupid question, but if I want to respond to a post,

>do I hit " reply " or do I have to start a new email? Thanks for your patience

>

>---------------------------

[Guest guest]

_______________________________________________________________________________

A doctor, a lawyer, a little boy and a priest were out for a

Sunday afternoon flight on a small private plane. Suddenly, the

plane developed engine trouble. In spite of the best efforts of

the pilot, the plane started to go down. Finally the pilot

grabbed a parachute, yelled to the passengers that they had

better jump, and bailed out.

Unfortunately, there were only three parachutes remaining. The

doctor grabbed one and said " I'm a doctor, I save lives, so I

must live, " and jumped out.

The lawyer then said, " I'm the smartest man in the world, I

deserve to live! " He grabbed a parachute and jumped.

The priest looked at the little boy and said, " My son, I've lived

a long and full life. You are young and have your whole life

ahead of you. Take the last parachute and live in peace. "

The little boy handed the parachute back to the priest and said,

" Not to worry, Father. The smartest man in the world just took

off with my backpack. "

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To: " 'Bayne, Wanda' " ,

" Clemson, Gerry L "

,

" Donovan, Jim R (AMEWAS) "

,

" 'Hagelgans, Josh' " ,

" 'Holtz, Charli' " ,

" Karstens, G "

,

" 'Lowry, ' " ,

" 'Lynn, Vivian' " ,

" Mozgala, Dave P (Arinc) "

,

" Shaw, Michele L (AMEWAS) "

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" Vivona, S " ,

" , M (AMEWAS) "

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[Guest guest]

> Wanted to have one more, but life suddenly got REAL complicated...

>

We'll put you down as an honorary mother of five. should count for

at least a couple of kids.

Salli

[Guest guest]

>> Not true! I know you haven't spoiled him. You have just tried to

> survive with him. It is obviously much much harder than what I have

> been through with Putter and Enrique and I know that some of what

> looks like spoiling was just surviving. Progress is better than

> surviving but sometimes survival is all you can do. No one who

> hasn't lived it can say otherwise.>>

There was definitely a period when surviving was ALL that we could

do. He was sleeping from about 3 to 5 am, and was trying to hurt

someone the rest of the time. NOTHING else happened...nothing else

could happen. Our entire family fell into a hole for a few

months...I didn't realize how much it had affected my older kids

until it was much better; would suddenly start lashing out

again (usually needed a med change), and they would all come running

to help me (he usually went after me). They didn't go to sleep at

night until they were sure I would be okay...and to this day, I will

sometimes wake from an unplanned catnap at midnight or 1 am and find

my 13 yr old daughter quietly watching so I can get some

rest...

> And I would never second-guess what you went through. Nor what he

> went through. Things are better now, I gather.>>

You know, I think now more about what went through, and still

goes through. And I worry about my other kids. It's funny, so

many " good " moms have told me that I am doing my kids an injustice by

homeschooling them, because they won't understand how to cope

with " real " life. Crud, my kids have seen more " reality " than most

kids will EVER have to deal with.

And yes, things are way better now. now tolerates brief

periods of structured therapy 6 days a week, and is much happier.

That is the thing that makes it okay for me...he's happy.

>> No one had mentioned it to you at all, huh? I guess they didn't

> want to scare you but I do find unsaid things hanging over your

> head worse. I was much more uncomfortable when everyone was

> thinking autism about Putter but

> not saying it to me. Bad as things can be it is better to give

> them a name. When you name something you sort of own it; unnamed it

> owns you.>>

I think they just couldn't name it themselves until it got to a

certain stage; and I think that sometimes people think that it is

better to leave the labels off until you can't do anything else,

especially if it is something so rare and so difficult to treat.

Medical people are taught sayings like, " If you see hoof prints,

don't start looking for zebras. " , so I think that it is just drilled

into them...expect it to be something common until you see some proof.

I do agree that it feels better just to have a label for it; before

that, I just had this terrible guilt...all the other moms around here

took their kids to the same therapists, did the same stuff, read the

same books, and their kids all got better. Mine got worse and

worse. I actually felt relieved when she said that...finally, I at

least knew what was going on.

Raena

[Guest guest]

> Medical people are taught sayings like, " If you see hoof prints,

> don't start looking for zebras. " , so I think that it is just drilled

> into them...expect it to be something common until you see some proof

THAT must be why that nitwit psychiatrist that Enrique was seeing kept

saying that I was seeing zebras with Enrique when there were really

horses...you weren't on the list then but it was when I was seeking an

Asperger dx for Enrique.

Salli

[Guest guest]

HI VERONICA!!!

<WAVING FRANTICALLY!!!>

Penny :-)

Re: I surprised myself.

Perhaps the raven is not " predicting " change.... perhaps he is reporting it.

This is huge growth for you and I am so pleased for you to feel contentment

with your life.

Your letter was very touching and I am so happy for you, Jacquie.

Smiles!

[Guest guest]

Dear Friend,

Thank you so much for your consideration.Could you send me the link please.I

would like to share it with my DR.

Many thanks

Nevin

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> > From: tiredbee2006 <Nevin.Penny@ ...>

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> > Subject: [csb-autism- rx] Seizure incident<please make a comment

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> > To: csb-autism-rx@ yahoogroups. com

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> > Date: Friday, February 12, 2010, 11:26 AM

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> > Hello list members,

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> > I live in London.My son is 16 and he had the third seizure this morning,on

the way to neurology appointment. He never had seizures before but it started

now.At the end of November he had the first one,one month later the second and

in three weeks time since then he had the third.

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> > Before the all three incidents he was constipated, I gave him Oxypowder the

night before, he also is on Mg Kirkman's ca/Mg liquid, silly marin,Glycine

taurine 500mg..B compleks and B6 (pyrodoxine for P-5P) 50mg.His body temperature

was low.

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> > At present we are waiting for an EEG.I don't know the importance to have an

EEG immediately after the seizure or later? Hospital is saying to me that after

the seizure even he has EEG,the result will be abnormal!! I don't know.

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> > They prescribed.. .ORLEPp(SF) SOdium Valproate... He has chronic

hyperventilation. Has anyone used this product before?I am in a big dilemma to

start the medicine or not?If it is preventative perhaps I should start but side

effects are worries me..

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