I am confused

[Guest guest]

Sara-

I can understand how you must be frustrated and confused. My daughter

is 5, and is severe apraxic, though when she started out she did use

the ughn ugnh to express words, sometimes never even opening her

mouth, and with lots of therapy we are now at 200+ words, and have a

long way to go. I am just a parent, and not a doctor, so I can not

diagnose your child. She now attempts to use words, and most of the

time I am the only one to understand her, though being apraxic, she

does use words, and has evolved from the grunting. As most people on

this list can tell you that with apraxia, they do learn words, and

get out of the grunting, but do leave off consanants like you

described. The only thing I can tell you is that if you are not happy

with the results of the doctors, then get a second opinion. Her first

pediatrician, would just blow me off when I discussed her speech, in

fact never knowing that she even had a speech problem, but I have

since switched doctors, and found a wonderful, caring pediatrican,

that is familiar with apraxia, and has given me an official

diagnosis, and is searching for help where ever she can for my

daughter. I would recommend keeping a diary of what your son does,

and what verbal communication he does use, and taking that with you

to your son's ped, along with some information about apraxia/autsim,

and keep up the hard work, it sounds like you are doing an excellent

job of working with him, and giving him the best therapy you can at

the moment. Good Luck, and keep us posted!

Liz

http://kidstalkback.tripod.com/kidstalkback/

> I'm the mom of a 3.2 year old boy...I've been running the gauntlet

since

> last October through the local school's Early Intervention

programs, etc.

>

> I suspected apraxia when all this began. Cal's vocabulary at 2

consisted of

> gestures and " ungh ungh " when, around 12-18 months he had been

saying

> " mama, " " dog, " " car, " etc. I have spent hours on line and am

subscribed to

> every apraxia/PDD/autism list. I have read and studied and gleaned

so much

> information!

>

> The SLP at our school last winter assured us that apraxia is just

the

> current " trendy catch phrase " .....she and 3 others at the school

seemed to

> feel Cal should be classified with high-functioning autism. An

appointment

> was made with a Developmental Pediatrician (with a waiting time of 5

> months!) and we finally got to our appointment this past Monday.

I've been

> sitting with a gaping jaw ever since the " thorough " 45 minute

exam....

>

> My son is not apraxic...nor autistic. He has a speech

delay....period. Never

> mind that he toe walks, loves to spin in circles, lines things up

with

> meticulous care, curls up under chairs in the fetal position at

doctor's

> offices, has emotional meltdowns that cumulate in hitting others and

> himself, can't feed himself with a fork or spoon well, and heaven

help you

> if you ever have to wait in a line at a store, etc! The list goes

on and on

> and you've all heard it/lived with it before. <g>

>

> I quote the doctor: " Your son is interacting with the SLP. If a

child can

> participate in reciprocal play, then he's not autistic. " Okay, what

about

> apraxia? " Children with apraxia can only grunt 'ungh ungh'...your

child is

> trying to mimic words. "

>

> Of course he is! I have worked my rear end off the past 6 months.

We've

> learned ASL, practiced motor skills, set up social skill " trips, "

and it's

> all starting to pay off. His vocabulary has exploded in just the

past few

> weeks. Although he can only pronounce the first consonant and vowel

(and

> only if the word starts with an M, C or , augmented with sign,

he's

> becoming quite brave in his verbal attempts...he's just

started " sentences "

> with sign! And as all this communication success has given him

courage, he's

> approaching the world with less fear, too.

>

> Did I make a huge mistake here??? Did I read the signs wrong and

he's really

> just " eccentric, " as the doctor says? Did I get a bum doctor? Was

it stupid

> of me to help this child before his examination? I need more than

1:1 speech

> therapy for this child...there's a lot of other issues here, too.

>

> Advice...comments...HELP! <L> I am so frustrated right now. I can't

do this

> alone, but I don't seem to be getting any help from

the " professionals. "

> Should I just keep muddling through books and web sites...going

about all

> this on my own?

>

> Thanks for letting me vent...

> Sara from Gloucester, VA

[Guest guest]

Sara,

I am pretty new to this, as my son is currently only diagnosed as Poss.

Verbal Apraxia, but I can tell you that Ian had some similar traits. Ian

does not grunt, per say, but does have a sound I can only describe as a like

when you try to to breath " heee heee " w/ your tongue against your upper

teeth (like a chee chee sound...can't descibe it much better). His 7 word

vocab at 12 mos. disappeared to only ma ma at 18 mos.

You know your son. Have you thought about trying to get a second opinion? I

was told by a Dev. Ped that Apraxia, in any case, can't be diagnosed before

3. After researching and talking w/ other professionals, I learned that w/

the right amount of knowledge, a professional can pinpoint it before then

(not much, but some).

And as for the comment about reciprocal play, I work for and am the daughter

of an E.I. Developmental Therapist. OVer the years, she has worked with many

autistic children. In each case, the child would participate in play,

sometimes for the whole session.

I can't say for sure whether or not that Dr. was right or wrong, but these

are some of my experiences. And no it was not stupid to get therapies. THe

fact that they are working, I would say, proves that. Stay strong.

Sherry, mom to Ian (28 mos, poss Verbal Apraxia)

Message: 4

Date: Wed, 10 Jul 2002 21:06:08 -0400

From: " Sara " <loquacious@...>

Subject: I am confused

I'm the mom of a 3.2 year old boy...I've been running the gauntlet since

last October through the local school's Early Intervention programs, etc.

I suspected apraxia when all this began. Cal's vocabulary at 2 consisted of

gestures and " ungh ungh " when, around 12-18 months he had been saying

" mama, " " dog, " " car, " etc. I have spent hours on line and am subscribed to

every apraxia/PDD/autism list. I have read and studied and gleaned so much

information!

The SLP at our school last winter assured us that apraxia is just the

current " trendy catch phrase " .....she and 3 others at the school seemed to

feel Cal should be classified with high-functioning autism. An appointment

was made with a Developmental Pediatrician (with a waiting time of 5

months!) and we finally got to our appointment this past Monday. I've been

sitting with a gaping jaw ever since the " thorough " 45 minute exam....

My son is not apraxic...nor autistic. He has a speech delay....period. Never

mind that he toe walks, loves to spin in circles, lines things up with

meticulous care, curls up under chairs in the fetal position at doctor's

offices, has emotional meltdowns that cumulate in hitting others and

himself, can't feed himself with a fork or spoon well, and heaven help you

if you ever have to wait in a line at a store, etc! The list goes on and on

and you've all heard it/lived with it before. <g>

I quote the doctor: " Your son is interacting with the SLP. If a child can

participate in reciprocal play, then he's not autistic. " Okay, what about

apraxia? " Children with apraxia can only grunt 'ungh ungh'...your child is

trying to mimic words. "

Of course he is! I have worked my rear end off the past 6 months. We've

learned ASL, practiced motor skills, set up social skill " trips, " and it's

all starting to pay off. His vocabulary has exploded in just the past few

weeks. Although he can only pronounce the first consonant and vowel (and

only if the word starts with an M, C or , augmented with sign, he's

becoming quite brave in his verbal attempts...he's just started " sentences "

with sign! And as all this communication success has given him courage, he's

approaching the world with less fear, too.

Did I make a huge mistake here??? Did I read the signs wrong and he's really

just " eccentric, " as the doctor says? Did I get a bum doctor? Was it stupid

of me to help this child before his examination? I need more than 1:1 speech

therapy for this child...there's a lot of other issues here, too.

Advice...comments...HELP! <L> I am so frustrated right now. I can't do this

alone, but I don't seem to be getting any help from the " professionals. "

Should I just keep muddling through books and web sites...going about all

this on my own?

Thanks for letting me vent...

Sara from Gloucester, VA

[Guest guest]

Hi, Sara. If this is affecting your ability to get insurance coverage for

your son in terms of speech therapy / occupational therapy outside of

school, I think it is worth pursuing a second evaluation of your son by a

professional neurologist or dev pedi or both but after you find out who is

really knowledgeable about dsi, pdd, and apraxia in your area so you can

avoid your first experience. My son's dev. eval. wouldn't speak to apraxia

either, nor did his speech eval, both performed at Boston Children's. They

felt Wiley needed to be a combo of older, or speaking more, to reach that

conclusion. His second lang eval is on his 3rd birthday and I'm working to

schedule an appt with a pedi neurologist immediately thereafter.

I am reading this book by Stanley Greenspan right now which I'm sure you've

already read, but just in case, it is called something like The Special

Needs Child or Children with Special Needs and it is pretty interesting in

how it shows how deficits in different areas, whether motor, receptive,

expressive, cognitive, sensory, can result in autistic behaviors - it also

speaks to autism as well. It might be helpful to find a good developmental

psychologist as well to meet with -- I am finding this book somewhat

interesting and helpful though in terms of how I play with my son.

Don't second guess yourself. No one can truly predict a child's outcome, or

totally nail the problem down permanently, etc., but you should trust in

your own observations - you know whether his behaviors are helping or

hurting him socially and are not being the slightest bit unreasonable to

push for a greater understanding of him by those people who are in place to

help him. Sound like you're definitely hitting some walls and I'm really

sorry for that.

Good luck in seeing your son through this - he's lucky to have you!

Betsy

>From: " Sara " <loquacious@...>

>Reply-

>< >

>Subject: [ ] I am confused

>Date: Wed, 10 Jul 2002 21:06:08 -0400

>

>I'm the mom of a 3.2 year old boy...I've been running the gauntlet since

>last October through the local school's Early Intervention programs, etc.

>

>I suspected apraxia when all this began. Cal's vocabulary at 2 consisted of

>gestures and " ungh ungh " when, around 12-18 months he had been saying

> " mama, " " dog, " " car, " etc. I have spent hours on line and am subscribed to

>every apraxia/PDD/autism list. I have read and studied and gleaned so much

>information!

>

>The SLP at our school last winter assured us that apraxia is just the

>current " trendy catch phrase " .....she and 3 others at the school seemed to

>feel Cal should be classified with high-functioning autism. An appointment

>was made with a Developmental Pediatrician (with a waiting time of 5

>months!) and we finally got to our appointment this past Monday. I've been

>sitting with a gaping jaw ever since the " thorough " 45 minute exam....

>

>My son is not apraxic...nor autistic. He has a speech delay....period.

>Never

>mind that he toe walks, loves to spin in circles, lines things up with

>meticulous care, curls up under chairs in the fetal position at doctor's

>offices, has emotional meltdowns that cumulate in hitting others and

>himself, can't feed himself with a fork or spoon well, and heaven help you

>if you ever have to wait in a line at a store, etc! The list goes on and on

>and you've all heard it/lived with it before. <g>

>

>I quote the doctor: " Your son is interacting with the SLP. If a child can

>participate in reciprocal play, then he's not autistic. " Okay, what about

>apraxia? " Children with apraxia can only grunt 'ungh ungh'...your child is

>trying to mimic words. "

>

>Of course he is! I have worked my rear end off the past 6 months. We've

>learned ASL, practiced motor skills, set up social skill " trips, " and it's

>all starting to pay off. His vocabulary has exploded in just the past few

>weeks. Although he can only pronounce the first consonant and vowel (and

>only if the word starts with an M, C or , augmented with sign, he's

>becoming quite brave in his verbal attempts...he's just started " sentences "

>with sign! And as all this communication success has given him courage,

>he's

>approaching the world with less fear, too.

>

>Did I make a huge mistake here??? Did I read the signs wrong and he's

>really

>just " eccentric, " as the doctor says? Did I get a bum doctor? Was it stupid

>of me to help this child before his examination? I need more than 1:1

>speech

>therapy for this child...there's a lot of other issues here, too.

>

>Advice...comments...HELP! <L> I am so frustrated right now. I can't do this

>alone, but I don't seem to be getting any help from the " professionals. "

>Should I just keep muddling through books and web sites...going about all

>this on my own?

>

>Thanks for letting me vent...

>Sara from Gloucester, VA

>

>

>

>

>

>

>

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

Hi ,

If it helps at all Charlie is autistic but can and does play

appropriately - loves other kids , takes turns etc !

Regards

Deborah

Sherry " <sltaylor@a...> wrote:

OVer the years, she has worked

with many

> autistic children. In each case, the child would participate in

play,

> sometimes for the whole session.

> I can't say for sure whether or not that Dr. was right or wrong,

but these

> are some of my experiences. And no it was not stupid to get

therapies. THe

> fact that they are working, I would say, proves that. Stay strong.

>

> Sherry, mom to Ian (28 mos, poss Verbal Apraxia)

[Guest guest]

Sara,

I understand totally what you are going through. My daughter is 5 and is

severely apraxic. Through the years she has had 3 different ST's and they

all said the same thing--she has apraxia, actually dyspraxia. I took her to

a pediatric neurologist and he labeled her as Developmental Delay. I

actually told him that I felt that she has apraxia and he never said one

word. I began thinking that she is getting to be school age and I want a

more appropriate diagnosis. I chose a new pediatrician, recommended by my

family doctor and he referred me to a neurological pediatric diagnostician

(I think that is what his title is.) We have our second appointment with

him tomorrow. I told him about her having apraxia and he said that

apparently the original pediatric neurologist thought so too. He never told

me that. I am going to stick with the newer doctor though, because he is

much younger and his personality is better aimed towards children. He gave

my daughter a bag of popcorn on our first visit. He is now known as the

popcorn doctor. Now my family doctor is saying that he doesn't think that

she has the apraxia. My daughter is now up to 125 words and just the other

day said 5 new ones within minutes!!! I would definitely get another

doctor's opinion. I wouldn't be satisfied until you got the answer that you

were looking for or at least you feel that the doctor preformed sufficient

testing to rule it out.

I hope this helps

Sheila

>From: " Sara " <loquacious@...>

>Reply-

>< >

>Subject: [ ] I am confused

>Date: Wed, 10 Jul 2002 21:06:08 -0400

>

>I'm the mom of a 3.2 year old boy...I've been running the gauntlet since

>last October through the local school's Early Intervention programs, etc.

>

>I suspected apraxia when all this began. Cal's vocabulary at 2 consisted of

>gestures and " ungh ungh " when, around 12-18 months he had been saying

> " mama, " " dog, " " car, " etc. I have spent hours on line and am subscribed to

>every apraxia/PDD/autism list. I have read and studied and gleaned so much

>information!

>

>The SLP at our school last winter assured us that apraxia is just the

>current " trendy catch phrase " .....she and 3 others at the school seemed to

>feel Cal should be classified with high-functioning autism. An appointment

>was made with a Developmental Pediatrician (with a waiting time of 5

>months!) and we finally got to our appointment this past Monday. I've been

>sitting with a gaping jaw ever since the " thorough " 45 minute exam....

>

>My son is not apraxic...nor autistic. He has a speech delay....period.

>Never

>mind that he toe walks, loves to spin in circles, lines things up with

>meticulous care, curls up under chairs in the fetal position at doctor's

>offices, has emotional meltdowns that cumulate in hitting others and

>himself, can't feed himself with a fork or spoon well, and heaven help you

>if you ever have to wait in a line at a store, etc! The list goes on and on

>and you've all heard it/lived with it before. <g>

>

>I quote the doctor: " Your son is interacting with the SLP. If a child can

>participate in reciprocal play, then he's not autistic. " Okay, what about

>apraxia? " Children with apraxia can only grunt 'ungh ungh'...your child is

>trying to mimic words. "

>

>Of course he is! I have worked my rear end off the past 6 months. We've

>learned ASL, practiced motor skills, set up social skill " trips, " and it's

>all starting to pay off. His vocabulary has exploded in just the past few

>weeks. Although he can only pronounce the first consonant and vowel (and

>only if the word starts with an M, C or , augmented with sign, he's

>becoming quite brave in his verbal attempts...he's just started " sentences "

>with sign! And as all this communication success has given him courage,

>he's

>approaching the world with less fear, too.

>

>Did I make a huge mistake here??? Did I read the signs wrong and he's

>really

>just " eccentric, " as the doctor says? Did I get a bum doctor? Was it stupid

>of me to help this child before his examination? I need more than 1:1

>speech

>therapy for this child...there's a lot of other issues here, too.

>

>Advice...comments...HELP! <L> I am so frustrated right now. I can't do this

>alone, but I don't seem to be getting any help from the " professionals. "

>Should I just keep muddling through books and web sites...going about all

>this on my own?

>

>Thanks for letting me vent...

>Sara from Gloucester, VA

>

>

>

>

>

>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

Sara -why not ask that SLP if apraxia is the new " trendy catch

phrase " -then what was the old one - cognitively impaired? TMR?

(trainable mentally retarded)

Maybe not at two or three when words like " receptive delay " may be

used -but what do you think happens to these same children if they

are apraxic at seven, eight and ten that don't get the therapy they

need, still can't talk, read or write well, that also have developed

low self esteems and withdraw or lash out from the years of teasing

and failing in not being understood on very simple things. What

about those children that fell through the cracks? I just had

laryngitis for a few days -with one day of no voice. No ability to

even say " hi " unless I wanted to whisper it because nothing came

out. I was able to whisper at least -or write...and I went nuts.

Imagine years locked away in a jail worse than that.

I've heard way too often about many of them from parents who found us

when their child was older. Children who showed little to no

progress with therapy alone for years and years, some who after a few

weeks of appropriate therapy together with a few drops of fish oil

started to talk and be seen in a different light. Ask Mauri Blefeld

who runs the Children's Apraxia Network of PA for example (or I'll

call her and ask her for you) Up till this past summer, her and her

husband tried almost everything under the sun for their close to 10

year old son who was essentially nonverbal, using an augmentative

device to communicate, and schooled with high functioning autism

students. She only recently told me (and PBS) that her son wasn't

schooled in the " regular " school because the school professionals

never thought her son was cognitively able to be placed in the public

school, and she would be in tears every time she talked to them

knowing the child they were talking about what not her son. Last

summer Mauri tried ProEFA for the first time and within weeks her son

started to attempt speech and within a few months went to two word

sentences for the first time. He no longer wanted to use his

augmentative device. Mauri told me that when the same school

professionals saw Mauri's son for the first time this time after

ProEFA, they couldn't believe it was the same child. He was

attempting to speak without the augmentative device -and the school

for the first time saw him in a different light -and wants to bring

him back in district and work out a program for him. For the first

time they see the boy that Mauri and her husband knew was always

there. You all will be able to see Mauri's story when PBS airs it's

documentary this Fall. Some who " bloom " after finding a therapist

that believes in and works with the child. Look at Khalid who is now

15 with global apraxia -who just posted to this list in praise of

. Khalid and his family also struggled for years and years of

rude comments about Khalid from family friends to one of his teachers

and one of his coaches as well. Khalid -who was given a chance

showed them all in that now in spite of his apraxia -he's learned to

overcome it and excel in school, sports, and socially. So (insert

raspberry noise here) to all of them that laughed at him when!

About professionals -not all are knowledgeable, and some may

misdiagnose or misclassify. A knowledgeable medical, speech, and

educational professional is what our children all need, they all need

a hero -so as parents we need to keep looking till we find someone

that is -and that helps.

As Steve says

" I've got a child that my wife and I fight for on a daily/hourly

basis against demons known and unknown - I don't have the time to

dwell on being offended or having hurt feelings - I've got too much

to do for him and every second in the fight is too critical. " (Steve

if you want us to offend you then don't write something beautiful!)

It's best to interview over the phone -or better yet -find

professionals through word of mouth. Join a local support group -or

start one. If you know someone great rave about them and share just

like I did in my last email.

Just because some professionals don't see your child the way you do -

doesn't mean they are right, or that you are. Never give up the

fight and hope though and time will tell. Statistically I believe in

many cases it is the parents of the children who 'see' their child

and force the rest of the world to see them like they really are that

are correct, just like Mauri's son and Khalid showed us, and when you

look at past mistakes in history -thank God for those that believe in

the children, especially the special ones!

http://www.will-grundycil.org/articles.htm

http://www.rehab.uiuc.edu/archive/ss/9697/disability_rights.html

=====

[Guest guest]

Sara,

An SLP is the professional who is qualified to diagnose apraxia of speech. I

would ask around for an SLP that is very knowledgeable in apraxia. There aren't

many who are knowledgeable enough to give a diagnosis. If you put down your

town and state, maybe someone on this list can give you a recommendation.

Apraxia is very often mistaken for autism. We went down this road with my son

too. He was verbal, then he stopped talking for over a year and then started

again. This pattern is a red flag for autism but as it turns out, my son was

just apraxic and very cognizant of the fact that talking was hard. I guess you

could say he was being selectively mute instead of trying to talk which he knew

he would fail at. So don't close the book on this one yet.

You could also seek out a neurologist who is very familiar with apraxia. Even

though an SLP is the one who is qualified to diagnose (according to ASHA), you

will need a neurologist to write the diagnosis on paper for insurance and other

" official " things.

I know it can get frustrating bouncing between professionals (and diagnoses).

Hang in there

Tricia

Illinois

>

>Did I make a huge mistake here??? Did I read the signs wrong and he's

>really

>just " eccentric, " as the doctor says? Did I get a bum doctor? Was it stupid

>of me to help this child before his examination? I need more than 1:1

>speech

>therapy for this child...there's a lot of other issues here, too.

>

>Advice...comments...HELP! <L> I am so frustrated right now. I can't do this

>alone, but I don't seem to be getting any help from the " professionals. "

>Should I just keep muddling through books and web sites...going about all

>this on my own?

>

>Thanks for letting me vent...

>Sara from Gloucester, VA

[Guest guest]

I cannot thank you all enough for your words of advice and encouragement....

I'll plunge back into the fray and keep fighting. Cal is well worth the

effort!

If anyone can suggest who to contact (or NOT to) in Virginia (Norfolk to

Richmond...I'm right in the middle), it would be greatly appreciated. My

husband bailed completely on us after I became pregnant and money is too

tight to play games with incompent doctors. And I hate to see the time

slipping away like this! It's criminal to do this to a child.

Thank you again....you were all a great deal of help (and comfort!)

Sara (mom to Cal who's ASL vocabulary is now 57 words and growing! Good job,

kiddo!)

Gloucester, VA

[Guest guest]

Hi Sara!

I hope someone in our group can recommend a local professional

personally for you. In the meantime -I have this advice (similar to

what I sent out the other day)which may help you find someone.

The list of people you can contact in Virginia for advice,

complaints, or support on the State level is here:

http://www.nichcy.org/stateshe/va.htm

(If you are not in Virginia and want to find a quick list of support

like this for your state -just change the last two letters right

before the .htm " VA " abbreviated for Virginia, to whatever the two

letter abbreviation is for your state in this address:

http://www.nichcy.org/stateshe/va.htm So for example New Jersey the

address would be http://www.nichcy.org/stateshe/nj.htm

Or -you could put the words " nichcy " and " your state " - whatever your

state is- into the search engine at http://www.google.com and it will

come right up.)

(NICHCY)

P.O. Box 1492

Washington, DC 20013

(800) 695-0285 (Voice/TTY); (202) 884-8200 (V/TTY)

E-mail: nichcy@...

Web: www.nichcy.org

NICHCY is the national information and referral center that provides

information on disabilities and disability-related issues for

children and youth. Information Searches of Databases and Library.

Again, I hope that helps for now -we are here for you!

=====

[Guest guest]

What are our actual " rights " regarding employment? I am really

confused about how long I should try to do my physically demanding

job, whether or not my employer " has " to make any adjustments for me,

and when it is appropriate to try to file for disability. What is my

best resourse for the answers?

-

[Guest guest]

,

This is very individual. Employers make 'reasonable modifications',

but if your job is too physically demanding, I would suggest talking

with your doctor about limitations, possibly working in a 'desk job'

for awhile, or cutting your hours to part-time, but if your CMT is so

severe that you are unable to work any longer, and your doctors back

you on this, then open your initial application for disability.

~ Gretchen

[Guest guest]

if you have no thyroid gland then I really think you should start on 180mg and

increase weekly. if you do labs then be sure to get FT3 and FT4--do not treat

to TSH.

Gracia

I take Armour after my entire thyroid removed. There is alot of

conflicting advice re:

1. When adjusting dose, some info says its ok to increase weekly,

other info says increase only every 4-6 weeks? Which is right?

2. How long after dose change is best to have labs done?

3. What labs should be done?

JJ

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