Re: AFTER THE DEV. PED. VISIT

[Guest guest]

Thank you for taking the time to write this. It is so true that seeing the

" right " doctor, who truly gets that motor coordination is not equal to

intelligence, can make such a life altering difference in what happens to a

specific

child. It is easy just to slam a door shut and write things off as

" cognitively " based. It is much harder to write 10 page reports that take into

account a child's history and a child's performance in all areas. This is why

finding doctors like Dr. Agin becomes so critical. I wish there were more of

them.

Hang in there, Tina and .

In a message dated 1/28/2006 6:14:20 AM Pacific Standard Time,

kiddietalk@... writes:

Tina and -I am so sorry!!! I guess I didn't post enough the

importance of seeing not just any neuroMD -but one who has a clue.

Your examples are what happens when you see one that doesn't.

Dr. Myers says " a child who mastered a skill should be able to

transfer teh skill to any setting. " Well the word " mastered " could

mean they overcame conditions such as apraxia or selective mutism

etc. which have separate and very real reasons why a child may not

always perform on command in " every setting " But does he know about

either of them for just two examples why a child may not transfer

skills to every setting? What if a smart child just didn't like him?

And diagnosing MR at 18 months...

or 2 years old, especially in a child with signs of a motor planning

disorder? And saying a child is not MR because she's " too social " ?

As much as I'd like to agree that some of the nasty people out there

who judge a babies cognitive ability on how much they smile are in

some way MR -don't think that's how IQ works.

But at least even if Dr. Myers doesn't give advice you can take to

the bank -he gives you hope right? Oh wait not right...

You say " AT her latest appointment when she was 4, he told me that

if he had

to classify her now, based on her current abilities he would give her

an MR diagnosis. He told me that as she ages it is less likely that

she would outgrow her cognitive deficit. "

Did he know she has " severe motor planning issues " and that motor

planning has nothing to do with IQ? And do you know that if your

child is diagnosed as MR the " many services " may be there now at 4 -

but don't expect them down the road because after all (example) Mrs

, " your child is mentally retarded and no matter how much

speech therapy we give her she'll never talk " Check the archives

that is why they are there. Get rid of that MR label yesterday -or

at the latest ASAP NOW! Boy do you need another exam with a doctor

who has a clue! Let me put if this way...you say both of them

specialize in autism and ADHD -if I had a child with autism (and I

do have a child with ADHD) you wouldn't catch me taking my child to

either of them if they were the last doctors on the planet based on

what either of you wrote here. And if you are from PA -you are so

close to a slew of MDs who are very knowledgeable about apraxia,

autism, ADHD...children.

And the increased babbling is awesome!! Don't let this

unknowledgeable doctor poorly judge your child. Second opinions for

both of your babies is my recommendation. You know not that long

ago we had a heated conversation about Dr. Agin and her fees. The

two of these doctors slams home the reason of why it's so important

to take your child to MDs who are knowledgeable. Because it's

priceless. My apologies to both of you for what you went through.

Please don't let them give up hope on your babies. I bet if either

of these MDs saw Tanner when he was a baby they would have found him

to be cognitively delayed as well since in addition to severe oral

and verbal apraxia he also had hypotonia and sensory integration

dysfunction and with his oral apraxia appeared to have no expression

most of the time (so didn't look very social) It makes me so

angry. Oh -and Tanner's in mainstream 3rd grade today and just

tested 5th grade level for math and creative writing and something

else I can't remember -visual memory recall? -and on 4th grade level

for everything else.

Don't make assumptions about a child's learning difficulty. Here's

a recent article even saying that about a 5 year old! Wonder what

this doctor would say about what these doctors are saying about 18

month olds with suspected apraxia! Fax this to both of their

offices and mail them a copy of The Late Talker book!

[Guest guest]

(()) I am so sorry that the appointment didn't go as well as

you had hoped. I never saw Dr. Challman (boy, did I mess up his name

in my prior post!!LOL) but he sounds to diagnose the same as Dr.

Myers. Dr. Myers did spend about 2 hours with us at our appointment,

but he would do the same-ask Amber once or twice and if she didn't do

it he wouldn't give her credit if I told him she could do it at

home. He said that a child who mastered a skill should be able to

transfer teh skill to any setting. Unlike our SLP's, they do all of

their testing at once which leads to a tired, cranky child who is

less than cooperative.

Originally Dr. Myers told me that Amber was not MR (I think we saw

him when she was about 18 or 2) because she was so social, etc etc.

AT her latest appointment when she was 4, he told me that if he had

to classify her now, based on her current abilities he would give her

an MR diagnosis. He told me that as she ages it is less likely that

she would outgrow her cognitive deficit. However, she has such

severe motor planning issues that I am still holding out hope that

when it finally " clicks " for her that her true cognition will come

out. Trust me, it was like a knife in my heart when he said it to

me. But, we were able to increase all of our services based on the

scripts that he gave me.

I am sorry that he didn't spend much time with you and that you

walked away feeling like you didn't get any answers. Both Myers and

Challman specialize in ADHD and Autism so I don't think they are

qualified to diagnose with true apraxia (as opposed to

their " components of apraxia " that they like to say) and how it can

impact a child's cognitive output. However, Myers was able to tell

me that while Amber does have behavioral issues he doesn't believe it

is PDD-NOS (which is what she was diangosed with to get her a TSS

under the autism program).

If you ever want to chat, feel free to e-mail me anytime. I don't

know what part of PA you are from (I am in NE PA) but if I can be of

any help with anything or just lend an ear, let me know

>

> , Tina, Myra, , anybody!

>

> Amber's evaluation sound just like Jade's went today. She did see

> Dr. Chaullman and he did say he feels Jade is severly delayed in

her

> cognitive development. He went on to say he doesn't feel she has

> Apraxia as a whole, maybe some parts of it, no Autism, a couple of

> things he feels can fall within the spectrum disorders, but not

> enough to say anything that has to do with Autism.

> It felt like I was talked around a diagnosis and he wants to see

her

> again in 6 months. He did also give her a harsh cognitive score.

> We drove almost two hours to get there, Jade was so cranky and

tired

> from not getting enough sleep and was very uncooperative. I do also

> feel its not fair to judge her on one possible 30-40 minute

> interaction with her, whereas her therapist work with her weekly

and

> can get her to do the things that he wanted her to do. It may take

> some repeating and prompting and directing, but it will get done

> eventually. The doctor asked Jade to do things once or twice and

> when she wouldn't, he was writing away on his pad.

>

>

> I did not even bother to make a fuss about the fish oils being Jade

> has only been on them for a week and I did tell him that she takes

> them and he said well it wouldn't hurt. He just pushed apraxia

aside

> repeatedly so I felt he wouldn't want to listen to any of my tales

> of increased babbling in the last two weeks. I left feeling like I

> wasn't sure if I should keep giving her the oils, but I have

decided

> that I am going to. To hell with him ! (sorry for venting)

>

> What I do know is that I heard him say developmental delays and

that

> if she did not improve by the time she is three or four, he would

> call that mental retardation. After I my heart started beating

> again, I just started to feel like I want to know why my daughter

> can't talk and you are not telling me why. He also stated that he

> wants her tested for Fragile X, but I was told that is hereditary

> and I know the hospital tests you for that when you are pregnant,

so

> I am leaning away from that. He also wants a test on chromosones

and

> blood work done. He said they still might be able to tell me what

is

> wrong after all of that.

>

>

> Can anyone tell me in an apraxic child, do you feel that the childs

> other abilities are more at age level?

> For instance, Jade doesn't follow commands, like go and bring me

> your shoes, go and get your cup and your shoes. He said that if her

> cognitive skills were at a 30 month old level and the speech was

> delayed, he would feel comfortable saying that it was apraxia.

> I asked him if her making mouth movements with no sound coming out

> comes from something other than apraxia, he says well that can be

> part of apraxia, but there is a deeper issue.

>

> The same as Amber, he was very harsh in his cognitive scoring.

>

> He said her speech was at an 8 month old level and her cognitive

was

> at ten month old level. He said that 10 month olds should be able

to

> get things when asked. I think that is a bit early to expect that,

> but hey what do I know?

>

> I am anxious to see what he is going to write in his report since

he

> says she has nothing basically.

>

> What I am going to do is try and have the evaluation done again in

> New York before Jade's insurance runs out and see if that person

> says the same that he does. It doesn't help to hear therapist say

> that she is at a 2 year old level and for him to say she is barely

> at a one year old level. I am completely and utterly confused.

>

> So can anyone tell me if there apraxic children always function

> normally cognitively and fall way below in their speech?

>

>

>

>

[Guest guest]

Tina and -I am so sorry!!! I guess I didn't post enough the

importance of seeing not just any neuroMD -but one who has a clue.

Your examples are what happens when you see one that doesn't.

Dr. Myers says " a child who mastered a skill should be able to

transfer teh skill to any setting. " Well the word " mastered " could

mean they overcame conditions such as apraxia or selective mutism

etc. which have separate and very real reasons why a child may not

always perform on command in " every setting " But does he know about

either of them for just two examples why a child may not transfer

skills to every setting? What if a smart child just didn't like him?

And diagnosing MR at 18 months...

or 2 years old, especially in a child with signs of a motor planning

disorder? And saying a child is not MR because she's " too social " ?

As much as I'd like to agree that some of the nasty people out there

who judge a babies cognitive ability on how much they smile are in

some way MR -don't think that's how IQ works.

But at least even if Dr. Myers doesn't give advice you can take to

the bank -he gives you hope right? Oh wait not right...

You say " AT her latest appointment when she was 4, he told me that

if he had

to classify her now, based on her current abilities he would give her

an MR diagnosis. He told me that as she ages it is less likely that

she would outgrow her cognitive deficit. "

Did he know she has " severe motor planning issues " and that motor

planning has nothing to do with IQ? And do you know that if your

child is diagnosed as MR the " many services " may be there now at 4 -

but don't expect them down the road because after all (example) Mrs

, " your child is mentally retarded and no matter how much

speech therapy we give her she'll never talk " Check the archives

that is why they are there. Get rid of that MR label yesterday -or

at the latest ASAP NOW! Boy do you need another exam with a doctor

who has a clue! Let me put if this way...you say both of them

specialize in autism and ADHD -if I had a child with autism (and I

do have a child with ADHD) you wouldn't catch me taking my child to

either of them if they were the last doctors on the planet based on

what either of you wrote here. And if you are from PA -you are so

close to a slew of MDs who are very knowledgeable about apraxia,

autism, ADHD...children.

And the increased babbling is awesome!! Don't let this

unknowledgeable doctor poorly judge your child. Second opinions for

both of your babies is my recommendation. You know not that long

ago we had a heated conversation about Dr. Agin and her fees. The

two of these doctors slams home the reason of why it's so important

to take your child to MDs who are knowledgeable. Because it's

priceless. My apologies to both of you for what you went through.

Please don't let them give up hope on your babies. I bet if either

of these MDs saw Tanner when he was a baby they would have found him

to be cognitively delayed as well since in addition to severe oral

and verbal apraxia he also had hypotonia and sensory integration

dysfunction and with his oral apraxia appeared to have no expression

most of the time (so didn't look very social) It makes me so

angry. Oh -and Tanner's in mainstream 3rd grade today and just

tested 5th grade level for math and creative writing and something

else I can't remember -visual memory recall? -and on 4th grade level

for everything else.

Don't make assumptions about a child's learning difficulty. Here's

a recent article even saying that about a 5 year old! Wonder what

this doctor would say about what these doctors are saying about 18

month olds with suspected apraxia! Fax this to both of their

offices and mail them a copy of The Late Talker book!

By Dr. YVONNE FOURNIER

Scripps News Service

26-JAN-06

DEAR DR. FOURNIER: My 5-year-old has been diagnosed with auditory

processing disorder. He is reading first- and second-grade books but

has difficulty understanding what is being said to him. His speech

is delayed and he has been in speech therapy. I would like to know

if there is any type of therapy to treat his problem.

THE ASSESSMENT: When I interview parents, I am amazed at how many

can recite exactly when their children sat up, crawled, walked and

talked. In today's educated society, parents and professionals are

often on the lookout for developmental processes, knowing exactly

when each milestone should be achieved.

The danger in setting a strict schedule of achievement is that it

can leave us with the hope that all skills have such a clear-cut

beginning and end. This " hope for " and " it's over " schedule can be

overextended into abilities that do not run on any timed schedule.

When a skill does not develop " by the book, " it is labeled a

disorder and the child is deemed developmentally delayed.

Although many older students and adults can be accurately diagnosed

with learning differences, it is difficult to diagnose a

developmental disorder early in a child's life. It could be a delay

in your child's overall development or it could be a

delay " localized " to a specific developmental area, such as

language. It could also be a general delay, such as cognitive

function, that is masked by a more obvious one, such as speech.

Your child may well need help with auditory processing, but it is

important to think of multiple reasons before settling on one

solution too early.

WHAT TO DO: Think of developmental processes that could be at the

root of your child's learning difference. Start by writing a list of

possible reasons why your child cannot already do what you expect.

Problem: " My child has difficulty understanding what is said. "

Possible reason: My child has a speech delay. He might not have

enough language to be able to understand what is said. Solution:

Patience.

Possible reason: My child has had many ear infections and is used to

not paying attention because of transitory hearing loss. Solution:

Tell my child to look at me when I talk to him to learn to listen.

Possible reason: My child's speech delay might be the earliest sign

of a developmental language disorder. Solution: He might need

language therapy rather than speech therapy.

Possible reason: My child might need more time to process what he

hears. He might need time to develop auditory processing with

expected speed. Solution: Do not expect immediate responses.

As parents, we are blessed with the opportunity to see so many of

our children's developmental processes blossom before us. We must be

careful not to let these blossoms make us believe that the slower-

growing ones are of a different species. Only when your calm

responses do not resolve your concern, consult with a developmental

pediatrician for your next step.

(Write Dr. Fournier, Fournier Learning Strategies Inc., 5900

Poplar, Memphis, Tenn. 38119. E-mail YF7thsense(at)aol.com.)

http://www.shns.com/shns/g_index2.cfm?action=detail & pk=HOMEWORK-FAM-01-26-06

=====

[Guest guest]

Wow, does this sound like appointments with my son's first dev ped. Though he

was the first one to use the word Apraxia though I don't think he really knew

much about it just that it was a diagnosis that the insurance would cover speech

for. Dade speech therapist gave me one of the best things to live by. Who

cares if an eval comes back worse than I know he can do if it gets him more

services. Dade had horrible cognitive delays but the kid didn't talk and has

receptive language delays too. He is now 4. Still with delays everywhere.

Global apraxia and autism(high functioning) And he know all his colors, shapes

and letters. He can spell his name so he is so not MR. I've heard the don't

use MR until at least 5 but more like 7 before they can say that it's not just

developmental delays.

Nichole

Mom to Dade 11/29/01 and Leia 2/7/04

[ ] AFTER THE DEV. PED. VISIT

, Tina, Myra, , anybody!

Amber's evaluation sound just like Jade's went today. She did see

Dr. Chaullman and he did say he feels Jade is severly delayed in her

cognitive development. He went on to say he doesn't feel she has

Apraxia as a whole, maybe some parts of it, no Autism, a couple of

things he feels can fall within the spectrum disorders, but not

enough to say anything that has to do with Autism.

It felt like I was talked around a diagnosis and he wants to see her

again in 6 months. He did also give her a harsh cognitive score.

We drove almost two hours to get there, Jade was so cranky and tired

from not getting enough sleep and was very uncooperative. I do also

feel its not fair to judge her on one possible 30-40 minute

interaction with her, whereas her therapist work with her weekly and

can get her to do the things that he wanted her to do. It may take

some repeating and prompting and directing, but it will get done

eventually. The doctor asked Jade to do things once or twice and

when she wouldn't, he was writing away on his pad.

I did not even bother to make a fuss about the fish oils being Jade

has only been on them for a week and I did tell him that she takes

them and he said well it wouldn't hurt. He just pushed apraxia aside

repeatedly so I felt he wouldn't want to listen to any of my tales

of increased babbling in the last two weeks. I left feeling like I

wasn't sure if I should keep giving her the oils, but I have decided

that I am going to. To hell with him ! (sorry for venting)

What I do know is that I heard him say developmental delays and that

if she did not improve by the time she is three or four, he would

call that mental retardation. After I my heart started beating

again, I just started to feel like I want to know why my daughter

can't talk and you are not telling me why. He also stated that he

wants her tested for Fragile X, but I was told that is hereditary

and I know the hospital tests you for that when you are pregnant, so

I am leaning away from that. He also wants a test on chromosones and

blood work done. He said they still might be able to tell me what is

wrong after all of that.

Can anyone tell me in an apraxic child, do you feel that the childs

other abilities are more at age level?

For instance, Jade doesn't follow commands, like go and bring me

your shoes, go and get your cup and your shoes. He said that if her

cognitive skills were at a 30 month old level and the speech was

delayed, he would feel comfortable saying that it was apraxia.

I asked him if her making mouth movements with no sound coming out

comes from something other than apraxia, he says well that can be

part of apraxia, but there is a deeper issue.

The same as Amber, he was very harsh in his cognitive scoring.

He said her speech was at an 8 month old level and her cognitive was

at ten month old level. He said that 10 month olds should be able to

get things when asked. I think that is a bit early to expect that,

but hey what do I know?

I am anxious to see what he is going to write in his report since he

says she has nothing basically.

What I am going to do is try and have the evaluation done again in

New York before Jade's insurance runs out and see if that person

says the same that he does. It doesn't help to hear therapist say

that she is at a 2 year old level and for him to say she is barely

at a one year old level. I am completely and utterly confused.

So can anyone tell me if there apraxic children always function

normally cognitively and fall way below in their speech?

[Guest guest]

Thank you so much !! I really did like Dr. Myers but I knew that

he was not qualified to make any " real " diagnosis on Amber (not his

specialty!!). To be fair to Dr. Myers, he never brought up MR until

I pushed him into telling me whether or not she was. He kept telling

me that until she has the ability to take a true IQ test (both verbal

and behavioral components are missing) that there was no way he could

give me a difinitive answer. When I continued to ask him about kids

with delays like Amber's at this age and how they faired out later in

life, he said that " based on the level of consistent delays she is

showing, that she does fall into the MR category " . He never

documented in her files anywhere (since it wasn't a firm diagnosis)

and never put that on her scripts. Her diagnosis on her scripts for

insurance purposes is somethign like " severe motorplanning

deficits " . He did say as she ages and continues to show significant

delays, her chances of not being MR decrease (I can't remember

exactly how he phrased it but that is what I walked away with).

Honestly, I am not angry with him at all, because Amber does present

with a lot of delays (she is also showing a receptive language delay,

but a mild one-but a delay nonetheless) and I dont' think anyone can

know for sure what her future holds. I look at my little girl and

the way she interacts and I do get a sinking feeling that maybe she

is always going to be a little " slower " , and I am ok with that

(well,it took me lots of time and tears to be ok). Maybe that is why

she never seemed to " surge " when on teh Pro-EFA's-maybe she is one of

those kids who would have had apraxia anyway (but, I am really trying

to overcome the diarhea to get her back on them-maybe since she is

older I will see some improvement).

Of course, I knew enough not to just blindly follow what he says

(because he is not an apraxia expert) so maybe that is why I am not

angry-I know enough to continue my search for answers. I guess if I

were the type of parent to put my full trust into any specialist,

then I would really have been screwed by seeing him. Fortunately I

had already read your book and did hundreds of hours of research on

my own so I knew that she had more than he was capable of diagnosing

(mainly her apraxia). Not to say taht I wasn't crushed at first when

I got his written report. It's just that in our area, his written

reports and scripts held alot of weight in obtaining additional

services from EI. He wrote EI a letter back when Amber was about two

detailing how many hours of each service she needed and it was

approved without question (and we got 3 additional hours of service a

week). I guess I look at him as a very caring doctor who did get us

what we needed at the time. I honestly can't say anything bad about

him, other than the fact that he is not an apraxia specialist.

I just didn't want you to think that he was throwing out the MR label

without a formal test. I am the one who kept pressuring him to

answer my question and just tell me his " thoughts " (and let's just

say I wouldn't accept not answering me!!LOL). He did tell me that

when she turned 5 that he would have a test performed on her, but I

am not even going to schedule it because I am sure it won't be a test

geared towards non-verbal (or extremely expressively delayed kids

like Amber). I am going to wait for any formal testing until we see

Dr. Agin and go from there (and I would never share any formal

diagnosis of MR because of the exact reason you stated-it could be

used against us in the future).

But, you are definitely right and that anyone with an apraxic child

does need to see someone specially trained in apraxia.

[Guest guest]

At the appt., I was saying to myself there are different types of

apraxia, but he

just wrote it off so quickly. You are right, if it can get Jade

more services than I am all for it, but I am going to get a second

opinion also.

>

> Wow, does this sound like appointments with my son's first dev

ped. Though he was the first one to use the word Apraxia though I

don't think he really knew much about it just that it was a

diagnosis that the insurance would cover speech for. Dade speech

therapist gave me one of the best things to live by. Who cares if

an eval comes back worse than I know he can do if it gets him more

services. Dade had horrible cognitive delays but the kid didn't

talk and has receptive language delays too. He is now 4. Still

with delays everywhere. Global apraxia and autism(high

functioning) And he know all his colors, shapes and letters. He

can spell his name so he is so not MR. I've heard the don't use MR

until at least 5 but more like 7 before they can say that it's not

just developmental delays.

> Nichole

[Guest guest]

Thanks ,

I walked away from that appointment losing all hope. I was actually

saying to myself, okay if it's not autism, it's not ASD, it's not

Pdd-nos, it's not apraxia, is he actually saying she is or will be

mentally retarded? I remember asking him if there was a chance that

Jade would ever talk if he felt she was so delayed in the areas he

discussed, and he said well some children that have such a delay in

cognitive delays don't.

I just felt like giving up, but after reading this post again,

I have hope again. I will admit that I was thrown by his thoughts

and my mind was saying speak up stupid!!

Ask him about severe motor planning, the different types of apraxia

you see on the post, the sensory problems. I thought to myself why

does my OT make such a big deal about the brushing technique, why

does she say it does matter that Jade doesn't like to brush her

teeth or brush her hair. These are sensory matters.

WHY IS HE NOT EVEN MENTIONING THESE THINGS TO ME? WHY IS HE NOT

COMMENTING ON THEM WHEN I MENTION THEM???

And you know if you are not completely sure of your thoughts, a

doctor can talk circles around you. I will have lots to speak to

speak about to her ST and OT when I see them next week.

I asked him if there a name for what he said Jade has and he said

there is not really a secific name for her delays, but he did say

that if she was the same at 4 he would call that mental retardation.

I was thinking to myself, I have seen posts where parents have said

all that their child would say was " mmmmmmmmm " and went on to speak

later, but he just wasn't interested in my thoughts in apraxia

because Jade has cognitive delays. The doctor said if it were

Apraxia, she would be on her age level in cognitive areas and way

lower in her receptive and expressive communication.

, when I asked about Dr. Agin, I in no way was trying to

question her fees. I just thought that maybe the money would have

gone better to private therapy than to a one time Dr's. appt., but I

see why a visit to Dr. Agin would be worth it. I know that some

parents that would be able to afford her fee would also be able to

pay for private therapy or have better insurance than I do.

How I wish I had the money to go for her three hour evaluation,

viewing of video tapes of Jade's babbling and attempts to talk, etc.

I wish I was able to afford the fee.

I am going to send him a copy of that article you sent me and I am

even going to send him my copy of the Late Talker, and tell him he

better send it back !

>

> Tina and -I am so sorry!!! I guess I didn't post enough

the

> importance of seeing not just any neuroMD -but one who has a clue.

> Your examples are what happens when you see one that doesn't.

>

> Dr. Myers says " a child who mastered a skill should be able to

> transfer teh skill to any setting. " Well the word " mastered "

could

> mean they overcame conditions such as apraxia or selective mutism

> etc. which have separate and very real reasons why a child may not

> always perform on command in " every setting " But does he know

about

> either of them for just two examples why a child may not transfer

> skills to every setting? What if a smart child just didn't like

him?

> And diagnosing MR at 18 months...

> or 2 years old, especially in a child with signs of a motor

planning

> disorder? And saying a child is not MR because she's " too

social " ?

> As much as I'd like to agree that some of the nasty people out

there

> who judge a babies cognitive ability on how much they smile are in

> some way MR -don't think that's how IQ works.

>

> But at least even if Dr. Myers doesn't give advice you can take to

> the bank -he gives you hope right? Oh wait not right...

>

> You say " AT her latest appointment when she was 4, he told me that

> if he had

> to classify her now, based on her current abilities he would give

her

> an MR diagnosis. He told me that as she ages it is less likely that

> she would outgrow her cognitive deficit. "

>

> Did he know she has " severe motor planning issues " and that motor

> planning has nothing to do with IQ? And do you know that if your

> child is diagnosed as MR the " many services " may be there now at

4 -

> but don't expect them down the road because after all (example)

Mrs

> , " your child is mentally retarded and no matter how much

> speech therapy we give her she'll never talk " Check the archives

> that is why they are there. Get rid of that MR label yesterday -

or

> at the latest ASAP NOW! Boy do you need another exam with a

doctor

> who has a clue! Let me put if this way...you say both of them

> specialize in autism and ADHD -if I had a child with autism (and I

> do have a child with ADHD) you wouldn't catch me taking my child

to

> either of them if they were the last doctors on the planet based

on

> what either of you wrote here. And if you are from PA -you are so

> close to a slew of MDs who are very knowledgeable about apraxia,

> autism, ADHD...children.

>

> And the increased babbling is awesome!! Don't let this

> unknowledgeable doctor poorly judge your child. Second opinions

for

> both of your babies is my recommendation. You know not that long

> ago we had a heated conversation about Dr. Agin and her fees. The

> two of these doctors slams home the reason of why it's so

important

> to take your child to MDs who are knowledgeable. Because it's

> priceless. My apologies to both of you for what you went

through.

> Please don't let them give up hope on your babies. I bet if

either

> of these MDs saw Tanner when he was a baby they would have found

him

> to be cognitively delayed as well since in addition to severe oral

> and verbal apraxia he also had hypotonia and sensory integration

> dysfunction and with his oral apraxia appeared to have no

expression

> most of the time (so didn't look very social) It makes me so

> angry. Oh -and Tanner's in mainstream 3rd grade today and just

> tested 5th grade level for math and creative writing and something

> else I can't remember -visual memory recall? -and on 4th grade

level

> for everything else.

>

> Don't make assumptions about a child's learning difficulty.

Here's

> a recent article even saying that about a 5 year old! Wonder what

> this doctor would say about what these doctors are saying about 18

> month olds with suspected apraxia! Fax this to both of their

> offices and mail them a copy of The Late Talker book!

>

> By Dr. YVONNE FOURNIER

> Scripps News Service

> 26-JAN-06

>

> DEAR DR. FOURNIER: My 5-year-old has been diagnosed with auditory

> processing disorder. He is reading first- and second-grade books

but

> has difficulty understanding what is being said to him. His speech

> is delayed and he has been in speech therapy. I would like to know

> if there is any type of therapy to treat his problem.

>

> THE ASSESSMENT: When I interview parents, I am amazed at how many

> can recite exactly when their children sat up, crawled, walked and

> talked. In today's educated society, parents and professionals are

> often on the lookout for developmental processes, knowing exactly

> when each milestone should be achieved.

>

> The danger in setting a strict schedule of achievement is that it

> can leave us with the hope that all skills have such a clear-cut

> beginning and end. This " hope for " and " it's over " schedule can be

> overextended into abilities that do not run on any timed schedule.

> When a skill does not develop " by the book, " it is labeled a

> disorder and the child is deemed developmentally delayed.

>

> Although many older students and adults can be accurately

diagnosed

> with learning differences, it is difficult to diagnose a

> developmental disorder early in a child's life. It could be a

delay

> in your child's overall development or it could be a

> delay " localized " to a specific developmental area, such as

> language. It could also be a general delay, such as cognitive

> function, that is masked by a more obvious one, such as speech.

>

> Your child may well need help with auditory processing, but it is

> important to think of multiple reasons before settling on one

> solution too early.

>

> WHAT TO DO: Think of developmental processes that could be at the

> root of your child's learning difference. Start by writing a list

of

> possible reasons why your child cannot already do what you expect.

>

> Problem: " My child has difficulty understanding what is said. "

>

> Possible reason: My child has a speech delay. He might not have

> enough language to be able to understand what is said. Solution:

> Patience.

>

> Possible reason: My child has had many ear infections and is used

to

> not paying attention because of transitory hearing loss. Solution:

> Tell my child to look at me when I talk to him to learn to listen.

>

> Possible reason: My child's speech delay might be the earliest

sign

> of a developmental language disorder. Solution: He might need

> language therapy rather than speech therapy.

>

> Possible reason: My child might need more time to process what he

> hears. He might need time to develop auditory processing with

> expected speed. Solution: Do not expect immediate responses.

>

> As parents, we are blessed with the opportunity to see so many of

> our children's developmental processes blossom before us. We must

be

> careful not to let these blossoms make us believe that the slower-

> growing ones are of a different species. Only when your calm

> responses do not resolve your concern, consult with a

developmental

> pediatrician for your next step.

>

>

> (Write Dr. Fournier, Fournier Learning Strategies Inc.,

5900

> Poplar, Memphis, Tenn. 38119. E-mail YF7thsense(at)aol.com.)

> http://www.shns.com/shns/g_index2.cfm?action=detail & pk=HOMEWORK-

FAM-01-26-06

>

> =====

>

[Guest guest]

Thanks ,

And for anyone who thinks " so what if they diagnose my child

as... " autistic " " MR " or whatever just to secure services. If it's

not the appropriate diagnosis it's never appropriate to secure

services this way. Many of us including me had to fight the hard

fight to secure services for a " speech impaired " child. It is

harder -but yes even a speech impaired child is entitled to services

even if some claim (lie) and say that isn't so. Push them and

you'll find the truth.

Below is (once again) not only an archived update from Robin about

-a child also from PA misdiagnosed from early childhood as

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

In addition and perhaps more important -is an article from " Dr. Bob "

a school psychologist -who wrote about the appropriate way to test

children with motor planning disorders. A must read and keep:

You know so important -I'll post it twice

" Summary of assessment procedures

Children with significant language and motor skills delays

E. Friedle, Ph.D.

Clinical/Neuropsychologist

Formalized assessment of children with low incidence disablitities

does not

often provide accurate or practical information about their cognitive

functioning skills. Such assessmenet does provide evidence that

these

children often have not learned how to respond in direct one-to-one

reciprocal testing situations, or that they are unable to respond in

those

situations due to the nature of their disabilities. The lack of

response

should not be considered then, necessarily, as a global and fixed

delay in

cognitive/intellectual potential. Developmental theorists and

practitioners

have long known that cognitive growth is not only enhanced, but also

dependent upon opportunities to experience a wide variety of sensory

stimuli

in an interactive relationship. Problem solving skills, analytical

reasoning, and decision-making are all formalized, cognitively, when

integration of information is ongoing. Language and motor skill

limitations

often prevent the integration and experiences and thus certain

cognitive

growth waits until such experiences may be provided. Children may

have

learned to problem-solve and reason in ways that are not assessed by

formalized evaluations and are only recognizable when the child is

allowed

to experience sensory information in a manner most productive to

them. It

is often then necessary for the examiner to assess what

opportunities and

experiences the child may have had already, how an assessment may

prompt the

child to show what they can do with various stimuli and how problem

solving,

analytical, and decision making skills can be exhibited by a child

in a

non-formalized approach.

The purpose of an assessment request has to be relevant to the child

and to

their experiences, i.e. the child needs to see some purpose for

providing a

response. A very simple example of this premise is: asking them to

name an

object may result in no response, but asking them to get the object

may show

a knowledgeable response.

Children with language and motor deficits often play within the

restrictions

that their limitations have presented and this " changed " pattern of

play,

from what is seen with non-disabled children, can be a direct

reflection of

their ability to problem solve and reason in play. An example for

this may

be when a child finds that laying things down and flat makes it

easier to

manipulate, or that moving things closer or out of the way

facilitates motor

planning and play. Often the child may see no purpose to expand

experiences, or have not figured out independently how to change

their play

patterns.

Restrictions in movement or language limit the experiences a child

has had

with objects and stimuli. The need to practice simple movements, to

hear

the words that go along with those movements, and then to ask a

child to

duplicate the movements and/or the words can greatly facilitate

cognitive

growth. If a child can readily make such duplicated responses then

the

potential for cognitive growth at that point presents no

limitations. An

examiner can lead the play situation in these types of activities

and note

the ability of the child to engage in the " play " at a different

level. The

purpose is then presented clearly for the child, both for the

language and

for the movement, and thus becomes an active part of their

developmental

growth and understanding. Sometimes showing them or asking them to

change

their approach results in a larger perspective of possibilities in

play.

The examiner is an active participant in the assessment approach,

engaged

with the child in the semi-directed play type of assessment. The

examiner

notes closely when a child shows a lack of understanding of the

language

presented or an inability to make the movements requested. At all

times the

examiner is assessing how well the child appears to follow the

purpose of

the activity or the change in direction of an activity. "

kiddietalk@...

From: " Ketchem " <rcketchem@...>

Subject: Fwd: [ ] Re: Autism is a World ~ just

nominated for an -

Date: Wed, 26 Jan 2005 10:39:50 -0500

>

>

> Hi ,

>

> Well we finally made it to Georgia! We are now living in the

Buford

> area and so far we really like the area. We are very fortunate to

be

> able to have begin working with Zimet a wonderful

> speech therapist. Currently we are communicating by phone and e-

mail

> with regards to what type of program that needs

> to be developed for . will be meeting next

> month and reviewing the therapy program that has been

working

> very hard on. really is taking into consideration my

> thoughts and feelings and that really makes me feel apart of the

new

> team that we are developing.

>

>

> did have her day in court on August 10th for her federal

> lawsuit. She was very fortunate to have a wonderful federal judge

who

> really understood what life had been like for her with regards to

the

> school district and the IU. He scheduled a presettlement

conference

> and held the conference in his federal court for the day.

> We were asked to come to court that day with a cooperative spirit

to

> try and settle the case. We did just that and settled the case.

It

> took 8 hours in court but finally came to an agreement. We

actually

> let Mel tell us when she felt it was best. 's attorney

kept

> coming in with a different offer and the last offer he explained

it

to

> and looked right at him and said " ok " " done " . The

> attorney looked at us and we said we wanted to have

closure

so

> she could go on with her life and we respected Mel's decision.

Mel

> now has a nice trust fund that will help her with her new

program.

It

> was nice as when we went up to meet the judge he

> truly did not know which one was out of our three

daughters.

> That really made the judge think as well. When he read the

settlement

> agreement into record for everyone to hear Mel just sat there very

> calm and smiling. Mel knew it was over. The judge also made some

> closing remarks that were very powerful for

> Mel to hear. Those remarks he made that day sent a very powerful

> message to Mel and our family.

>

> has been apart of a team of doctors doing a study on PTSD

and

> the individual that has PTSD and the family that supports that

> individual. I was shocked to hear that is the only one

home

> at this time and recovering from her PTSD so nicely. The other

kids

> are either in group homes or are in residential

> school settings with really no hopes of returning home. Mel had a

> very very severe case of PTSD but with the love and support of her

> family you would never know today she even has it. Every time I

speak

> with this set of doctors, I am more determined to try and help

other

> families.

>

> is now recovering nicely from her past experiences and

> starting to move forward. has regained all of her motor

> planning tasks that she lost for so many years and she is saying

more

> and more words. 's old personality has once again emerged

and

> she is happy and enjoying life each day.

> is really enjoying living in Georgia away from the school

> district and the IU personnel. 's doctors believe that our

> moving will help one day communicate without support.

Mel's

> PTSD really took a large toll on Mel's motor planning and her

> communication. now lives without fear

> that one day someone from the school or IU is going to come and

get

> her like they told her so many times.

>

> One of the most exciting changes we have seen in is that

she

> now wants to join in for family game night. Our other two

daughters

> like to play dominoes. now has joined us in playing and

she

> plays without any support. She has watched us for several years

now

> playing but never really wanted to play.

> Mel had no trouble understanding the game right when she started

to

> play. This proved to us that is absorbing everything

thing

> around her but unable to express herself due to her global apraxia

but

> somehow she has the power to over come her apraxia and play

dominoes.

> This proved to our family

> that Mel has so much to offer and it is our job to help Mel

overcome

> her apraxia.

>

> We now feel is the time that Mel will really begin to move forward

> with her sever global apraxia. and will make a

great

> team and together one day will be able to share her story

with

> the world and help others. We truly believe the story needs to

come

> from so others can be helped.

> I think about all the kids that are in Mel's situation now and I

truly

> want help for all of them. and I will keep great notes

during

> 's therapy program so hopefully one day we can develop a

> program that can be used for older children and adults. There are

a

> handful of professionals that believe

> in our older children but not enough.

>

> I will keep you informed of Mel's progress. I truly hope one

day

> Mel will be communicating herself with you and you can ask Mel

> questions and Mel will be able to answer them herself. I believe

one

> day Mel will be at that point but she has a lot of hard work ahead

of

> her but she also has the determination that

> it will take work hard each and every day.

>

> does use facilitated communication and is using it once

again

> at home. wants to have support her thru

facilitated

> communication for the sole purpose of learning Mel's

movement

> when typing. Mel wants to develop a program that will

enable

> her to type without support due to

> Mel's negative experience with facilitated communication and the

> school district/IU personnel. I am also contacting families that

> have children who are using facilitated communication and trying

to

> get ideas for typing without support. Mel at one point was so

close

> to typing without support so we hope to get

> her back to that point once again.

>

>

> I also have a new e-mail address rcketchem@... since

the

> move. Please e-mail with any questions you may have.

>

> Take care,

>

> Robin

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

Date: Fri Jan 28, 2005 8:50 pm

Subject: Re: & Tricia - Help with Assessment Tests

Theresa there really are no tests that will 100% be perfect to test

the receptive ability of a speech disabled child -at least one needs

to be developed (would be nice)

Also as we state in The Late Talker -tests used are important -but

the professional chosen to do the testing is at times just as

important.

The hardcover of The Late Talker had so much cut from it because the

publisher didn't want to overwhelm parents of two year old " late

talkers " I agree much of the stuff for older children who truly are

speech impaired is overwhelming for someone who may not even need

that information who has an undiagnosed two year old child with a

speech delay. We (the authors) pushed to add a bit more to the

paperback version of the book -so a bit more on testing in the PB.

I'll retype that part of the book from around page 44 (I

unfortunately have the book and drafts on another computer right

now, and type faster than it would take me to get to that one -so

may be typos in my retype)

" Usually the SLP uses a " standardized " speech -language test, one

with " norms " based on a large sample of typically developing

children. This allows the SLP to assess where your child stands

compared to other children of his age. Since young children are not

always cooperative in sitting through standardized tests, a more

informal evaluation through play may be done. You are then given an

estimate of your child's standing, based on the SLP's training,

knowledge, and experience -her " informed clinical opinion. "

Make sure the testing conditions work for your late talker.

children with speech and expressive language impairments obviously

score less well on a receptive test that requires verbal responses.

It is possible to do speech and language testing for receptive

ability even with children that are essentially nonverbal. In these

cases, the examiner can look at other forms of functional

communication, including the use of gestures, formal sign language,

pictures, and augmentative communication devices.

Here are the more popular language tests or scales that your SLP may

use:

Rossetti Infant Toddler Language Scale (birth to three years)

Preschool Language Scale -3 (PLS-3) (birth to six years)

Clinical Evaluation of Language Functions (CELF) -Preschool (three

through six year) and CELF 3 (six through twenty one)

Receptive One-Word Picture Vocabulary Test (ROWPVT) (two through

eighteen years)

Expressive One-Word Picture Vocabulary Test -Revised

(EOWPVT) (two through twelve years)

Test of Early Language Development-3 (TELD-3) (two through seven

years) "

And then

" Two tests designed more specifically to evaluate children with

motor planning disorders are the Kaufman Speech Praxis Test for

Children (KSPT) and the Verbal Motor Production Assessment for

Children (VMPAC) The KSPT is an assessment tool for kids age twenty-

four to seventy-one months. It measures the child's imitative

responses, identifying where the child breaks down in her ability to

speak, and ranges from simple sounds to polysyllabic words to

spontaneous connected speech. The VMPAC targets an older age group,

three to twelve year olds, measuring motor speech abilities by first

looking at basic processes, like breath support and muscle tone, and

then moving to complex sequencing of syllables. "

And from the " Visiting the Doctor " section of the chapter

" Formal cognitive testing is typically performed by a licensed

psychologist or neurophysiologist. Make sure that you are referred

to one who is familiar with testing nonverbal or unintelligible

children and that she uses age-appropriate 'nonverbal' intelligence

tests, such as the Leiter-R for children two years old and up, the

Kaufman Assessment Battery for Children (KABC) for children four

years old and older, the Universal Nonverbal Intelligence Test

(UNIT) for children five years old and above, or Comprehensive Test

of Nonverbal Intelligence (CTONI) for those six and above) "

And...Here is a great message on how to test children who are

globally apraxic from one of our member's (Sherry) child's doctor -

" Dr. Bob " You can use this in addition to what's in The Late Talker

to help advocate. (Hurray for " Dr. Bob " ! The type of

neuropsychologist we all would love to take our child to)

" Summary of assessment procedures

Children with significant language and motor skills delays

E. Friedle, Ph.D.

Clinical/Neuropsychologist

Formalized assessment of children with low incidence disablitities

does not

often provide accurate or practical information about their cognitive

functioning skills. Such assessmenet does provide evidence that

these

children often have not learned how to respond in direct one-to-one

reciprocal testing situations, or that they are unable to respond in

those

situations due to the nature of their disabilities. The lack of

response

should not be considered then, necessarily, as a global and fixed

delay in

cognitive/intellectual potential. Developmental theorists and

practitioners

have long known that cognitive growth is not only enhanced, but also

dependent upon opportunities to experience a wide variety of sensory

stimuli

in an interactive relationship. Problem solving skills, analytical

reasoning, and decision-making are all formalized, cognitively, when

integration of information is ongoing. Language and motor skill

limitations

often prevent the integration and experiences and thus certain

cognitive

growth waits until such experiences may be provided. Children may

have

learned to problem-solve and reason in ways that are not assessed by

formalized evaluations and are only recognizable when the child is

allowed

to experience sensory information in a manner most productive to

them. It

is often then necessary for the examiner to assess what

opportunities and

experiences the child may have had already, how an assessment may

prompt the

child to show what they can do with various stimuli and how problem

solving,

analytical, and decision making skills can be exhibited by a child

in a

non-formalized approach.

The purpose of an assessment request has to be relevant to the child

and to

their experiences, i.e. the child needs to see some purpose for

providing a

response. A very simple example of this premise is: asking them to

name an

object may result in no response, but asking them to get the object

may show

a knowledgeable response.

Children with language and motor deficits often play within the

restrictions

that their limitations have presented and this " changed " pattern of

play,

from what is seen with non-disabled children, can be a direct

reflection of

their ability to problem solve and reason in play. An example for

this may

be when a child finds that laying things down and flat makes it

easier to

manipulate, or that moving things closer or out of the way

facilitates motor

planning and play. Often the child may see no purpose to expand

experiences, or have not figured out independently how to change

their play

patterns.

Restrictions in movement or language limit the experiences a child

has had

with objects and stimuli. The need to practice simple movements, to

hear

the words that go along with those movements, and then to ask a

child to

duplicate the movements and/or the words can greatly facilitate

cognitive

growth. If a child can readily make such duplicated responses then

the

potential for cognitive growth at that point presents no

limitations. An

examiner can lead the play situation in these types of activities

and note

the ability of the child to engage in the " play " at a different

level. The

purpose is then presented clearly for the child, both for the

language and

for the movement, and thus becomes an active part of their

developmental

growth and understanding. Sometimes showing them or asking them to

change

their approach results in a larger perspective of possibilities in

play.

The examiner is an active participant in the assessment approach,

engaged

with the child in the semi-directed play type of assessment. The

examiner

notes closely when a child shows a lack of understanding of the

language

presented or an inability to make the movements requested. At all

times the

examiner is assessing how well the child appears to follow the

purpose of

the activity or the change in direction of an activity. "

And...Don't forget the proven " Rosenthal theory " I've written about!

http://www.pineforge.com/newman4study/resources/rosenthal1.htm

=====

[Guest guest]

At 09:50 AM 1/28/2006, you wrote:

>. The doctor said if it were

>Apraxia, she would be on her age level in cognitive areas and way

>lower in her receptive and expressive communication.

How does he measure cognitive areas? How does the receptive and expressive

language not impact a cognitive level test? My son's SLP refuses to even

look at cognitive because she feels his levels would be inaccurate due to

his speech and lang levels, particularly because of his receptive delays.

Miche

[Guest guest]

Thanks for clarifying Tina. I appreciate that you must 'really'

like this doctor and perhaps what you wrote didn't present what he

said exactly, or how the exam went. Perhaps he didn't want to give

you false hope because your child is so severely mentally retarded

and he doesn't want to give you " false hope " ? See for me -I have a

son, Dakota, who was globally delayed and had a very small chance of

ever being " normal " based on top neuroMDs from NJ to NY. But still -

my son's doctors always gave me hope for Dakota and encouraged me to

do all I could do. After all -you look back years from now and

say " I tried everything to give him a chance, but I have to face

reality -he's mentally retarded. " Me? I could never face that with

my son at 2...or 4. Not until I helped him overcome the challenges

I could help with through therapy.

Dakota's page

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

I do believe that as parents we kind of know things about our

children before the tests -in our gut. The parent instinct they

call it I guess, it's typically more on than most of us give it

credit. Not that the gut instinct and the mind don't debate once a

perception of the child is in writing states something we never

thought prior. What was your perception of your child at 17 months

old -prior to seeing any of the professionals you have taken your

child to? Did anyone ever say " look how smart he is he just... "

Perhaps not.

Of course there are those children who are cognitively delayed in

addition to having a speech impairment. It's not the norm -but yes

it happens.

I liked the article I just posted because it states what I so

strongly believe in. In a nutshell give the child the benefit of

the doubt, especially if there are delays in areas such as speech

(and of course motor planning) There are of course differences

between a child not doing something because he or she can't

understand the command, or he or she does understand the command -

but can't get his or her body to do what is wanted.

Question -does your child exhibit frustrations when trying to do

things or say things? See while most parents including me don't

like to see our children frustrated -to me it's also a sign that

they are aware of what they can't do and that's a good thing. Guess

it's the silver lining to the tantrum?

And speaking about parent instinct and never giving up hope and

realizing that frustration (if it's there) can be a great thing -may

want to read this archive: contains the really really true story

(unlike the Million Little " stories " book)

" The Day he knew that would be OK "

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

Date: Wed Dec 25, 2002 12:35 pm

Subject: Re: Proefa side effects/ " The Day he knew that would

be OK " kiddietalk

Dear Brock,

Just wanted to jump in and say I'm sorry that you are not having a

happy day today. I'm not sure why is whiney –could be lots of

reasons like a cold coming on ...or ...he just realized he can't

easily tell Santa what he wanted for Christmas? –which is a good

thing if that is what it is. Why would I say that?

I have a story to tell you that maybe will cheer you up –then I too

have to get back to my relatives!

My ex-boyfriend years ago was in a severe car accident on a

snowy night –his friend was driving –they were just out of high

school. The car went into a skid and the friend lost control of the

car and it went into a snow plow. The snow plow went through the

car's front window –and through 's head/eye/and taking off his

ear. was rushed to the hospital -his father and mother were

told that only had a 2% chance of living –and that even if he

did survive – and - regained consciousness, he will be brain dead.

's parents could afford the best doctors money could buy -and

that was the prognosis from all. With hope -they were told that

the 'best' they could hope for was that within a year they could get

a place in Kessler where -they will teach him how to

put " square pegs in square holes " -I'll never forget his mother

telling me this. didn't die –and went from coma –to semi coma –

to months of not being able to anything for himself. He couldn't

feed himself or dress himself -etc. He was allowed to -after months -

go out with mom and dad once in awhile.

one day 's dad –who is a teacher at FIT in NYC, told me the

following story of " The Day he knew that would be OK "

" I wanted to take to play golf. I knew I wasn't supposed to do

that - wasn't able to do things like that yet, he couldn't even

dress himself yet. It was a beautiful day though and I just wanted

to take him out to smell the fresh air and just try to hit the ball

around a bit. As his father -I knew what was best for him. I knew

couldn't hit the ball or play golf yet -he had trouble even

holding the club -but was so good at golf and really loved

playing it so much before the accident -I just though this would be

good for him.

tried to swing the club -but he couldn't hold the club or swing

it right. He kept trying though over and over. It was painful for

me to watch my son like this -I was about to say let's go. All of a

sudden - threw down the club and threw himself on the ground and

started to cry. At this point -a tear started to roll down 's

dad's face as he said the next sentence " and that's when I knew

was going to be OK. " I looked at 's dad who never turned to me

as he drove the car -and asked " Why? " He then looked at me and

said " Because he realized he couldn't do it -and he cared -he cared

so I knew he would be OK. "

I met about a year after the accident at a club with my

friends -around the time he was " at best " going to be trying to put

square pegs into square holes. to this day is one of the best

dancers you would ever meet -and was a walking personality/charm/

intelligence people magnet. He went through plastic surgery and eye

surgery -but that was the minor stuff. , just like his dad

thought -was OK!

Since many of you may think this story is made up? His real name is

L. -or L. -and he is from Upper Montclair, NJ and I've

given enough details that you could check this story out -it's 100% a

real life miracle -and it's hopefully a story that will inspire you

Brock. and his parents know me very well -but just in case -

use my maiden name - Fernandez.

I have the last email you posted below -it appears there are some

good things you were seeing in the first three weeks. Again -I don't

know all the whys of whiney -but tears -and the present -isn't

always as bad

as they may appear -in fact they may be bright. I hope they are for

you too.

Merry Christmas!

=====

[Guest guest]

That's all Tanner said - " mmmmm " -and with his blank but

adorable little cherub face - you've read his story either here or

in The Late Talker book right? Tanner today -yes there are days he

is told to " Be Quiet Tanner! " (cute face or not!) And nobody today

would in their dreams call him MR...in fact some don't even know

there is anything " wrong " with him -till they try to have a long

conversation with him...then it's there. But it doesn't stop him

from being a normal little boy.

Again don't let anyone label your child with something that is not

appropriate 'just' to secure services. It's one of those " come back

to bite you later " things. Please do go for the second opinion -and

don't worry about questioning any MD about their fees. They may be

able to work something out for you.

Keep that hope for your baby . And keep this email and let us

all know the great news about where he is next year.

=====

[Guest guest]

OH I agree I diagnosing wrong is bad. I was just saying results of evaluations.

I would never allow a diagnosis I didn't agree with but a poor eval is

different. Especially since it can be shown to be wrong over time. Each eval

usually knocks out the one before it but diagnosis's don't work that way they

stay around.

Nichole

Mom to Dade 11/29/01 and Leia 2/7/04

----- Original Message -----

From: kiddietalk

[Guest guest]

Certainly you want to be realistic with what is going on with your child.

But it seems that so many of the children with apraxia get an evaluation

that incorrectly includes " cognitive delay " . ph was evaluated as

moderate cognitive delay as well, with his greatest weakness being in

receptive language (9-12 months) during the first evaluation at 17 months. I

was devastated but wanted to be realistic. But the more I thought about

it - the more I thought they were wrong about his cognitive skills. Yet

there was definitely something " wrong " - I just couldn't put all the pieces

together until I learned about apraxia. A motor planning problem can affect

not only speech and coordination - but also the ability to get the shapes

into the right puzzle spot, string beads etc - all the little tasks they

look at in an evaluation. Now, no one would ever think he is MR - in fact

his 6-month eval put him ahead of his age in cognitive skills - confirming

our suspicion that he was in fact a very smart albeit uncoordinated little

guy. Once these kids get the appropriate therapy (and omegas - if they are a

responder), they take off. I remember thinking - well at least we qualify

for services. You may see a completely different picture 6 months from now

once appropriate therapy starts. -claudia

[ ] Re: AFTER THE DEV. PED. VISIT

Try not to be too upset and frustrated with the dx right now. So

much can change month to month with proper therapy and biomedical

intervention. Our first evaluation when our son was 2-3/4 didn't go

very well. Tired, sick, scared of all the strangers. He came out

pretty delayed. With therapy to help his oral and verbal apraxia as

well as language issues, and OT for hypotonia and motor coordination

difficulties, he is looking better and better. As his skills

improve, it seems clear that some of his delays are probably due to

auditory processing disorder and related receptive language

problems. His teachers are so optimistic that they were " shocked "

that the dev. ped. thinks he needs summer services. They claim he

won't even qualify for speech by kindergarten. (He's 3-1/2 right

now.) As his tone improves, his speech production improves, and so

does his ability to sit in a chair and do tablework with therapists.

I don't want to give false hope, but at such young ages it can be

very hard to tell where the problems are coming from. As one thing

improves, other problems that were previously hidden become

visible. The key is to do everything you can right now to give them

the best possible shot for recovery. The SLPs who work with her

will be able to give you a better idea of prognosis after they've

worked with her for awhile and can she how she progresses. If there

are other issues, OTs, PTs, etc. will also be a great resource. The

specialists aren't great at giving you the overall picture, but they

can be excellent at pinpointing the problems related to their field.

And check out a few other , too. 75% of the great

advice I have received came from moms on the listservs. They often

can point you in the right direction before the docs and

therapists. For each aspect of her dx, you'll find at least one

really good group out there.

Good luck!!!