Hi new member

[Guest guest]

In a message dated 7/8/2004 12:00:14 PM Eastern Daylight Time, alisonporter2000@... writes:

Hi,Mother of two, My 9 year old son is battling bipolar,tourette's, adhd and several other issues including ld's. Looking for some useful information about nuero and bio feedback. Maybe some success stories and so forth. Thanks, Alison

Dear Alison,

Where do you live? We would be happy to help you and send you an Information Packet including 2 CD's that include radio interviews that review our most current programs. If you are in our area, you could certainly come in for our Free Introductory Consultation.

If not, we would be happy to refer you to someone in your area.

Cordially,

Dale

************************************************************************************************

Dale M. , M.S., C.A.C.B.,

CPPS, BCIAC-EEG-Associate Fellow,

BCIAC-Senior Fellow

Chair, PsyPhy Listserv Owner's Editorial Board

Member-At-Large, Executive Board, Northeast Regional Biofeedback Society

Member, AAPB Task Force on Marketing

Member, AAPB Committee for Insurance and Legislative Matters

Clinical/Executive Director:

Biofeedback & Alternative Medicine Centers, Inc.

New Jersey Offices in Cherry Hill (856-424-5147)

and town (856-728-7900)

Cell phone: 856-404-2565

Dale@...

BFALTMED@...

www.biofeedback.net/altmedicine

************************************************************************************************

You cannot engage in an act of kindness too soon, for you never

know how soon it will be too late. - Ralph Waldo Emerson

************************************************************************************************

[Guest guest]

Hi BJ:

Welcome! I have only been on this list for only about a year myself. It

is a great source of ideas and info. It can be overwhelming sometimes but

don't let that discourage you. My advice regarding where to start is to

identify what CFS symptoms are troubling you the most and zero in on

trying to improve them. I usually only try one or two supplements at a

time...that way I can tell more easily whether something is being

helpful. I have learned that this is very much a " journey " -albeit one I

probably wouldn't have chosen for myself!!!!!!!!!

Best Regards :-)

Teena

On Mon, 27 Feb 2006 13:24:57 -0000 " bj812201 " <mrsbjyap@...>

writes:

> Hi everyone

>

> I'm a new member of this group. I have been suffering chronic

> fatigue

> for around 6 years and am suffering depression as a result of the

> CFS.

> I am currently taking antidepressants but nothing for my CFS and I

> have joined this group to try and find out about what I can do to

> help

> me get better. I'm not quite sure where to start though so any help

> would be appreciated.

>

> Thanks for listening,

> BJ

>

>

>

>

>

>

>

>

> This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are interested

> in any treatment discussed here, please consult your doctor.

>

[Guest guest]

Hi Billie,

Welcome. Since you're from Australia, I thought I'd post about a book

that I ran into that has a cholesteatoma subject theme and is set in

Australia! Here are the details:

Personal author: *McGahan, .

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X100/XAUTHOR/McGahan,+.>*

Title: *The white earth / McGahan.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X245/XTITLE/The+white+earth+%5E2F\

>*

Publication info: *New York, NY : Soho, 2006.*

ISBN: *1569474176*

Physical description: *376 p. : maps ; 24 cm.*

General note: *Originally published: Crows Nest, NSW : & Unwin,

2004.*

Subject: *Inheritance and succession--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Inheritance+and+suc\

cession>*

Subject: *Cholesteatoma--Patients--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Cholesteatoma+Patie\

nts>*

Subject: *Fatherless families--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Fatherless+families\

>*

Subject: *Mothers and sons--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Mothers+and+sons>*

Subject: *Rural families--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Rural+families>*

Subject: *Family farms--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Family+farms>*

Subject: *Land tenure--Fiction.

</uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X650/XSUBJECT/Land+tenure>*

Subject: *Uncles--Fiction.

</uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X650/XSUBJECT/Uncles>*

Subject: *Boys--Fiction.

</uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X650/XSUBJECT/Boys>*

Subject: *Queensland--Fiction.

</uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X651/XSUBJECT/Queensland>*

I decided that I had to read it on vacation last year ... it wasn't too bad.

Matt

gypsyirel wrote:

>

> G " day i am a new memeber and i can tell you it is a relief to have

> found this website i have had ear problems since i was 2 and i am now

> 34. Im hoping to learn as much as i can and meet some new people in

> the process. Billie

>

>

--

[Guest guest]

Wow Matt, This is fascinating even to me in the US. Cool! And welcome Billie! Matt Marsteller <matthewm@...> wrote: Hi Billie,Welcome. Since you're from Australia, I thought I'd post about a book that I ran into that has a cholesteatoma subject theme and is set in Australia! Here are the details:Personal author: *McGahan, .

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X100/XAUTHOR/McGahan,+.>* Title: *The white earth / McGahan. </uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X245/XTITLE/The+white+earth+%5E2F>* Publication info: *New York, NY : Soho, 2006.*ISBN: *1569474176*Physical description: *376 p. : maps ; 24 cm.*General note: *Originally published: Crows Nest, NSW : & Unwin, 2004.*Subject: *Inheritance and succession--Fiction. </uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Inheritance+and+succession>* Subject: *Cholesteatoma--Patients--Fiction. </uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Cholesteatoma+Patients>* Subject: *Fatherless families--Fiction.

</uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Fatherless+families>* Subject: *Mothers and sons--Fiction. </uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Mothers+and+sons>* Subject: *Rural families--Fiction. </uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Rural+families>* Subject: *Family farms--Fiction. </uhtbin/cgisirsi/zWGgorUKlY/HUNT/172200011/18/X650/XSUBJECT/Family+farms>*Subject: *Land tenure--Fiction. </uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X650/XSUBJECT/Land+tenure>*Subject: *Uncles--Fiction. </uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X650/XSUBJECT/Uncles>*Subject: *Boys--Fiction.

</uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X650/XSUBJECT/Boys>*Subject: *Queensland--Fiction. </uhtbin/cgisirsi/a08NmElw4y/HUNT/172200011/18/X651/XSUBJECT/Queensland>*I decided that I had to read it on vacation last year ... it wasn't too bad.Mattgypsyirel wrote:>> G"day i am a new memeber and i can tell you it is a relief to have> found this website i have had ear problems since i was 2 and i am now> 34. Im hoping to learn as much as i can and meet some new people in> the process. Billie>> --

[Guest guest]

Hi Billie,

I'm an aussie as well.You can learn heaps from this site.Our 11 year

old son has had a cholesteatoma x2 and had 11 ops so this site has

helped me understand and cope with it.ask questions you may not always

get an answer but someone will give feed back thats what I like.

Good luck with it.

Viv

>

> G " day i am a new memeber and i can tell you it is a relief to have

> found this website i have had ear problems since i was 2 and i am now

> 34. Im hoping to learn as much as i can and meet some new people in

> the process. Billie

>

[Guest guest]

Dosing might be hard to compare. I take 10mg but because I drag myself through

the day just went back to 5 with Wellbutrin added. I have the anxiety under

control somewhat, depression is not too bad.

beatch38 <beatch38@...> wrote: Hello, I am a new member, I have

been taking Lexapro for months now, I

started out with 10 mg. and now take 20 mg. I take it in the morning.

I have no probelm sleeping either day or night. But I am also on other

meds. Thank goodness I haven't experience the rls with the meds I am

taking. I have had this before when I took tylenol nighttime pills.

And some other med. gave me rls but I dont' recall which it was. My

moods are fairly stable now compared to what they were. I can't say

I'm not depressed but the crying jags have stopped. I am curious of

what dosage others are taking. I am not a small person. For my size I

think it may be a low dose?

Thank you for any feedback.

[Guest guest]

Welcome to the group. I'm Colleen from Minnesota, age 57, and have been on 10 mg

Lexapro, which I take in the morning, for about six months now. It is helping

me; no more crying jags and not so much bad temper. My son notices a big

difference. The bad thing is that now, if he does something to tick me off and I

call him on it, he says, " Didn't you take your meds? "

Colleen

beatch38 <beatch38@...> wrote:

Hello, I am a new member, I have been taking Lexapro for months now, I

started out with 10 mg. and now take 20 mg. I take it in the morning.

I have no probelm sleeping either day or night. But I am also on other

meds. Thank goodness I haven't experience the rls with the meds I am

taking. I have had this before when I took tylenol nighttime pills.

And some other med. gave me rls but I dont' recall which it was. My

moods are fairly stable now compared to what they were. I can't say

I'm not depressed but the crying jags have stopped. I am curious of

what dosage others are taking. I am not a small person. For my size I

think it may be a low dose?

Thank you for any feedback.

[Guest guest]

Welcome to the group. I have been on Lex for 3 weeks. I am on 20 mg.

It has helped with my depression but made my RLS really bad.

>

> Hello, I am a new member, I have been taking Lexapro for months now,

I

> started out with 10 mg. and now take 20 mg. I take it in the morning.

> I have no probelm sleeping either day or night. But I am also on

other

> meds. Thank goodness I haven't experience the rls with the meds I am

> taking. I have had this before when I took tylenol nighttime pills.

> And some other med. gave me rls but I dont' recall which it was. My

> moods are fairly stable now compared to what they were. I can't say

> I'm not depressed but the crying jags have stopped. I am curious of

> what dosage others are taking. I am not a small person. For my size I

> think it may be a low dose?

> Thank you for any feedback.

>

[Guest guest]

> >

> > Hello, I am a new member, I have been taking Lexapro for months

now,

> I

> > started out with 10 mg. and now take 20 mg. I take it in the

morning.

> > I have no probelm sleeping either day or night. But I am also on

> other

> > meds. Thank goodness I haven't experience the rls with the meds

I am

> > taking. I have had this before when I took tylenol nighttime

pills.

> > And some other med. gave me rls but I dont' recall which it was.

My

> > moods are fairly stable now compared to what they were. I can't

say

> > I'm not depressed but the crying jags have stopped. I am curious

of

> > what dosage others are taking. I am not a small person. For my

size I

> > think it may be a low dose?

> > Thank you for any feedback.

> >

>

ew, sorry about your rls, have you talked to the doctor, I couldn't

handle luckily im not having that probelm.

[Guest guest]

Yes hon, I am a self medicated CFS sufferer, welcome to the forum x

Dawnx

---

> as you can imagin its a nightmare cross referancing meds and diets

> but i think im there now its based over 6 months with different

> parts of my plan starting at different times after 6months i plan to

> go private to look at viral bacteria or paracite problems(dr andy

> wright)

>

> i know my g.p and prob leeds cfs will think im mad but im not

> waiting another yr or maybe 2 yrs to see very little improvement

>

>

> has anyone else self medicated?

>

[Guest guest]

Hi,

I'm new here too. I just wanted to say I know what you mean about

cross referencing diets. Some diets say carbs will boost your

serotonin and others say low-carb is best. I get confused.

I also wanted to say that so far for me they thyroid medication has

been the best thing for my 'anxiety'. I would feel my heart pounding

and not feel especially anxious mentally. When I started thyroxine it

went away. It came back when my TSH jumped up after an illness but now

I have increased my thyroxine it has gone away again.

Three years of therapy didn't affect my feeling of my heart pounding

at all - I always thought it was a bit strange when it was diagnosed

as 'panic attacks' and I wasn't actually panicking about anything... I

love my therapy though, don't get me wrong

I am also taking the Nutri Adreanal Extra and I think they might be

helping. Its still too early to say as I have only taken them for a

couple of days but I am going to continue.

Have you seen this by the way? I am going to try some VegEPA.

https://www.thevegepaformescheme.com/index.php

Jane

[Guest guest]

Hi and welcome

If you have a parasite problem I recommend www.humaworm.com

This is a 3rd generation Herbalists small american company and the

herbs are organic fresh ground.

jennyfreeman

>

> hi i was recommended this site and have had a good look through all

> the useful info(fantastic)

> ive been ill for 4 yrs i think it cane on slowly i noticed an

> intollerance to sun and heat, i kept feeling faint couldnt drink

> alcohol.

>

[Guest guest]

Welcome to our forum and I hope you get the help and support you need here. Can you tell us what to call you please.

What I can't understand is, if your doctor diagnosed you as suffering from hypothyroidism, why didn't he give you L-thyroxine therapy. If you have a diagnosis of hypothyroidism, are you aware that you are entitled to free prescriptions for everything. Why did your GP refuse to refer you, so you had to see a doctor privately? Many illnesses such as CFS, FM, ME are diagnosed when a doctor doesn't know what to do because your thyroid function tests are within the normal range. Thyroid hormone replacement therapy is often used to help these conditions, mainly because the condition in the first place is undiagnosed hypothyroidism.

Write down a list of your symptoms and signs (I have just written this to two other members). You can check your symptoms against the symptoms and signs in our website www.tpa-uk.or.guk. Take your basal temperature before getting out of bed every morning for 5 days. Add these temperatures to the list. Normal temperature is 98.,4 degrees F. If your temperature is 97,8 or less (and it could be much less if you are hypothyroid) this means your metabolism isn't functioning as it should. Get a FULL thyroid function test which includes TSH, Free T4, Free T3 and your GP MUST test to see if you have antibodies to your thyroid, especially as you say you already have an autoimmune problem. If you do have antibodies, they see your thyroid as the enemy, and set about its destruction. the more your thyroid is destroyed, the less thyroid hormone it is able to put out. Blood tests are NOT sufficient to get a diagnosis, you should have a thorough clinical examination, you should be asked about your family history, you should have your Achilles Tendon reflex tested (a slow reaction is SPECIFIC to hypothyroidism. Write down the questions you need answers to (keep a copy of this at home). Don't let the GP get away with not giving you the answers you need. If possible, take somebody with you next time you see him, and have a pen and paper poised to take down any notes. If he sees you are serious, then he might take a more serious look at things. Tell him, if he still refuses to give you a referral that you know normal blood results are insufficient to reach a diagnosis and you must see somebody who specialises in thyroid disorders, and that you will need to seek help from elsewhere. You can always contact your local PALS.

Have they tested your cholesterol and also you need your ferritin level (stored iron) tested to see if this is low. Read as much as you can from our Files and website. Ask loads of questions, somebody will try to give you some answers.

There is light at the end of the tunnel - it might take a little getting there, but we will try to help all we can.

Luv - Sheila

as you can imagin its a nightmare cross referancing meds and diets but i think im there now its based over 6 months with different parts of my plan starting at different times after 6months i plan to go private to look at viral bacteria or paracite problems(dr andy wright)i know my g.p and prob leeds cfs will think im mad but im not waiting another yr or maybe 2 yrs to see very little improvementhas anyone else self medicated?

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 269.23.8/1415 - Release Date: 05/05/2008 06:01

[Guest guest]

thanks for replies and thank you shiela for all the info

my original dr prescribed thyroxine at 25mg my tsh levels increased

so he went up to 50 then 100 and it finally came within range after

two yrs at a check up it was high again but my new gp said hers was

higher than mine and she was fine!

that was when i asked for the referal and got refused and had to go

private, dr at huddersfield(great if anyone

is looking for one) increased my dose to 150

my gp keeps trying to insist i reduce

it but im going off my health as well as blood test

i think my b12 and ferritin are low but the gp wont retest i was

only just in range in last tests a yr ago

its a bit rum when you have to treat yourself isnt it! thank

goodness for sites like this and the internet

>

> What I can't understand is, if your doctor diagnosed you as

suffering from hypothyroidism, why didn't he give you L-thyroxine

therapy. If you have a diagnosis of hypothyroidism, are you aware

that you are entitled to free prescriptions for everything. Why did

your GP refuse to refer you, so you had to see a doctor privately?

[Guest guest]

Hi

I have a 5yr old daughter Alyssa. She has been dx:Severe verbal

apraxia,pdd-nos. She has little to no speech she can say mama abby and

baby clearly,maaa for map,pa for pop and awaw for dada,she babbles as

though she is talking but it doesnt seem to make anywords . She has

sensory problems i.e.dislikes certain noises,crowds, she is unfocused

and has anxiety.She is very friendly and affectionate although at times

she can have a fit for no reason fitting her self and yelling.She is

hypotonic waist up and a little hypertonic in the legs but the docs say

no to CP.

She has recieved OT PT and speech since 6months and then SE

preschool and will start SE kindergarden in a couple wks. This summer

we purchased a spring broad lite augmentive device, she is working on

but as of now it is all activity driven. I had a nonverbal pictorial IQ

test down she scored a 79 (which proves to the school she is not MR)

We also tried Prompt therapy it did nothing.She is no low dose

risperdol .5mls 2xday for aggression and anxiety.

We have done genetic testing and had a MRI both neg. for any

abnormalites.

Just looking for any advice and info?

She gets OT 2x in school PT 1x and Speech 3 indiv. and 1 small group

the school will not give 4 indiv. absolutly refuse..they dont have the

staff this is because I will not allow in school therapist to service

her, they have a therapist come in to school for Alyssa.

OUTside of school she has OT and Speech each once a wk during school

and in summer each 2x a week.

Currently I am in NC getting Hyperbaric oxygen teatments for both of my

children.

WWW.freewebs.com/abigailmcnamara

[Guest guest]

Hi and welcome!

I know as a parent that you are probably both excited and nervous

about kindergarten starting in a few weeks. Please do some research

on this after reading the following message and as ie Goes to

Hollywood says -relax don't do it. Your daughter is only 5 and

essentially nonverbal with other strong issues too.

She still requires intensive and probably

daily therapy and we'll have to get you caught up in this group as to

what she's had so far since she should be further along by now.

Kindergarten will probably be fine for her -but the issue is her

starting and staying in the mainstream for 1st grade up. There is a

huge difference between kindergarten and first. Nobody will send you

the memo over the summer between the 2 grades but somehow in first

grade she'll be expected to be reading and writing and sitting up at

her desk for longer periods of time writing with a pencil (she

probably has both low tone and fine motor issues that still need to

be addressed.) If you know how to check the archives here please do

and you'll find no complaints from anyone who started their verbal

disabled child at 6 in kindergarten -but time after time issues for

those that started them at 5. Not to say that there are not any who

started their child at 5 with no issues. Donna is one that comes to

mind -anyone else? (it really is just one or two) Tricia Morin has

a few interesting messages here because her husband pushed for their

son to start in kindergarten even though she is a moderator here and

knows what I'm saying is true. There are a few nightmare posts and

not to freak you out but pretty bad. The happy ending is that he was

pulled out of the kindergarten and placed in an appropriate

multisensory enriched prekindergarten class until 6 and has since

gone on to be a golden child in school. Here is a story about

Tricia's son written by the (then) President of the Missouri Speech

Language Association

http://www.cherab.org/information/silentnomore.html

Also keep in mind the following archive shows the research about the

stark negative issues for those children retained in kindergarten

(which is what they'll do for those children that are not ready to

transition to first) Most children in this group are very bright

that has nothing to do with it. It's a positive thing to have a

child skip a grade -you can always do that down the road (but

probably won't)

It's not to late -you have weeks to reopen the IEP Just send a

letter certified to your child's school that says to the effect

" Even though I signed off on the IEP I am allowed to revisit the IEP

to present new documentation that will enhance my son's educational

program " Present some of the following information and of course

have your child's ST and MD documentation to back this up.

There's still time -please let her stay in preschool one more year!

Archive from Tricia and then an even longer one below that.

(but all say the same thing -relax don't do it!!

Re: holding back kindergarden

This topic is near and dear to my heart because of '

experience. So forgive me if I come off strong. Forgive me for

retelling this story for those of you who have heard it a million

times.

At the beginning of this year, we were trying to figure out what to

do with ' placement. He has a late birthday. The school

assured me that kindergarten was the way to go since *cognitively*

he was ready. They assured me that the it was a Montessori-style

class so he wouldn't feel pushed, etc. Blah, Blah, blah!

A good family friend from Wisconsin (who has a special needs child

who is now 40, went back to school to be a school psychologist and

has been practicing as a school psych for years) sat on the phone

with me this past summer and told me that it was my decision but she

wanted to strongly encourage me to keep in preschool another

year. Especially for kids whose neurological systems are immature,

why not give them extra time to get up to speed on their social

skills, attention skills, endurance, etc. She made the mistake of

putting her son in kindergarten at 5 years of age because the school

said he was so tall that he really needed to be in kindergarten.

She followed the school's advice and has regretted it ever since.

Despite her advice, I gave into pressure from my husband and the

school who all assured me that needed to be challenged and

he would be bored repeating pre-K.

was put into a mainstream kindergarten class. He started

coming home depressed from school every day. He never wanted to talk

about his day. He had some friends at the beginning of the year but

the " friends " soon were saying mean things to him and he felt

socially isolated. He was so immature compared to them. Then the

situation exploded! I found out that (starting in late November) the

teacher was using an adaptive chair as a time out for my son's

refusal to complete fine motor tasks and for not staying seated. I

think the teacher had tried everything she could to get to

adapt to the kindergarten class and got frustrated. That is no

excuse for the abuse however. Yes, this teacher is an exception (at

least we hope!) but the point here is that my son wasn't ready to

function in a K classroom. It was a full-day program which makes a

big difference also I think. He got so tired by the afternoon.

During his 4 months in his K class, he hated life and really did not

learn anything. I thought it was just because he had learning

difficulties.

When we switched him to a mainstream Pre-K, he was like a new kid.

He loved school and had friends. The funny thing is that he learned

more in his first 4 weeks of pre-K than in his 4 months in

kindergarten. I think this is because he felt comfortable enough to

explore and learn there. He is now sight reading and starting to

decode words. he knows all his letter and corresponding letter

sounds. He knows all the continents and can tell you something

about each one. He is writing words and is starting to love to

write and draw. At our first parent-teacher conference with his pre-

K teacher, she talked about how he is one of her top students. She

can give him an assignment and walk away and he just does it. I

asked if had been upducted by aliens. If you compared

the progress notes from his Kindergarten teacher and the ones from

his pre-K teacher, you would think they were talking about different

children. It is just astonishing to see how differently

responded to the two environments.

I hate that had to go through what he did in order to get

back to preschool. However, I am grateful that it worked out the

way it did. He will be able to start kindergarten next year on top

of his game. He will already be reading and writing and will

socially be part of the group. He has always felt like he was behind

everyone else and he hates it. His deficits drive him to try harder

but he needs a comfortable environment to develop. He felt too self-

conscious on kindergarten because he felt like he did not fit in.

My advice is if there is even a grain of doubt, I would hold a child

back. The benefits of holding a child back could be numerous, the

draw backs...are there any? On the other hand the costs of starting

a child at age 5 can be great for a child who has an immature

neurological system anyway. In our case, the benefits of starting

at age 5 in kindergarten were none...it was disastrous!

Sorry this is so long and much of it is a repeat.

Tricia Morin

North Carolina

Re: Holding back in Kindergarten

Checked the photo and he's adorable! When were you guys at Hollywood

Studios?!! We go pretty often (were just there the day before

yesterday)

Since you work in the school you have the advantage of knowing what

is expected -but I can tell you don't underestimate the positive

power of peer pressure in pushing him into 1st if he's ready and you

just don't know it yet. He may be able to keep up with much more

than you or anyone else believes he can -I know my son sure did as he

was night and day from how he tested in the public school who did

bogus testing and never expected much of him (they thought he

wouldn't " make it " in a mainstream kindergarten class and needed

a " self contained learning disabled kindergarten placement " but we

advocated for him and got him placed in the mainstream where he

was " one of the top students " and by 1st grade was placed in an

accelerated academics placement which shocked everyone but he was

straight A). Sorry to say this but he even surpassed what I expected

of him -so again don't underestimate because as parents we can be

wrong too.

So how old is Trevor now and what age will he be when school starts?

Did you wait until 6 years old to start him in kindergarten or did

you start him at 5? If you started him at 6 in kindergarten I'd give

him that chance to go into the 1st grade. He knows all his friends

will be there and it's tough on them to be held back -they know even

in kindergarten. If you started kindergarten at 5 and didn't wait

that extra year for sure he probably does need that extra year of

therapy and developmental time.

It's too late to go back if you started kindergarten at 5 and not 6 -

but not too late to trick everyone by switching schools for a year!

Is there a way you can put Trevor into a different school vs. having

him repeat kindergarten? By putting him into a different school

(if possible) for the year it should help eliminate any negative

feelings as there is research it's better to wait to start

kindergarten then to hold them back " When Children Aren't Ready for

Kindergarten " published by H. Holloway

" researchers discovered that children who repeated

kindergarten were doing worse than their younger classmates on most

school performance indicators by 1st or 2nd grade. For instance, two-

thirds of the retained students had received some negative feedback

from teachers compared with less than half of the nonretained

students. The retained students were also much more likely to have

problems concentrating, to perform below their capabilities, and to

act up and disrupt the class. Zill, Loomis, and West concluded that

repeating kindergarten had not helped those children and may have

actually made matters worse. "

There's a list of possible reasons why and I have that below. The

goal is to get and keep your child in the mainstream from K -12.

Most of us in this group have done this by starting our kids in

kindergarten at 6 vs. 5- there are a handful that started their child

at 5 in kindergarten that report their child was doing well -but most

ended up in special needs placement in the grades after kindergarten.

Here's an archive from 2005 and before:

From: " kiddietalk " <kiddietalk@...>

Date: Mon Aug 15, 2005 2:36 pm

Subject: Re: question about kindergarten kiddietalk

Dear Archana,

Below are some archives that will help answer your question. In a

nutshell your child is entitled to continue preschool until 6 if the

IEP team deems that to be appropriate. Appropriate as you can

imagine is far too tangible a word in something as important as

decisions for what is or is not " most appropriate " for your child's

education. They may say throwing an essentially nonverbal 5 year

old child who still needs tons of therapies into kindergarten as

" most appropriate "

Fortunately, you and your husband are part of that IEP team to make

that decision and you can share outside information to support your

stand...such as private evals and opinions,

and all of the following which has helped others. I'd

also suggest showing up with a copy of The Late Talker. All the

stories from The Late Talker are from this group and printed with

permission from the families. Oh, and let them know we are working

on the next book and that we may be interviewing you!

If your public school can no longer provide appropriate preschool

placement until your child is 6, they will need to provide out of

district preschool placement. You would be amazed what they find

they can do when they are confronted with that option.

Share the study posted below about the reasons to delay kindergarten

vs. retaining. If you need help you can call me at 772 335 5135.

(Jersey line to still reach me at even though we are now in

Florida!) Hope the following helps!

From: " kiddietalk " <kiddietalk@...>

Date: Sun Dec 14, 2003 10:56 am

Subject: Re: Waiting on Kindergarten/long (even for me!) answer

Hi !

Tanner was in out of district placement at the Summit Speech School

for the hearing impaired/deaf which was a preschool placement that

went up to six years old http://www.oraldeafed.org/schools/summit/

I'm not sure what happens with in district placement from State to

State -or country to country. I can however share my experience

with this:

Tanner at five was still not able to hold a pencil correctly nor was

he good at imitating circles etc. He would work hard -he's always

been a child that wants to do what others tell him to do. Due to

motor planning and weakness problems however -he still needed OT.

His speech was much improved by five -but he spoke like a baby. Put

it this way -Becca -the child who just turned three speaks far more

and far more articulate than Tanner was at five. Tanner was

developmentally slow on speech and language development. Another

theory of mine is that our children do NOT have the diagnosis of

speech language impairment -but they appear to have that when they

developmentally go through that stage. (this is the stage where

they are doing sentences -but mix up syntax -etc.) Just like the

stuttering stage can last longer and happen much later -with apraxic

children not enough studies have gone into what is " normal " for

them. So again -don't want them to be inappropriately labeled. At

five Tanner was still in intensive therapy -and needed that extra

year of intensive therapy for speech and occupational therapy. He

was only in a half a day program -and by the time he came home on

the 15 minute bus ride -he would fall asleep on the bus. I'd have

to wake him up and then he would come in and nap more. Tanner

needed much more sleep than other five year olds.

When it was time for IEP -I was told not to have him evaluated -

there was a chance that he was doing well enough that he wouldn't

qualify for continued out of district placement until six. What

happened then was that both my town school and Summit Speech School

professionals both agreed that it was most appropriate to keep

Tanner in preschool until six. Here is my favorite part of the

story from the archives : " Funny story is that

Tanner's case manager at Tanner's five year old IEP meeting said " In

our town we like to start five year olds in Kindergarten " I

actually laughed when she said that (couldn't help it) and said " Our

town? I live in this town and was a Kindergarten classroom mom for

Dakota who I started at five year olds and he and Molly ___ were

just about the only two five year olds in the entire Kindergarten

class -so suggesting to start special needs speech impaired apraxic

children at five when all the quote unquote normal kids don't start

till six is not the best idea to say the least! "

Needless to say -our town paid for Tanner to continue in his " out of

district " placement at the Summit Speech School in New Providence NJ

till six. We withheld testing which I was advised we could do -

since he would have " tested out of the program " So in fact your

town could pay for in district or out of district preschool

placement from five to six years old if you and the child study team

agree that will be best to wait till six. Keep in mind that apraxic

children take a bit longer at times to do what comes naturally to

other children -and in time they can perhaps blend in with others

with no damage to self esteem from teasing etc. I heard that in NJ

a child doesn't legally have to begin Kindergarten till seven -not

sure but anyone could check that out for their state/area. So don't

rule out paid preschool after five years old as an option...if that

is what is appropriate for your child. "

Bottom line is both the school system and you are looking for the

best way to get your child succeeding in the mainstream with as few

services as possible and as quickly as possible.

Here are some archives to answer more. Since there are a number -

and this is just the most recent -it's long and some may be

repeating but I don't have time to clean up. So if this isn't a

concern -just delete! )

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

Check with other parents in your town if this is your first child to

find out what age most other parents in your town start their

children in Kindergarten. I started my son Dakota at five years old

for Kindergarten in the Warren/Berkeley Heights/Basking Ridge area

of NJ where we used to live -and he was one of the two five year

olds in the class. Most parents in our upper middle class town

didn't start their children until six for competitive sports and

academics reasons -so starting my " suspected ADHD late talker " five

year old Dakota in Kindergarten we saw as a mistake -and one we

could never fix.

Dakota was too bright to be left back once he started -socially he

was not as mature as his classmates however -but he became friends

with his class mates regardless -so repeating is something Dakota

didn't want.

What I didn't at all like was that each day the teachers had to keep

yelling over and over " Dakota... " fill in the blank - " do this or

don't do that or sit down or be quiet or pay attention " etc.

So not starting Tanner in Kindergarten at five was not even a

thought when we lived in NJ. Why put a double whammy on the kid and

start him at five when most of his classmates will be six -and in

some cases -already reading and writing!! Funny story is that

Tanner's case manager at Tanner's five year old IEP meeting said " In

our town we like to start five year olds in Kindergarten " I

actually laughed when she said that (couldn't help it) and said " Our

town? I live in this town and was a Kindergarten classroom mom for

Dakota who I started at five year olds and he and Molly ___ were

just about the only two five year olds in the entire Kindergarten

class -so suggesting to start special needs speech impaired apraxic

children at five when all the quote unquote normal kids don't start

till six is not the best idea to say the least! "

Needless to say -our town paid for Tanner to continue in his " out of

district " placement at the Summit Speech School in New Providence NJ

till six. We withheld testing which I was advised we could do -

since he would have " tested out of the program " So in fact your

town could pay for in district or out of district preschool

placement from five to six years old if you and the child study team

agree that will be best to wait till six. Keep in mind that apraxic

children take a bit longer at times to do what comes naturally to

other children -and in time they can perhaps blend in with others

with no damage to self esteem from teasing etc. I heard that in NJ

a child doesn't legally have to begin Kindergarten till seven -not

sure but anyone could check that out for their state/area. So don't

rule out paid preschool after five years old as an option...if that

is what is appropriate for your child.

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

Jola,

As always it's yours and your husband's decision on what age to

start a speech impaired child in kindergarten.

Keep in mind the following however.

Your child's school said some pretty horrible things. Sorry isn't

enough -what is the track record of this school district with verbal

impaired children?

What age does the average parent in your town start children in

kindergarten? Where I used to live in Warren NJ -the average age

was 6. (Warren is a more affluent/higher educated area -parents do

this for academic and athletic reasons for all children)

Kindergarten is not the grade to determine readiness -it's first

grade and beyond. You want your child (I'm guessing) to be

mainstreamed like the other kids K-12 -so you want to give him the

best chance to be in the mainstream.

Does your son still need speech therapy? How much time and energy

will be spent on that vs. learning to read and write and do math

etc. at 5 years old? Those of us however that start our children at

6 in kindergarten -we have that one extra year of therapy and

developmental time-in preschool without pressure..

Does your son need any occupational therapy? Can he sit upright and

how good is he at holding a pencil? By first grade he will be

expected to sit upright in a chair and hold a pencil and write for

longer periods of time then those children with hypotonia can do at

just 6 years old without prior therapy. Those of us however that

start our children at 6 in kindergarten -we have that one extra year

of therapy and developmental time at 5 -in preschool without

pressure.

Does kindergarten have as your husband believes " the challenge of

the other regular kids who he can emulate " ?

Does your child have just a simple delay in speech? Even then -he

could pick up speech from you and your husband -and from a regular

preschool placement.

This isn't a choice of kindergarten or not. The choice is 5 vs. 6

years old to

start? Frustration vs. encouragement? Which would happen?

If a child has a simple delay in speech -being thrown into a

situation with other children is a great way to get them talking.

Doesn't work like that for apraxia -some become more frustrated.

They don't just start talking. As far as more intensive therapy in

kindergarten? Why isn't your child getting that now if he's

entitled to it? In fact -my son Tanner had the most intensive years

of speech therapy ever during his preschool years. To me that's the

best time to do it -not in school years. By the time Tanner started

kindergarten at 6 he only needed 3 days a week of speech therapy -

not 5, and only 2 days a week of occupational therapy -not 3.

http://www.cherab.org/information/familiesrelate/letter.html

If your child isn't receiving intensive therapy now (and it's in his

IEP he will get that in kindergarten!!) -then that needs to be

addressed with the IEP team when you contact them to let them know

you want to reopen the IEP to hold off kindergarten till 6 -enroll

him in an appropriate multisensory preschool where he can get an

extra year of the intensive therapy they wanted to give him while he

was learning what he needed to learn in kindergarten. Getting him

up to speed by kindergarten is the goal.

Please search the archives for 'anyone' who complained about

starting a " late talker " child at 6 in kindergarten (none) vs. the

many who have problems that started their child at 5. If you do

start your child at 5 regardless as some do for the same reason you

state -the dad wants that -hope as well that your child is then one

of the few as reported here that does do well regardless ....after

kindergarten.

Again -kindergarten shouldn't be much different then a really good

multisensory preschool. Some preschools in fact can be more

advanced then some kindergarten classes!

Please read this again -and please feel free to take this entire

letter to your IEP team -they can contact me if they have questions

772 335 5135. The proof is in the pudding. If they want to save

money -they'll do the right thing and let your child have one more

year of preschool and therapy to get up to speed now for

kindergarten at 6.

In the PreK class she would/should continue to get the services she

needs/all of them that are needed and suggested as options you state

for

kindergarten, and concentrate on getting up to speed while again

giving her an extra year of development as well.

Please don't get caught up in the 'want her to be challenged'

thing. Learning how to talk/ overcoming motor planning impairments

and behavioral issues are all challenging and important issues that

you still do have time to work on before she starts her 'real'

academic career. Try working on those issues with a 7 year old or

older child while she is trying to be like the rest and keep up with

her peers on real school work -not finger painting!

Kindergarten again just is not much more challenging than a really

good multisensory preschool/preK -perhaps switch to another

class/school if the one your child is in is not appropriate for your

child's needs. Both a good preschool and then kindergarten are

there to give children a solid base and love of learning if done

well. And if done well it's only got to be done once. And..again -

you don't want to repeat kindergarten unless 100% necessary. If any

question that she will have to repeat a grade -hold back to start at

6 vs. 5. Why? Below is just one research study. And again -if

anyone knows any downside to starting a child at 6 -please do tell

us and the internet why -since right now it's unknown.

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

From: " kiddietalk " <kiddietalk@...>

Date: Wed Jan 7, 2004 8:58 pm

Subject: Re: Finally!!! (no wait -really) kiddietalk

Hi Dena,

One point that was missed is the option of not starting your child

in kindergarten until she turns six -which I highly suggest you

explore. Did I say highly -based on what you wrote below I'd say

delay unless you have a good reason to start at five. And

the spec. ed small class vs. mainstream large class is just theory -

not real world 'students rise to the level of expectations'. If you

think kindergarten is coming up fast -first grade comes up just as

fast and much more is expected, sitting at a desk, reading, writing,

math, science...it's not just getting ready for school anymore like

kindergarten -it's school.

Unless you want your child to stay in special ed -chances are based

on how much more is expected in first grade for work and

independence -if he or she is not able to make it in the mainstream

class in kindergarten -then by first he or she 'may' be ready for

mainstream first -but odds are... Well -you all know my opinion -

now for the stats -look at the research and more in these archives

below (and search the archives -much more there on this topic) The

first one was in response to a parent that had a school that would

keep the child back to repeat if they were not ready for first...and

this parent appeared to think this would be better than another year

of a good multisensory preschool like hearing impaired schools or

others posted about here (which is different than just " normal "

preschools which as reported here may or may not be a good thing for

a child with a moderate to severe delay in speech for self esteem

and frustration reasons to just name two of the negatives posted

here):

" Unlike preschool -which not one of those children ended up in the

same school -all of the kids Dakota and Tanner went to kindergarten

with -as a group went on to first grade together -etc. Perhaps we

were different in that we were very involved with the school -and the

other families -and Dakota and Tanner became really good friends

with some others. Since we've moved -Dakota and some of his friends

from NJ are still " best friends " that now only see each other once

in a while and mostly just talk on the phone -but still close.

From what I read however -once you start a child -holding them back

is not a good thing. Of course those you know may be different than

what research (and I) have found. Some people like I say -need to

learn the hard way. And I can tell you for a fact that whether a

child is able to say it or not -staying back when all your friends

move on is not good. Children who have parents that delay entry

I've just read do better than those who have to stay back and

repeat. Why? Funny I didn't read this till now but look at just

these two possible reasons:

Parents who choose to delay their children's school entry may have a

higher level of awareness and involvement.

The stigmatizing effect of being required to repeat a grade may harm

children's academic progress.

May want to read this and argue with the research -I'm only stating

what I found -and I stick to it. I'll even go as far as saying now

in almost all cases -don't start a child with apraxia, motor

planning delays, DSI, and any other delays in kindergarten at 5 -

start them at 6. (especially without a doubt for those of you with

children like mine with summer birthdays!!!)

" Research Link / When Children Aren't Ready for Kindergarten

H. Holloway

How can schools promote the achievement of children who are old

enough to enroll in kindergarten but who are not developmentally

ready to succeed? Two approaches that parents and schools commonly

use are delaying the child's entry into kindergarten and retaining

the child in kindergarten for an extra year.

Giving children an extra year, whether through delayed entry or

kindergarten retention, makes sense in view of the ample research

suggesting that the youngest children tend to lag behind their

classmates. West, Denton, and Reaney (2000) found that in the spring

of their kindergarten year, younger children had lower reading and

mathematics knowledge and skills on average than did their older

counterparts. These researchers also found that older kindergartners

were more likely to persist at tasks, more eager to learn, and

better able to pay attention.

Delayed Entry Versus Kindergarten Retention

To avoid the disadvantage suffered by younger students, some parents

choose to delay the entry of their children into kindergarten. Zill,

Loomis, and West (1997) found that children whose kindergarten entry

was delayed so that they started kindergarten when they were older

performed better than their younger classmates in grades 1 and 2.

These researchers concluded that the extra year before starting

kindergarten does not harm the children who are held out and may

help most of them.

In contrast, the researchers discovered that children who repeated

kindergarten were doing worse than their younger classmates on most

school performance indicators by 1st or 2nd grade. For instance, two-

thirds of the retained students had received some negative feedback

from teachers compared with less than half of the nonretained

students. The retained students were also much more likely to have

problems concentrating, to perform below their capabilities, and to

act up and disrupt the class. Zill, Loomis, and West concluded that

repeating kindergarten had not helped those children and may have

actually made matters worse.

Reasons for the Differences

What explains the difference between the school performance of

delayed-entry children and those who repeat kindergarten? Both

groups of students are older than most of their classmates, so why

don't the beneficial effects of being older apply to both groups?

Some possible answers are that

The underlying developmental problems of the two groups may differ.

The two groups may have different socioeconomic backgrounds.

Parents who choose to delay their children's school entry may have a

higher level of awareness and involvement.

The stigmatizing effect of being required to repeat a grade may harm

children's academic progress.

(read full article)

http://www.ascd.org/publications/ed_lead/200304/holloway.html

(go with your gut ....after you research all the research)

(and print out the above link to bring to the IEP)

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

As you know I agree . One thing far too many parents don't

appreciate until hindsight kicks -is that it's not just being ready

for kindergarten...it's being ready for first grade, second grade,

third, and the rest -it's only easy for the first year.

As I have made very clear -Tanner didn't start kindergarten until 6 -

which was 'normal' for all of the children in the town we moved from

in NJ (which is not far from NYC and a blue ribbon school district)

and he was in OT through out kindergarten working on fine motor

skills which he transitioned out of at the end of kindergarten. He

was top in a mainstream kindergarten class in a public school with

pull out ST and OT -and is now mainstreamed in an accelerated

academics private school in 1st receiving straight A's in

everything. I know he would not have been ready for this earlier.

Some here say they are happy they started their apraxic child at

five -most say it was a mistake if they did -and a few like me who

waited to start their child until 6...all happy about it. Starting

younger than 5...for an apraxic child? Why in the world would

anyone want to do that?

Start your child when you believe they have the best chance for

staying in the mainstream throughout school -and without struggles.

(key words " self esteem " )

Here is a good archive on this here

/message/24826

and

here

is another to/from Tricia -a mom to talk to about this:

From: " kiddietalk " <kiddietalk@...>

Date: Tue Nov 11, 2003 6:08 pm

Subject: Re: Starting Kindergarten vs. Waiting

Tricia when I wrote about the only two families that started their

child at five instead of six in kindergarten in our old NJ town (us

being one of

them because we didn't know) guess what? Dakota and Molly (the

other five year old in Dakota's grade) were two of the three

children that the teacher's suspected ADHD in.

Granted -many others, including MDs, viewed Dakota as having some

type of ADHD until we used the right oil therapy with him, but

maturity surely had something to do with it for Dakota and for Molly

as well. And...in Dakota's case, since his birthday is July 30th -he

was not just the youngest in that he started at five -he is still

the youngest even when with other five year olds.

One of the complaints about Dakota to us? during story time " he will

lay down on the rug instead of sitting up the whole time like the

other children " At five he was over a year younger then the rest!

Dakota did well in school, however I don't like that he had so much

pressure put on him from five years old to behave. He went through

a year of his young life (first grade was the worst)

hearing " Dakota! Sit up! " " Dakota, pay attention! " " Dakota! " etc.

Dakota loved all his friends and did too well academically to keep

him back -but by the skin of his teeth he was not put on medications

for ADHD -and we took him for many opinions. Back then I had many

conversations with the other parents too (was a class mom) -and we

just couldn't keep Dakota back even though maturity wise it would

have been best. He had, again, all his friends that were all one

year older - and was a good student.

(update -key word here is " used to be " for those that are happy they

started an apraxic child at five -hope you are still happy down the

road -I used to be and I'm not now) I used to be happy that I

started Dakota when I did at five and Tanner at six. But as the

years went on, I believe it would have been best for Dakota to have

started at six too. He's still not the most mature in his classes

even today -and still the youngest -and again doing too well to keep

back. He's typically a straight A and B student.

Tanner not only had that extra year developmentally to grow so his

motor planning and speech was much improved -that year did make a

difference, but Tanner is also always the well behaved mature child

in the class. He is friends with everyone -including the teacher.

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

How old is your daughter now? You may have another option you have

not thought of yet -waiting one more year to start and having her

preschool program paid for by your school district for one more

year -it's what we did -and in the long run we are saving them money

because Tanner, in spite of the fact his speech is still not

perfect, is now mainstreamed and doing great. There is much on this

in the archives -as well as your question about learning to read

(Tanner who is apraxic was one of the top students in his

kindergarten class -and loves reading simple books like Dr. Seuss

etc. -and with the Cat In the Hat movie coming out now!!)

In general -I feel strongly about putting your child into the least

restrictive environment -even if a " special " Kindergarten is

available. As I said to Tanner's IEP team -we are talking about

kindergarten here -not a rocket science class -if a child isn't

given a chance to make it in a mainstream Kindergarten -than what

grade do you propose is best to start them in the mainstream?!

Speech ability is no indication of intelligence -schools for the

deaf are aware of this. I so love and miss Kanter who was the

Executive Director of, and the life behind -the Summit Speech

School - who passed away the other day of cancer.

I don't know how I'll ever be able to think of the Summit Speech

School without thinking of , in awe of her -and can not

imagine that school without that amazing lady running it. No wonder

members here are having trouble getting their hearing apraxic

children into that school today - apparently wasn't there to

help bring our children a voice anymore -she was too sick.

Please quote her to whoever tells you that your child isn't able to

attend this school (or one like it) if they are not deaf -her

message should carry on even though she is no longer with us. " Our

hope and our goal is to mainstream these children into their local

kindergartens " Kanter -Executive Director Summit Speech

School. " children with apraxia appear to benefit from the same

therapies as their hearing impaired peers "

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

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

And the archives are funny to read -here is one where I say I didn't

believe Tanner will still be " top in the class " due to the type of

school:

I would strongly advise to do the extra year of preschool and start

your child at 6 in all day mainstream kindergarten unless you are

positive that he is ready now. And when ready I would try to have

him start out right in the mainstream all day. In Dakota's

kindergarten class the children that were integrated in from the

contained class did come in -but it's not the same as just having

them be in the one class all day.

The public school talked about starting Tanner in a self contained

class for kindergarten while his private school therapists and

teachers as well as Glenn and I and his doctors pushed for

mainstream. My point was -if he can't make it in kindergarten " it's

not rocket science class " -what age do you suggest starting them in

the mainstream?

Once they start kindergarten -you will not want to hold them back

either -they make friends. I found the other children to be a great

inspiration and help to both my boys Dakota and Tanner.

I can tell you that in Tanner's case it ends up the old public

school was wrong and his parents, MDs and regular therapists and

teachers knew best. (is that a shock to anyone?) My thought was and

still is give the kid a chance to prove he can do it. Speech

problems do not have to be an indication of academic ability.

Tanner started mainstream kindergarten at 6 -and he was one of the

top in his class -which is the best feeling in the world. Tanner

will this year however be entering first grade in a private

accelerated academics school with children that were fluent readers

and writers since kindergarten -so well advanced of the public

school expectations -so Tanner will no longer be top in the class.

I believe Tanner will push to keep up and succeed -that's the way he

is. I we will help him too. (we have a tutor for him already) Why

the push? The more ignorance I learn about speech and language

disorders the more I believe that the sooner Tanner learns to write

and type his complex thoughts that he can't yet express -the

better. There is still such negative opinion overall of those who

don't speak well -and very little in the way of appropriate IQ

testing for the older school age children.

And may want to quote this:

" Studies of non-poverty children in different types of preschool are

simply not definitive, but suggestive. One study by Hirsh Pasek and

Cone compared the children who had attended an academic preschool

with those who had attended a developmentally appropriate program.

Although there were no academic differences between the groups, the

children attending the academic program were more anxious and had

lower self esteem. These result attentuated after the children began

to attend public school. An older study, was carried out by Carelton

Washburn, the famed ton Illinois educator. He had different

classes of children introduced to reading at different grade levels

from kindergarten to second grade.

The children who were introduced to reading at these three levels

were then retested when they were in junior high school.

They were assessed by raters who did not know at what grade level

reading instruction had commenced. What Washburn found was there was

little difference between the level of reading achievement among the

groups. The children who had been introduced to reading late,

however, were more motivated and spontaneous readers than those who

had begun early. Similar findings were reported in the Plowden

Report in England which compared children from the informal schools

of rural areas with children who attended the more formal schools of

urban centers. "

http://www.educationnext.org/unabridged/20012/elkind.html

Happy Holidays!

=====

[Guest guest]

alyssa is going into special education kindergarden.she has been in spec.ed.

preschool for 2yrs, I believe it will b tough but she really does well in school

an there are only r other students in her class all of which were in her

preschool class. she knows upwards of a 100 signs anilmals,#'s,Abc's and can

spell her name,abby(her sister)mom dad cat n dog.knows her shapes. she also

recently recieved a device so shes able to communicate more. yes she has low

muscle tone and gets tired easy but I think she willl do good an if things seem

like to much then I will connsider another yr of preschool. I can not hold her

back not knowing how she will do. An I am alittle offended

to your statement that I need to be brought up hto speed she should be further

along. I have been doing early inervention since she was 6months and working

hard everyday to get her futher. r developmental ped martha jones says this the

worst apraxia she hyas ever seen. I have done multiple different therapies

always one on one outside of school which we continue. I have seen multiple

specialist we live in virginia beach so we have ChKd. right now i am in

huntersville NC doing hyperbaric oxygen treatments. I do appericate the

advice and would like it but please don't assume I am clueless I try so hard for

my girls.

[Guest guest]

um what about efa and epa an vitamin e? wat is the thought here?and does it work

and how much do u give?how often?

[Guest guest]

I know Prompt isn't for everyone, but usually kids that it isn't for are

those that are resistant to being touched. Before you discount it are you

sure the SLP you saw was truly Prompt trained and certified? A lot of

people attend an info session without actually being trained, claim they are

Prompt trained and use some of the methods, but aren't effective at it. I

know I'm like the list Prompt cheerleader, but I saw absolute miracles come

from Deborah Hayden's hands (she's the founder of Prompt.) My son was

blessed to have been able to work directly with her and then for his SLP to

be directly supervised by her. We have moved away from Santa Fe, but he now

sees a Prompt level 3 certified therapist who is also one of the Prompt

trainers. She actually doesn't do any Prompt with him now unless he gets

stuck on a sound. He's just working on language. It might be worth

checking with Prompt again and seeing if this therapist truly was prompt

trained. Also if there are others near you. Some kids click with one

therapist and not with another. The fact that your child is making some

good clear initial sounds makes her a great candidate for the tactile cuing

on that final sound (esp final consonant) sound )that prompt really helped

my son with. Sometimes it takes a break, a switch in therapist or

environment for a kid to accept and improve with something you tried

before.

As for what she is getting in school, while I strongly believe that indiv

speech is what is needed, a little group doesn't always hurt, especially in

some situations. My son was in a bad group two years ago. That was

worthless, but this past semester he got no indiv in school, but he did get

2 half hour group (just one other child) sessions and they kids he was

paired with were great for him. The girl was patient and helped my son, and

the boy in the other session my son was able to help a lot. There were like

mini cheerleaders for each other!

Hope this helps a little. At 5 and even 6 my son was still severe. He

turns 7 in 10 days and his apraxia is resolved! Vitamin E, Prompt and

patience and lots and lots of hard work paid off!

Miche

On Fri, Aug 22, 2008 at 7:58 PM, michelle_mcnamara <

michelle_mcnamara@...> wrote:

> Hi

> I have a 5yr old daughter Alyssa. She has been dx:Severe verbal

> apraxia,pdd-nos. She has little to no speech she can say mama abby and

> baby clearly,maaa for map,pa for pop and awaw for dada,she babbles as

> though she is talking but it doesnt seem to make anywords . She has

> sensory problems i.e.dislikes certain noises,crowds, she is unfocused

> and has anxiety.She is very friendly and affectionate although at times

> she can have a fit for no reason fitting her self and yelling.She is

> hypotonic waist up and a little hypertonic in the legs but the docs say

> no to CP.

> She has recieved OT PT and speech since 6months and then SE

> preschool and will start SE kindergarden in a couple wks. This summer

> we purchased a spring broad lite augmentive device, she is working on

> but as of now it is all activity driven. I had a nonverbal pictorial IQ

> test down she scored a 79 (which proves to the school she is not MR)

> We also tried Prompt therapy it did nothing.She is no low dose

> risperdol .5mls 2xday for aggression and anxiety.

> We have done genetic testing and had a MRI both neg. for any

> abnormalites.

> Just looking for any advice and info?

> She gets OT 2x in school PT 1x and Speech 3 indiv. and 1 small group

> the school will not give 4 indiv. absolutly refuse..they dont have the

> staff this is because I will not allow in school therapist to service

> her, they have a therapist come in to school for Alyssa.

> OUTside of school she has OT and Speech each once a wk during school

> and in summer each 2x a week.

> Currently I am in NC getting Hyperbaric oxygen teatments for both of my

> children.

>

>

[Guest guest]

almost 2yrs we just stopped in may alyssa did not want the therapist touching

her most days we went 2x week

[ ] Re: Hi new member

Date: Saturday, August 23, 2008, 3:12 PM

it does get overwhelming for all of us. I guess we were

fortionate in that proefa and my son's speech therapist have really

made progress happen for my 3 year old son in just a few months. He

really was silent most of the time before and now I have to watch

what I say because he tries to say what we do. The other day I

thought I heard himm say a curse word (!) He has much more to learn

but most days I know longer feel so helpless. I've learned so much

from the late talker book and from this group. I'm sure you will

learn much here. Welcome!

Kate

>

> Hi

> I have a 5yr old daughter Alyssa. She has been dx:Severe verbal

> apraxia,pdd- nos. She has little to no speech she can say mama abby

and

> baby clearly,maaa for map,pa for pop and awaw for dada,she babbles

as

> though she is talking but it doesnt seem to make anywords . She

has

> sensory problems i.e.dislikes certain noises,crowds, she is

unfocused

> and has anxiety.She is very friendly and affectionate although at

times

> she can have a fit for no reason fitting her self and yelling.She

is

> hypotonic waist up and a little hypertonic in the legs but the docs

say

> no to CP.

> She has recieved OT PT and speech since 6months and then SE

> preschool and will start SE kindergarden in a couple wks. This

summer

> we purchased a spring broad lite augmentive device, she is working

on

> but as of now it is all activity driven. I had a nonverbal

pictorial IQ

> test down she scored a 79 (which proves to the school she is not MR)

> We also tried Prompt therapy it did nothing.She is no low dose

> risperdol .5mls 2xday for aggression and anxiety.

> We have done genetic testing and had a MRI both neg. for any

> abnormalites.

> Just looking for any advice and info?

> She gets OT 2x in school PT 1x and Speech 3 indiv. and 1 small

group

> the school will not give 4 indiv. absolutly refuse..they dont have

the

> staff this is because I will not allow in school therapist to

service

> her, they have a therapist come in to school for Alyssa.

> OUTside of school she has OT and Speech each once a wk during

school

> and in summer each 2x a week.

> Currently I am in NC getting Hyperbaric oxygen teatments for both

of my

> children.

>

> WWW.freewebs. com/abigailmcnam ara

>

[Guest guest]

Maybe I'm the clueless one-- but I never saw anything like this sort of

comment made by .

I believe she was just trying to help you, and being that she does have a

great deal of experience in this, and she has a published book on the topic, I'd

say that she has a pretty decent amount of knowledge to share with others.

I believe that was her only intent-- hence the reason for this list

Becky

In a message dated 8/23/2008 9:06:18 A.M. Eastern Daylight Time,

michelle_mcnamara@... writes:

I do appericate the advice and would like it but please don't assume I am

clueless I try so hard for my girls.

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

I know you're frustrated and you're seeing the lack of verbal skills now--

but take heart, with the hard work and efforts of the RIGHT therapist and the

RIGHT combination of therapy programs, it will start to click.

If you haven't found that yet-- personally, I'd recommend getting another

therapist.

A good SLP who is trained in Apraxia *WILL* see results with the child,

whether it be the sounds or the oral motor improvements-- etc, there will be

improvement . From my experience with my severely Apraxic son, the right thing

for us wasn't any ONE program, but a COMBINATION of things. I found a highly

trained SLP who's been in the business for 30 yrs, and she combined PROMPT with

the Kaufman, and something else.

Last year, my son had *maybe a repertoire of 5 words and half weren't even

intelligible. Today he's putting together 4-6 word sentences. Of course the

longer the sentences get, the less intelligible he becomes, but that's to be

expected. We never thought when we started out last year that we'd have this

much improvement, but due to an amazing therapist working AT HOME with him for a

1 hr session, that right there made a ton of difference. On top of that I

worked with him DAILY and basically infuse his life with words and practice--

making it as fun as I can, but of course that's not always possible. The child

has to work a lot, but he's seeing it pay off and understands that the

harder he works the more we can understand him.

So-- keep plugging away. Find another therapist if you can, and definitely

try to get MORE therapy sessions into the schedule, because it doesn't sound

like there's enough for what is needed at this point in her life

Becky

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Hi again - I have some information below to answer some of

your questions but I'm also next going to send the long " new member

archive " for you which everyone else here is probably sick of seeing!

While I agree with Miche that there are some reasons for small group

therapy for an apraxic child -when they are essentially nonverbal at

5 years old that would be considered beyond severe -a profound

impairment and in that situation in my opinion that child should be

entitled to at least 4 days of 1/1 therapy if not 5.

http://www.cherab.org/information/speechlanguage/therapymatrix.html

There are many reasons for 1/1 therapy here are just a few

http://www.cherab.org/information/speechlanguage/therapyintensity.html

About types of therapy- I agree that Prompt can be awesome but I'm a

much bigger fan of those SLPs that know multiple methods because you

never know what has to be pulled out of the hat to help that child

with that particular sound. Actually many of the apraxia experts

like Kaufman and Sara Rosenthal appreciate the other

methods. Through CHERAB we brought our CHERAB advisors together in

NC for a conference for all to share. That's why I said not all the

experts know all methods because some are very good at what they do

but have little to know knowledge of an effective strategy that they

don't practice and in addition there is quite a few that may still

believe that fish oils mean nothing -ha! Deb Hayden was invited to

the following conference as well but due to previous obligations sent

someone to represent PROMPT

http://www.cherab.org/news/nc2003-conference.html

Since the above conference was in 2003 the following are two archives

from 2003 about types of therapy. Of course this was also the year

The Late Talker book came out and we had interviewed various experts

in speech and language to bring the best information out in one

place. So as I say below- if you don't own a copy -rent one from the

local library (and you'll probably then want to own one because there

really is so much information in it that I wish I had back when!)

Re: Success Stories

> As a new person to your list and new to the world of apraxia, I

would love to

> hear any success stories you have of your kids.

> What therapies helped most?

Speech and occupational therapy done in a fun multisensory way. We

found both traditional therapies typically beneficial for apraxia

such as Easy Does it for Apraxia, Kaufman techniques (and kits),

touch cue including but not limited to PROMPT, and oral motor as

well as unconventional therapies such as cranial sacral therapy, and

the right formula of EFAs. (can't stress the EFAs enough!)

Also normal kid activities that I encourage you to explore are

swimming, karate, dance, Gymboree or gymnastics, even team sports

etc. Motion seems to help stimulate speech. You may also want to

find activities your child can excel in that don't require extensive

verbal output such as painting or some other type of arts and crafts

class, musical instruments (even some you can make

http://www.preschooleducation.com/art31.shtml )computers, and for

almost all -game boy -Nintendo, game cube or some other playstation

type game station. Not only will help with hand eye coordination -

but will provide your child with a nonverbal way to " play " with

others. These games appear to be easier to learn how to play when

younger. As an adult you can learn -but the children just pick them

up so quickly.

> How much success have your kids had?

My son Tanner who has been diagnosed with verbal/oral

apraxia/sensory integration dysfunction and mild hypotonia knows

what he needs to do and has always worked hard at achieving goals.

He puts lots of pressure on himself - on the other hand isn't

discouraged when he fails -he'll just try again. For this reason -

his success rate is as high if not higher than even children who

don't have apraxia in some nonverbal ways.

> Has apraxia stopped your kids from being in regular preschool/

schools?

With Tanner I always followed my gut. When preschool age and

essentially nonverbal I found Tanner shied away from other children -

would regress and go into a corner or off by himself when at

children's parties or at friends or neighbor's houses when many

other children were around. I sheltered Tanner at this age -and

always assured him that " everybody learns to talk " He did really

well with one on one play dates -and he thrived in an oral based

preschool for the hearing impaired (Summit Speech School in New

Providence, NJ) which was covered by our town's school system and

written into his IEP as " out of district placement "

Tanner did so well in this placement that he was able to be fully

mainstreamed in Kindergarten (with much advocating) with pull out

speech and occupational therapy. He was one of the top children in

his class according to his teacher. This year for first grade

Tanner has tested and been accepted in an accelerated

academics " college prep " school where he is right up to speed with

the children who were fluent readers and writers in kindergarten.

Tanner has now met all his OT goals -but he still is in pull out ST.

> Has apraxia stopped your kids from becoming involved in other age

appropriate

> activities and with making friends?

Tanner plays soccer -and also can do trapeze and circus,

skateboarding, roller blading, tubing off the boat, swimming etc.

He's not very sturdy and graceful with all his movements -like bike

riding, it's harder for him. But he does it. Tanner only had one

problem in teasing which lasted only for about a week until I went

in and did a circle of friends (and used Scooby Doo as a model of

a " cool dog everyone wants to hang with that doesn't talk " right "

all the time) Other than that one time however -even though

Tanner's speech is still not perfect, untypical for children with

speech impairments of his age -he has no problem making friends -and

we can't keep up with all his playdates that he's invited to.

Tanner was very severe at three -so there is hope for all children.

You can read Tanner's story in The LCP Solution book

http://www.drstordy.com/stories.html (under the " lellow

breakthrough " ) as well as on this page of the CHERAB website

http://www.cherab.org/information/familiesrelate/letter.html you can

hear him throughout the past few years at The Talking Page

http://www.debtsmart.com/talk/tanner.html (the first time he was

taped was after nine (!!) months of Efalex -and this was excellent

progress for him recorded by his therapists/doctors. He now is on

ProEFA/ProEPA)

Also if you are looking for stories -have you read The Late Talker?

We interviewed hundreds of families/professionals for this book which

is for any child that has a delay in speech whether it's apraxia or

just a simple delay.

http://www.speech-express.com/late.talker.html

Hope that helps!

Re: SPECIFIC SPEECH AND OT THERAPY

Hi Karyn,

It's a great question -however there really is so much diversity

depending upon the child -that's it's hard to sum up all the

approaches in a multisensory approach without leaving out aspects in

a post here. One here suggested PROMPT -but say you don't have a

PROMPT therapist near you - and your child's therapist has an

amazing touch cue technique -is one approach just a variation of the

other? Would you know? And would this one approach alone be " it " ?

In my opinion -there is no such thing as one therapy or even

therapist alone that is " best " for all children with communication

impairments -it always depends. Some children only have a simple

delay -some have only one aspect to the delay and some have

multifaceted aspects to their disorder of speech and language.

It is obvious to us -the parents -that for whatever reason -our

children with simple delays in speech do " pick up " language from

other children while our children with severe disorders of speech do

not just " pick up " language from other children -or adults - and

these are the children that require appropriate and intensive

therapies in order to succeed -communicate. Personally -I like

the 'buffet style' therapist best for my son Tanner who incorporates

a different technique depending upon what we are working on -and

depending upon Tanner that day.

I do want to encourage everyone to keep sharing -it's great to hear

from everyone here and at other grouplists -also Karyn -check the

archives here and at other groups too if you want for suggestions.

To hear all specific speech and OT therapies however -will take

awhile. As you read more and more however you will discover that a

multisensory approach is best for it appears all with a learning

disability (speech is the number one learning disability)

Here is a link about multisensory for learning disabilities -

http://www.ldonline.org/ld_indepth/reading/mssl_methods.html this

same basic principal works for any child with a learning disability

even though the names of the " therapies " may vary. Here is a link

about the Association Method School which is one of if not the best

school for a communication impaired child, and is a multisensory

approach school http://www.dubard.usm.edu/associat.htm

" Multisensory teaching ..includes the use of auditory, visual,

tactile, and motor-kinesthetic cues for learning "

If you learn the basics of what a multisensory approach is, and know

your child and what learning style works best for him or her - you

can become creative from there. Some of the more creative things we

find to work like the " ride therapy " I brought up - which appears to

enhance traditional therapies, are mainly still based off the

traditional therapy ideas of a multisensory approach.

The ride therapy for example is based off the occupational therapist

theory that motion can help to stimulate speech, and is one of the

basis for speech development. We can take these principals -then

adapt these principal to our own unique child. So in the case of

the rides -if I heard that rides may help stimulate speech and if my

child didn't like scary fast rides like some posted (which Tanner

also didn't believe he liked before he tried them) we let him go on

the ones he wanted - the small slower kiddie rides: his favorite was

the 25 cent yellow pony outside of ShopRite or the space ship outside

of Pathmark (supermarkets) that swayed softly around forever (it

seemed to me)...but then Tanner tried the water flume -and no looking

back now....

A much easier and much faster way to learn the basics of " what

works " would be to read The Late Talker book that was co authored by

Marilyn Agin MD, Malcolm Nicholl, and myself. There were a huge

amount of parents and professionals interviewed for this book

including those recommended here -Dr. a Tallal (Fast For Word),

Sara Rosenfeld- MS CCC/SLP (oral motor therapy),

Kaufman CCC SLP (Kaufman technique) Dr. Andy Bondy (PECS) Deb Hayden

(PROMPT) etc. and the editors narrowed The Late Talker down to a

step by step easy to understand and read book which among other

aspects covers your question of what therapy works best.

Here are some of the basic aspects covered in this book:

• An explanation of the various speech and language disorders, and

recommendations on when and how to seek the right kind of

professional evaluation.

• An exploration of the appropriate therapies a child should

receive from speech-language pathologists (SLPs), and how to support

their efforts.

• Exercises to do at home with a child.

• Tips for easing the inevitable frustration a late talking child

experiences—as well as advice to parents on coping with their own

frustrations.

• A detailed review of an intriguing nutritional supplement that

has achieved promising results in helping late talking children.

• An explanation of parents' rights and how to navigate the school

system and insurance maze on the child's behalf.

• Stories of other parents who have struggled with a child's speech

development problems.

http://www.speech-express.com/latetalkerrelease.html

Of course -as a co author I may be biased -however as a parent -I

wish I had The Late Talker book when Tanner was two and didn't have

to learn everything bit by bit, trial and error, the hard way.

~~~~~~~end of archives

=====

[Guest guest]

See-- now that just doesn't sound right. I don't think that even the WORST

case of Apraxia would see no results in 2 yrs. My first instinct is that the

SLP wasn't a good match for her--because I think you'd see SOME sort of

improvement

bek

In a message dated 8/23/2008 6:05:47 P.M. Eastern Daylight Time,

michelle_mcnamara@... writes:

almost 2yrs we just stopped in may alyssa did not want the therapist

touching her most days we went 2x week

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

it does get overwhelming for all of us. I guess we were

fortionate in that proefa and my son's speech therapist have really

made progress happen for my 3 year old son in just a few months. He

really was silent most of the time before and now I have to watch

what I say because he tries to say what we do. The other day I

thought I heard himm say a curse word (!) He has much more to learn

but most days I know longer feel so helpless. I've learned so much

from the late talker book and from this group. I'm sure you will

learn much here. Welcome!

Kate

>

> Hi

> I have a 5yr old daughter Alyssa. She has been dx:Severe verbal

> apraxia,pdd-nos. She has little to no speech she can say mama abby

and

> baby clearly,maaa for map,pa for pop and awaw for dada,she babbles

as

> though she is talking but it doesnt seem to make anywords . She

has

> sensory problems i.e.dislikes certain noises,crowds, she is

unfocused

> and has anxiety.She is very friendly and affectionate although at

times

> she can have a fit for no reason fitting her self and yelling.She

is

> hypotonic waist up and a little hypertonic in the legs but the docs

say

> no to CP.

> She has recieved OT PT and speech since 6months and then SE

> preschool and will start SE kindergarden in a couple wks. This

summer

> we purchased a spring broad lite augmentive device, she is working

on

> but as of now it is all activity driven. I had a nonverbal

pictorial IQ

> test down she scored a 79 (which proves to the school she is not MR)

> We also tried Prompt therapy it did nothing.She is no low dose

> risperdol .5mls 2xday for aggression and anxiety.

> We have done genetic testing and had a MRI both neg. for any

> abnormalites.

> Just looking for any advice and info?

> She gets OT 2x in school PT 1x and Speech 3 indiv. and 1 small

group

> the school will not give 4 indiv. absolutly refuse..they dont have

the

> staff this is because I will not allow in school therapist to

service

> her, they have a therapist come in to school for Alyssa.

> OUTside of school she has OT and Speech each once a wk during

school

> and in summer each 2x a week.

> Currently I am in NC getting Hyperbaric oxygen teatments for both

of my

> children.

>

> WWW.freewebs.com/abigailmcnamara

>