what to do

[Guest guest]

I'm not sure who she'll be seeing exactly. Her pediatrician's office called

and got the appointments for me. I know we wont have to go the whole way

into Oakland though. She'll be seen at a satellite office in Monroeville.

That in itself is a blessing for me. I can get around Pittsburgh pretty

well since I used to work in the North Hills, but with all the construction

going on half the time I can't rememeber which streets I have to find a

detour for!

It was worse. My first time going to the neurologist's office by myself I

took a wrong turn. I knew I was close to the stadium so I figured I'd just

loop around by the stadium and jump up onto the bridge to catch the

Moneroeville exit. WRONG!! That street that used to connect from by the

stadium to the Ft. Pitt bridge now runs into the Right Field wall at PNC

park. lol

I'm actually out in Latrobe. But Pittsburgh is close enough to get to all

the specailists so we're down there a lot. :-)

I did find a webpage with a list of all thier audiologists and SLP's on it.

http://www.chp.edu/clinical/03a_audio.php

Toni

Re: [ ] What to do

Hi Toni...

I was just curious on " who " you were seeing at the Children's Hospital in

Pittsburgh. You are in Pittsburgh...right?? We took our son to the

Children's

Hospital of Pittsburgh North to see a SLP who's name is Hammer.

Please let

me know if you are seeing someone different...I'm very interested in any

professional around here who knows about Apraxia.

Thanks...

Mandy..mom to 3.7yrs./apraxic

[Guest guest]

HI

My heart goes out to you - my girl started her Reception Year last year

being pretty incomprehensible. She too would get frustrated with me & I

would ask her to draw the thing etc she was talking about. Only 70%

effective but it served purpose as it kept a dialogue going & even if I

couldn't identify her scribbles - the continuing 'talk' gave me a better

chance to guess what she was on about. ( This was a tough call too as she

has some fine motor issues - felt tips help with a child's lighter hand

pressure).

I have to say that by the Christmas break she became clearer in her speech &

I personally think that being with 'standard' children - with no allowances

from them re: speech - she basically had to sink or swim. Each and every

day must have been bloody hard.

By then (last Christmas) she had befriended a Russian girl who had pigeon

English, & who I found very hard to understand myself, & she also befriended

a little boy who word gropes & has the slightest speech issues with 'f' &

's'.

Your little girl maybe unlucky that she doesn't feel there's anyone else

like her in her class - she's having the most challenging transition of her

life at the moment - I know you're there for her giving all the emotional

support you can possibly give, as I did & do for mine. But it never feels

enough does it?

's suggestion about how her brain is working on other levels is a good

one - for a 5 yr old to grasp it though is gonna take some imagination on

your part to simplify. loved her piano keyboard & I used to say stuff

like comparing her voice & all it's sounds like all the different keys yet

some keys were 'off' or not working at all - that's why we went to ST to

practice , practice, practice...so eventually they'll come good in the end -

eventually - after tons of hard work.

I 'm sorry this post doesn't offer much constructively for you - but I truly

believe there is a light & it is at the end of the tunnel.

Love to all

Gin & 5.8 (verb & oral Dysprax + motor + residual dsi)

Barnet, UK

[ ] What to do

> My 5 year daughter has recently been asking when she is going to

> talk right and what's wrong with her because no one understands what

> she says. She was diagnosed with apraxia last year where she

> received 2 individual speech therapy sessions a week, one group

> session and was in a class for the developementally delayed. This

> year she is attending regular kindergarten (per the recommendation

> of a 5 panel child study team) where she receives 2 individual

> speech therapy sessions per week and there is a special ed teacher

> in the class part of the day. The teacher is there primarily for my

> dauther but the teacher helps the entire class as not to single out

> my daughter.

>

> I am having a hard time dealing with her awareness of her problem. I

> tell her that she has is getting help with her speech and that as

> long as we continue to practice things will get better.

>

> I, too, am having problems. Last year there were still quite a few

> children who were hard to understand but this year all her

> classmates sound so grown up that it makes me so sad and frustrated.

> My daughter is also lashing out physically at me when I don't

> understand what she says. I truly understand how frustrating it must

> be to have all these words and thoughts in one's head but they can't

> get out. I can see her struggle to find a word that she can

> pronounce. Even then, I sometimes get it wrong and she flips. How

> horrible it must be for her when her own mommy doesn't understand.

> Sometimes I just sit and cry at night.

>

> Thanks for listening,

>

[Guest guest]

When my daughter was 3 1/2, she only said a few words. She was a

little terror, and would have horrible meltdowns when she was

frustrated and tired.

She's 7 now, and she still has some meltdowns in the evenings.

However, her she calms down quicker from her meltdowns.

The other thing is that she really behaves beautifully 90% of the

time. I was helping in school last week for the first time this

year. I couldn't believe how well-behaved both of my girls (twins)

are. They were 2 of the best behaved kids in the class. They

listened to the teacher, and they did their work. They weren't

wiggly like lots of the kids. They are quiet (but I wouldn't mind

them getting in trouble for talking too much).

Anyway, when was 3 and 4, I would have never have thought that

she would be one of the best behaved kids in her class.

She's definitely talking now, and she can get her point across most

of the time. She's gotten use to other people not understanding

her, and she doesn't get too frustrated with other people. She does

still get frustrated with me. I'm supposed to read her mind. I

really love it when she'll answer a question like " What do you want

to eat? " and she'll tell me " You know. "

Anyway, keep plugging along and hopefully things will get easier.

> I wish I knew what to tell you. I have a similar problem with my

3 1/2 year

> old. She throws things, hits, and pulls other people's hair when

she can't

> get her point across. There is so little she says that other

people

> understand that she gets so thrilled when someone gets it right.

Right now

> she's getting 1 individual speech session a week and 6 hours of

class time

> that is developmental therapy/group speech therapy. At the moment

I'm

> working on getting her individual therapy increased from 1 hour a

week.

> Unfortunatly I'm getting told that they're working on getting it

increased

> but they have limited staff and a lot of kids to see. When I

called the

> director asked if she had an official diagnosis and I was floored.

Didnt

> they read her file and pull it when they knew who we were talking

about?

> Obviously not. At the moment I'm kind of stuck since the local

SLP couldnt

> get the testing done on her and the first available appointment at

> Children's Hospital for their developmental clinic is December 9,

and we

> need that testing done to back up the neurologist's diagnosis

before our

> insurance will cover private therapy. If I fight the school to

get he more

> therapy, by the time I get any results she'll have her appointment.

>

> The only hope of getting things done sooner is when we go down at

the end of

> this month for her hearing screening, which is also for the

insurance

> comany's benefit, I can tell them I'm a stay home mom so as long

as I have

> 90 minutes notice I can make any appointment if they have a

cancellation. I

> can actually make the trip in under an hour, but 90 minutes gives

me time to

> get the girls gathered. So if Hope happens to be in school that

day I can

> call her teacher and go pull her early to get there if I have to.

Her

> classroom has a direct line so I dont have to worry about someone

in the

> office not getting them a message.

>

> Toni

>

>

>

[Guest guest]

Hi Gin and all!

I explained it to Tanner at five -but I would use words like " boo

boo " and when I said brain I patted his head. And Suzi unless you

meant another -I did tell Tanner about his weakness, and why we

have to work on that with exercise and therapy.

I don't underestimate what a five year old understands because like

I have amazing recall to my own childhood. I even remember my

mom explaining to me at one year old that we were moving from Newark

NJ -and explained to my mom when I was old enough to talk what the

house looked like -what my baby sitter looked like -what our yard

looked like (which needless to say freaked everyone out since I was

right). Even farther back -I remember being in a stroller falling

asleep to the street sounds of Newark NJ -(this one is really gross

now that I'm old enough to know what I was doing!!) remember

crawling all over the ground in Newark NJ when I could get away from

my mom to do this to find little white things to put in my mouth

because one white thing I found on the ground one day tasted really,

really good. (all the white things I found on the ground after that

tasted bad -but I didn't give up easily ever I guess)

At five years old my goldfish Princess that I bought at my school

fair died and I was just devastated. I was crying and crying. I'm

(just) a bit older now but to this day cherish what my Daddy told me

about death which calmed me at that time for some reason -beyond all

the " Princess is in heaven now " words used to calm me down by

others. My Dad took me to the front window of our house and

said " , you see the lawn out there? " I nodded yes -sniffing. " Each Fall

the lawn turns brown and dies and each Spring new grass comes up to

replace it, but it's always the same lawn. That's the circle of

life " It calmed me, but you know what -to this day I don't understand what he

was trying to tell me for sure! And because my Dad died of a heart

attack suddenly when I was only 23 years old, I'll never know for

sure. I do know that his words came back to me in memory after he

died -words he told me when I was only five. And his words about death

comforted me

nearly twenty years later.

Again -I'm not like most people. Most people don't have 159 IQ and

most people don't remember being a baby -but I do know that children

understand far more than most give them credit for understanding. I

also know that a child who has a speech and language problem has

much more in their head than we'll ever know. When they are at the

age where they are questing " What's wrong with me? " they are at the

age they will understand what you tell them. Each of you follow

your heart -and you will know how to tell your child. I can tell

you that -mom to Khalid who is now 16 years old told his mom

and dad that what upset him most is that they kept his diagnosis

from him while he struggled with speech/teasing -wondering " what's

wrong with me?! " It wasn't until his school SLP named told

Khalid at 8 years old that he finally knew what was going on.

I'm sure can fill in the details (if her company is gone.

?)

And for anyone who missed this -here is what I told Tanner at five

/message/23860

May not work for all kids, and Tanner may not have understood it

100% either -but the point was that I explained it not as a problem -

but as a reason why he is as brilliant as he is! Seems to have comforted him.

=====

[Guest guest]

lISA,

Thanks for sharing your story. I too have often found myself

remembering things that stun people. And while I know I don't have

an exceptionally high IQ (As a psychologist who has administered IQ

tests I have a good idea where I fall) I know that i remember a lot

of what was said to me when very young. I am constantly

telling/reminding people that can hear and understand them.

Thanks again. I thinkI will begin to talk more to him myself about

his feelings and possible frustrations.

Kate, Mom to (35 months with Apraxia) and to (7 months,

who adores her big brother)

[Guest guest]

makes a very important point about not underestimating a childs

perception of his/her difficulties.....it's a very sensitive issue that HAS

to be tackled as a child will 'perceive' all on his/her own at some point

anyway.

Handled well, such as describes, can only be a good thing. I wish some

of the mums that I come across at school or ST would take a leaf out of your

book (literally). I have to report to have been truly horrified by the

anxiety some kids have exhibited because they equate visiting the SLT to

being ill ! This appals me & I feel I should launch at the parent to tell

them to sort out their attitude towards speech issues ( as these young kids

have clearly got this message from them). I don't though ..... & come away

ashamed with myself because I should have spoken up. I should have risked

being told to butt out ..or worse!

I was shown another example of this 'ill' attitude recently when 2 friends

of mine who I've each encouraged to start using EFAs for their kids (one

dyslexic - the other speech) now refer to how well their respective children

take their medicine now. Medicine ? Another illness reference? Well, I

think so ......and I think a young child equates medicine - illness -

sickness - all on their own; they ARE able to perceive - this in itself is

a problem. I know tons of parents on this list use the term meds or

medicine for the supplements that we give our kids so I have no doubt

annoyed a great many people.

I'm going to get truly slated . Sorry, but there you go - it's always

really bugged me.

I make the keyboard analogy because this is all going to come down to how

hard we work to get round my daughter's speech issues. She has to know that

no pill's going to do it (not completely!) - no magic wand - just work,

work, work, practice, practice, practice...every day for however long -

this is what we have to do.

Our kids really are brave troopers and a good many are worriers to boot.

Discussing their issues with them before they make their own assumptions is

vital. Anybody else out there who's had to tackle this one - please ...lurk

no more & post.

Don't want to put any pressure on but if you get the time could you

spare us a few lines on what words from an adult might have helped you as a

child about your disorder?

Love to all

Gin & 5.8 who takes her 'vitamins' & does her speech

exercises/practices daily (verb & oral Dysprax + motor + residual dsi)

Barnet, UK

[Guest guest]

Why are ESY services being discussed now, in September? Maybe try saying that

you don't agree with the SLP's " suggestion " that ESY is not necessary and insist

on revisiting the issue next April. In that time, you can get another opinion?

A written opinion by someone else outside the district carries some weight in

the ESY decisions. Just a suggestion...

Sherry

Angie <blanton@...> wrote:

What do you do when your childs IFSP SLP is your IEP SLP & says she

wont recommend ESY because your child is not severe enough. But I know

& she knows Zach will regress in speech over the summer. Zach is 28

months & is starting 2 word sentences. He can only say simple words

(wawa means water, dip is chip, bob bob is sponge bob etc.) He is also

very unintellegable to others & sometime the SLP herself. I would say

others would not even understand 25% of what he says maybe 20%. He is

at about 90 words if that. He only uses a few of those words at home &

the others in speech. He only uses his most common words. I dont

understand how this is not severe enough. It is still rare for him to

say 2 word sentences & even more rare 3. He will say 3 words sentences

if you coax him to do it. You have to say the words first. He will

only do it about once a month if that. I am so lost at what to do. We

start transition in Nov. & have the IEP meeting in Feb. I am so mad

about this. How can you fight a losing battle. If Zach regresses in

speech he has to have surgery & no one wants to put his best intrests

first but me. Stressed. Angie

[Guest guest]

At 07:46 AM 9/19/2005, you wrote:

>Why are ESY services being discussed now, in September? Maybe try saying

>that you don't agree with the SLP's " suggestion " that ESY is not necessary

>and insist on revisiting the issue next April. In that time, you can get

>another opinion? A written opinion by someone else outside the district

>carries some weight in the ESY decisions. Just a suggestion...

>

>Sherry

Here ESY considerations are made at the IEP in May. If you wait until the

next April or May they don't get things together to get services on

time. Of course they still don't get services on time to most children

including my son who is still waiting (school started 8/17.)

Miche

[Guest guest]

Holy moly! Did I understand you to say that he's not getting services for this

school year and we're a month into school? And, it seems kind of odd to plan

for ESY a whole year in advance - I just don't understand the logic in that

considering all the things that can happen in a year. You do have the power to

ask for a new staffing during the year to review things, correct? That is

within your rights under federal law.. What state are you in?

Sherry

Grassia <miche@...> wrote:

At 07:46 AM 9/19/2005, you wrote:

>Why are ESY services being discussed now, in September? Maybe try saying

>that you don't agree with the SLP's " suggestion " that ESY is not necessary

>and insist on revisiting the issue next April. In that time, you can get

>another opinion? A written opinion by someone else outside the district

>carries some weight in the ESY decisions. Just a suggestion...

>

>Sherry

Here ESY considerations are made at the IEP in May. If you wait until the

next April or May they don't get things together to get services on

time. Of course they still don't get services on time to most children

including my son who is still waiting (school started 8/17.)

Miche

[Guest guest]

Yep, school started on August 17 here in NM. He's not getting services

because the director of special ed is dragging her feet. It seems like she

thinks she can overrule his IEP. She is now requesting another IEP which

legally she can do, but the intent of being able to call an IEP at any time

is to do so in the best interests of the child - not the school! How can

it be in his best interest to call another IEP when his last one wasn't

even initiated? She doesn't like that the team decided his best placement

was not at the public pre-K and they also gave him two hours of

" one-to-one " speech which is unheard of here. The IEP team determined his

plan based on his needs. The director of special ed wants to offer him

services based on what is easy for them to provide, ie. one hour of group

therapy per week in the public pre-K program with has 10-25% typical

children and the rest much more delayed than my son. Between the apraxia

and autism diagnoses it is clear he needs typical peer models for verbal

social communication! We just had an amendment on 9/2 of the IEP done last

May which clarified the services the team felt necessary. But nothing has

been put in place. We're paying for one speech session per week at PROMPT

at this point.

I just retained an attorney late last week. I sent a letter out Friday

certified mail indicating I could not make the IEP they scheduled for

tomorrow on such short notice (it's my day to work at my son's coop, and

before they scheduled it I had said the IEP had to be in the afternoons so

his regular ed school teacher could be there.) I also put in that it was a

formal request that they initiate services now. Hopefully I'll get a

response, if not the attorney will step in. I really want to avoid due

process.

Miche

At 11:11 AM 9/19/2005, you wrote:

>Holy moly! Did I understand you to say that he's not getting services for

>this school year and we're a month into school? And, it seems kind of odd

>to plan for ESY a whole year in advance - I just don't understand the

>logic in that considering all the things that can happen in a year. You

>do have the power to ask for a new staffing during the year to review

>things, correct? That is within your rights under federal law.. What

>state are you in?

>

>Sherry

[Guest guest]

Good that you have a lawyer watching your back. Are there provisions seeking or

requiring mediation prior to due process (in the event things can't be worked

out to your satisfaction and your child's best interests!)? Not that mediation

is binding in court but, who knows, I achieved some success through mediation

with former clients that I might not have gotten in due process (go figure!).

Good luck to you - sounds like its going to be a tough road for awhile. Hang in

there!

Sherry

[Guest guest]

Thanks Sherry.

Our lawyer has a special needs child herself. She did not initially

practice in special ed, but when she started struggling for the schools (a

different city than where we live) to meet her daughter's needs she

realized the need for special ed attorneys and she expanded her

practice. She, like me, would rather negotiate than jump to litigation. I

am going to have many years dealing with the public schools so I don't want

to jump right in to litigation, but I fear it may be an ultimate

necessity. There are mediation processes and IDEA 2004, from my

understanding, has added more hoops to go through before a due process

hearing is granted. While we're definitely trying to negotiate first there

are two pros to due process. First it would put a stop hold on his IEP as

amended and they would have to implement it (the question is will

they? They HAVE to implement it now and still haven't!) Second if we win

then the attorney fees are paid. If we just mediate we have the full

bill. To put it bluntly we're flat broke and have no idea how we're

going to pay the attorney fees at this point even with the amazing discount

this attorney gave us, but we'll have to figure something out because we

can't give up. Our son needs help!

But yeah, it does seem like a really long road ahead.

Miche

[Guest guest]

That is a very cute idea

In a message dated 4/1/2006 4:55:34 P.M. Eastern Standard Time, emilybeth27@... writes:

Maybe, since he'll be wearing it during the spring/summer, you coulddo a "Surfs up" thing with beach stuff or Hawaiian/Tiki stuff...just athought!Bye,

O~~OEgg'stra Special/|\(_|"|_)dwh(_Y_)dwh/|\(DC)/|\(_|"|_)(_|"|_)(_Y_)..(_Y_)/(__DC__)\'\/\/\/\/\/'|§~§~§~~§~§~|`.________.'~andra~~My plagio babyHanger Band 2/10/06Tort resolved www.myspace.com/purexc00

[Guest guest]

That is a very cute idea

In a message dated 4/1/2006 4:55:34 P.M. Eastern Standard Time, emilybeth27@... writes:

Maybe, since he'll be wearing it during the spring/summer, you coulddo a "Surfs up" thing with beach stuff or Hawaiian/Tiki stuff...just athought!Bye,

O~~OEgg'stra Special/|\(_|"|_)dwh(_Y_)dwh/|\(DC)/|\(_|"|_)(_|"|_)(_Y_)..(_Y_)/(__DC__)\'\/\/\/\/\/'|§~§~§~~§~§~|`.________.'~andra~~My plagio babyHanger Band 2/10/06Tort resolved www.myspace.com/purexc00

[Guest guest]

Check in the files section under deocrating - tons of theme ideas

na, DOC Grad X2

Kiersten, DOC Band 1/10/06, Tort

www.thefilyaws.com/plagio/plagio.html

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

Check in the files section under deocrating - tons of theme ideas

na, DOC Grad X2

Kiersten, DOC Band 1/10/06, Tort

www.thefilyaws.com/plagio/plagio.html

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

Maybe, since he'll be wearing it during the spring/summer, you could

do a " Surfs up " thing with beach stuff or Hawaiian/Tiki stuff...just a

thought!

Bye, (Max DOCbanded 2/7)

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

Maybe, since he'll be wearing it during the spring/summer, you could

do a " Surfs up " thing with beach stuff or Hawaiian/Tiki stuff...just a

thought!

Bye, (Max DOCbanded 2/7)

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

Hello ! That's my name too. ) We've had Jungle Animals,

Nemo, Forest animals (bear,moose,raccoon) & Dinosaurs. The Jungle

Animals were my favorite. It had a couple monkeys, alligator, giraffe,

elephant. We are going to be changing the stickers again here soon to

Pooh. I found some really cute Baby Pooh stickers. Anyhoo, those are

somethings we've used. (my son is 10 months) I hope you get some

ideas!

)

Mayson's Mamma

Olympia, WA

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

Hello ! That's my name too. ) We've had Jungle Animals,

Nemo, Forest animals (bear,moose,raccoon) & Dinosaurs. The Jungle

Animals were my favorite. It had a couple monkeys, alligator, giraffe,

elephant. We are going to be changing the stickers again here soon to

Pooh. I found some really cute Baby Pooh stickers. Anyhoo, those are

somethings we've used. (my son is 10 months) I hope you get some

ideas!

)

Mayson's Mamma

Olympia, WA

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

-I went up and down the scrapbooking aisle at michaels or rag shop or

any local craft store you may have and I chose stickers that hit me. I

did an aminal farm on his helmet and covered it with modge podge. hope

this helps mimi

-- In Plagiocephaly , " " <missat101@...> wrote:

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

-I went up and down the scrapbooking aisle at michaels or rag shop or

any local craft store you may have and I chose stickers that hit me. I

did an aminal farm on his helmet and covered it with modge podge. hope

this helps mimi

-- In Plagiocephaly , " " <missat101@...> wrote:

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

[Guest guest]

Hi there

I did the same thing. I went and got stickers, and put themes on my

daughter's band, then covered it by mod podge. Actually I put a

thin layer on the band then the stickers and then covered it again.

That way when I went to change the theme it all came off really easy.

Sandy Willow's mom

torticollis resolved

Cranio Grad (germany)

> >

> > Vince gets his doc band on thursday and i have no idea what to

paint

> > on it...he is 7 months anyone got any ideas?

> >

>

[Guest guest]

Hi there

I did the same thing. I went and got stickers, and put themes on my

daughter's band, then covered it by mod podge. Actually I put a

thin layer on the band then the stickers and then covered it again.

That way when I went to change the theme it all came off really easy.

Sandy Willow's mom

torticollis resolved

Cranio Grad (germany)

> >

> > Vince gets his doc band on thursday and i have no idea what to

paint

> > on it...he is 7 months anyone got any ideas?

> >

>

[Guest guest]

>

> Vince gets his doc band on thursday and i have no idea what to paint

> on it...he is 7 months anyone got any ideas?

>

thanks everyone i will let you know what i do