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It's not that the therapy at home is always better than the therapy

at the clinic -it depends on the therapist. Sounds like the one you

had at the clinic lucked out in odds to keep her job since 75% of

late talkers are just that -children that speak a bit late with or

without therapy. The fact that she promised you that " by 2 he'll be

up to 200 words " was probably just one of many clues. 75% of the

time she was correct!

But why am I also falling into the trap of assuming there is a

diagnosis? Your child is only 22 months old and it's still possible

he's part of the 75% group! It's possible the therapist leaning

towards an apraxia diagnosis is wrong. If you listen to some of the

apraxia " experts " out there they'll tell you apraxia can't even be

diagnosed until 3 years old. Of course in this group we know that's

not true but the point is there are specific things to look for. If

your child is delayed in speech then speech therapy (with a good

therapist) will help -can't hurt...but if it's apraxia you want to

know so your child can get the appropriate more intensive therapies

early.

Have you read The Late Talker book? It may help you either way.

An apraxia diagnosis not as dismal as you may believe. The

overwhelming majority over the years here have children that are

diagnosed with apraxia at some point from two years old to even as

late as nine years old and learn to be verbal communicators

mainstreamed in school and life. Then there's the whole other large

and growing group of apraxic children who are misdiagnosed as

autistic who don't end up with the right therapy for months or years

and remain nonverbal until they end up getting the right diagnosis

and overcome. If apraxia is suspected you probably want to go for a

second opinion with another SLP -and you probably want to also take

your child to a knowledgeable neurodevelopmental pediatrician or

pediatric neurologist which I have more on below. Don't let that

overwhelm you -the next therapist or the neuroMD may say they don't

see any signs of anything other than a simple delay in speech. Even

without a diagnosis of course if your child is delayed a certain

percentage he should be qualified for Early Intervention through your

state. Or are you outside the US?

You don't mention any signs other than the not talking yet so after

reading through some of the following let us know if there are any

other signs. It's OK to cry -we all do when we first hear a " leaning

towards " diagnosis (or months later when it really hits us) but the

good news is that the chances are that like most of us you'll find

yourself shocked to be telling your child to " stop talking so much

and get ready " because you are in a rush to get them to school or

whatever!

To listen to various children with apraxia at various ages you can go

to Bilker's talking page which was inspired by his son

who is now a teenager. My son Tanner who just turned 12 is also on

this page as well as Khalid who is twenty something now! It seems we

now have more parents of teens with apraxia in this group than ever

before as this group has been around for close to 9 years now!

http://www.debtsmart.net/talk/index.html

Below is a very long archive on just about all you need to know to

get your child from 0 to 60 mph in speech. (including info about

fish oils!)

Re: Hi! New and wondering about apraxia.

Hi Mrs Laurie and welcome!

Your son sounds like he has some oral apraxia which would of course

need to be confirmed by professionals. If oral apraxia is present

together with your child's delay he should at least be diagnosed

as " suspected apraxia " and appropriate therapy should be provided.

He is entitled by federal law to a free and appropriate public

education (FAPE) in the least restrictive environment (LRE) which

means that if 5 days of one on one speech therapy is appropriate for

him then that's what he should receive. What type of speech therapy

is he receiving from the school right now when you say " some " ?

Below is a very long archive to help -please know that you don't have

to understand it all at once -we're here as a group to help!

Thanks for sharing. This group has from the start been a group

that's made up of parents and professionals who care for children

with many types of speech and/or language delays and/or disorders.

There are parents here for example with undiagnosed " late talkers "

and we just have not heard from them in awhile. It's actually a

really good thing when there is a mix of us to share because we all

learn from each other as many diagnoses can overlap -or down the road

we learn that our child does have co diagnosis.

While this group is open to parents of all children with

communication impairments -including hearing impaired, autistic etc.

it wasn't that all that posted recently had a child with autism, or

autism and apraxia -but because of society focus on autism -many here

started following an autism approach -including ABA in some cases!

That's understandable if the much more basic approach to apraxia -ST

and OT and EFAs were tried first and didn't work -but some were

trying that to start.

The overwhelming majority (if you check the archives) have success

with the basic approach to apraxia.

On the other hand- most of us are dealing with more than verbal

apraxia.we just don't know that when our child is 2 -and we learn

through professionals and observations as they continue to grow and

more and more is expected of them. This is also why it's important

to take your child for a neurodevelopmental medical exam when your

child is suspected of apraxia to confirm or rule out other diagnosis

such as sensory integration dysfunction etc. The earlier you know -

the sooner to start appropriate therapies to get them up to speed by

kindergarten.

Don't let it overwhelm you -perhaps we aren't meant to know more

than what we have to know at each stage. We'll be here to help along

the way. It's OK to have any type of emotion when we find out our

child has more than a simple delay -or " more " than " just " verbal

apraxia. And it's OK to be completely overwhelmed and saddened to

find out your child has apraxia. And as I was one of those parents

it's never " just " apraxia when you find out!!!

It's OK to be upset " just " because your child is a " late talker " too!

Please know that I too believed Tanner to just have apraxia and have

my first message posted to a grouplist about that below.but down the

road found out he had a few other things we needed to help him

address. The incredible news is that the majority of our children if

you check history are up to speed to be mainstreamed by kindergarten-

and of course many have learned with communication impaired children

that it's best to start kindergarten at 6 vs. 5 to give them that one

extra year of therapy and developmental time.

If you have questions after reading the following please share them.

This group has always been a wealth of information for all of us, no

matter how long we've been here.

Below is a new member archived message to hopefully answer more of

your questions for now (did you read The Late Talker yet?) For updated

information on fish oils and vitamin E and more - please visit the

links section here

/links

What type of apraxic like speech behaviors are you seeing that makes

you and the SLP suspect your child has apraxia vs. a simple delay in

speech? Is your child talking at all yet? At your child's age -

without speech, it's difficult to diagnose verbal apraxia -they

could " suspect " verbal apraxia and begin treatment just in case,

which wouldn't hurt your child if he ended up just having a simple

delay. Just a few questions before we could provide more accurate

answers:

Does your child have signs of oral apraxia? (for example, can he on

command smile, imitate funny faces, blow bubbles...if you put peanut

butter anywhere around his mouth can he lick it off no matter where

it is?)

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

Does your child have any neurological " soft signs " such as hypotonia

or sensory integration dysfunction?

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

Who else evaluated your child? Was it only the SLP through your

town school or was he also in Early Intervention through the state?

(birth to three) Was he evaluated by both a speech pathologist as

well as an occupational therapist? Was/were they knowledgeable

about apraxia? (If your child wasn't diagnosed by an occupational

therapist as well and professionals suspect apraxia -I highly

recommend you request that too either through both the school as

well as private through insurance for many reasons)

To answer any questions you may have about taking your child to see a

neurodevelopmental MD if he has not yet been to one and apraxia is

suspected... in one word - " Yes!!! " I would have your child diagnosed

(private) by a neurodevelopmental medical doctor (developmental

pediatrician or pediatric neurologist) who is knowledgeable about

apraxia and other neurologically based multi-faceted communication

impairments for numerous reasons. Reasons include (but not limited

to)

*having a " hero " on the outside of the school who can assist in a

therapeutic plan and oversee your child's development over the years

*advocacy support with the insurance company

* ruling out or confirming any neurological soft signs or any other

reasons for the delay in speech

*help those that ask " why isn't he talking yet " understand this is a

medical condition -and has nothing to do with your child's cognitive

ability. (if in your child's case it doesn't. Apraxia in itself

does not affect a child's cognitive ability -and speaking early or

late is no indication of a child's intelligence. Also contrary to

popular belief -most who have speech impairments have average to

above average intelligence)

Here's an article written by Neurodevelopmental Pediatrician Dr.

Marilyn Agin that was featured as a cover article in Contemporary

Pediatrics -a trade magazine for hundreds of thousands of pediatric

medical professionals across the US. (I wrote the parent guide)

" The " late talker " -when silence isn't golden

Not all children with delayed speech are " little Einsteins " or garden

variety " late bloomers. " Some have a speech-language disorder that

will persist unless warning signs are recognized and intervention

comes early. Includes a Guide for Parents. "

Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

http://contemporarypediatrics.modernmedicine.com/radio_peds4

Actual article (where you can read it for free)

http://drgreene.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

or

http://opsc.mediwire.com/main/Default.aspx?P=Content & ArticleID=132720

My parent guide still works (for free)

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/contpeds/492\

004/136315/article.pdf

I would also have at least one private " out of pocket " (if possible)

exam with a knowledgeable speech pathologist as well. This SLP can

coordinate with your child's MD, and school therapist and other

professionals, and again be there to assist in a therapeutic plan,

help set goals and oversee your child's development over the years

if needed.

Networking with parents of other speech-impaired children is also

possibly one of the best moves you could make in your child's

recovery. Others will steer you to the " right " professionals and

programs in your area -and you won't feel so alone. I would HIGHLY

recommend joining a whose goal is to unite parents and

professionals. This group

/ is through CHERAB

http://www.cherab.org

The speechville website also has message boards so that you can talk

to other parents on particular topics.

http://www.speech-express.com/boards/

Check your state resources at Speechville to find local support

groups and resources.

http://www.speech-express.com/regional-resources.html

http://www.speech-express.com/communication-station/regional-support-groups.html

(BTW -for anyone who is either running or starting a support group -

due to The Late Talker book and the many who will see your group,

please make sure your info is up at this website and accurate)

For all your other questions including what type of testing -just

read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

It!') At Amazon.com you can even start today and read sample pages

of the book online!

" The first book to show parents how to tell whether a child has a

speech delay -or a more serious speech disorder

Every parent eagerly awaits the day his or her child will speak for

the fist time. For millions of mothers and fathers, however,

anticipation

turns to anxiety when those initial, all-important words are a long

time

coming. Many worried parents are reassured that their child is " just

a late

talker, " but unfortunately, that is not always the case. Co-author

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-Sounds like your little one has made some good progress.... I love

to hear when they are putting word togeather it makes me so happy. I

definatly understand where you are coming from with frustration.

Devin which is my son has only say mommo ( mamma) doddo (dadda) and

Bubba. But he can sign please more cookie. That is a complete

sentance to me...So I am grateful of that. At first we did not know

anything about program out there so ofcourse insurance did not pay

for our therapy at a clinic then we were told by a friend about early

intervention and he did qualify because of his speech at that time

not even 2 months ago he said nothing... Like your daughter he does

not imitate us at all and we were sure he would esp. after the tubes

in his ears.... He has only 2 more sessions with early steps then it

stops due to the lack of therapist willing to service out county...

So we are basically out of luck but they say we can bring him to a

clinic free of charge but we have tried the clinic thing and it has

not worked for us... My son does not go many places because he gets

sick very easy... He was a preemie and even though he is fine now..

Off apnea monitor for 4 months YEAH!!!!!He seems to catch anything

and eveything... He also has some breathing issues still but nothing

major.......

I definatly appreciate your response I hope we can get some answers

soon.... Maybe I should look into the fish oil as well...

Thanks

Rapsodie

-- In , " thuyttphan "

<thuyttphan@...> wrote:

>

> Hi there,

>

> I don't know how much I can help, but I just wanted to let you know

> that you are not alone. I am about where you are with my

daughter.

> She is 28 months old now. At 24 months, she had 19 " words " . Early

> Intervention said she was just delayed and didn't qualify. Well,

now

> at 28 months, she has about 35 " words " and I had her reevaluated at

a

> private speech place and they are saying dyspraxia/apraxia (which

is

> scary). Her first speech therapy session will be tomorrow. I will

> get her reevaluated by Early Intervention later this

month...perhaps

> she'll qualify now for the free at home stuff. I will be taking

her

> to a developmental pediatrician and a neurologist sometime this

> month. We had her hearing checked which came out fine.

>

> As for a description of Melia: she seems very normal, has no issues

> other than the speech. She can move her teeth, tongue, lips, etc.

> just fine. She cannot imitate us. She has those 35 words and will

> use them appropriately and the rest of the time just grunt (enh,

enh,

> enh) and use lots gestures and signs (ASL or ones that she's made

up

> herself). She has no sensory issues or hypotonia. She plays well

by

> herself and with others. She sleeps well and eats well. She is

> potty trained as of 2 weeks ago. She has put 2 words together ,

but

> they are pretty much limited to " no, mama " , " up, mama " , " please,

> mama " . But she does put one word with gestures alot to convey more

> info which is encouraging. She understands everything we say to

her

> and some things that we don't say to her(when she's obviously

> eavesdropping). She will follow 2-3 step directions without any

> other cues. I've started giving her fish oil. My friend who is

> really up on supplements, health food...stuff like that says you

> can't go wrong and overdose with fish oil since it really is just

> food---oil from fish.

>

> I'm still hoping that she is only delayed, but the developmental

> pediatrician and neurologist will give me a more definitive answer

> (hopefully). My regular pediatrician thinks she is okay and

probably

> just delayed, but supposedly they are not really trained for this

> kind of stuff. My gut tells me she is only delayed and may perhaps

> start talking after 3 years old, but better to be safe than sorry,

> right? I am not sure either what to expect from the dev ped or the

> neurologist. I'm thinking that the dev ped will look and play with

> Melia and ask me lots of questions and then give me her/his

> professional opinion. With the neurologist, I'm thinking that

he/she

> will do some lab tests (CAT scans, MRI, bloodwork). For this type

of

> stuff, she'll be asleep, of course. Scary stuff to have to do on a

> toddler.

>

> Question for you: why are you having to stop the free at home

speech

> therapy? When you mentioned Early step, is this the same as Early

> Intervention??? If not, you should look into the Early

Intervention

> in your area. There should be one since they are a govenrment

agency

> that also works with the local public school system. They work

with

> kids from birth to 3 years old. If he qualifies (25 % delayed),

> it'll be the free at home speech therapy.

>

> I hope I have given you some useful info. I've cried and am still

> crying these days, too. I've stayed up late reading everyones'

posts

> and analyzing my child's symptoms and constantly wondering if Melia

> does or does not have apraxia. I want a real answer whether it be

> yae or nae and I think the dev ped and neurologist can give me

that.

> I think you should also get a real answer from someone qualified

and

> not someone just saying we're " leaning towards apraxia. " Because

> what the @#% & does that really mean anyway and what does a parent

do

> with that info?...except get thoroughly confused.

>

> Take care,

> Thuy

>

>

> >

> > Hello. I have been reading all the great info. people have been

> > posting and have finally decided to write. My son who is almost

22

> > months old and the most precious little boy.He is not really

> talking.

> > He had alot of ear infections and we thought that when he had

tubes

> > put in his ears that he would immediatly start since his hearing

> test

> > he passed with flying colors. Well he had tubes put in and he

still

> > did not start to talk. We started to get real concerned .... So

our

> > ped. recommended we go to a speech therapist so we did so and she

> > reassured us nothing was wrong with him. Keep in mind this is a

> > little boy who could hear everything we said follow instructions

> and

> > seemed to get all we were saying. She started to say things to us

> > like boy he sure has a temper and if we could get him to listen

to

> > me. Right away I felt uneasy.... Then she started to say things

> like

> > by the time he is 2 he will be saying atleast 200 words... I

> > eventually pulled him out when I found Early steps program. They

> have

> > done wonders with him. He says 3 words now and signs about 40

> signs.

> > He does not have a bad temper he was just very frustrated he

wanted

> > to tell us things and could not tell us. Now they are saying that

> > they believe that he is leaning towards apraxia..... I have read

> > about it and everything I have read says about other delays this

> and

> > that... I am so confused....... This therapy (at home) has done

> > wonders for hime. Where as the therapy in a clinic was doing

> nothing

> > for him....... They are actually having to stop the therapy at

> home.

> > So now I have to find a therapist ( at my expense once again) to

> come

> > to the house..... But I am trying to find out some info about

> apraxia

> > from people who have had experiance with it not just from

articles

> > and research.... How do they test a baby for it.....? What type

of

> > test do they do? The therapist we have now are trying to set up a

> > referrel to go see someone and I want to kinda know what to

> expect..

> > He gets upset easily and I want to know what to expect so i can

be

> as

> > prepared as possible.... Sorry if I am kinda all over the

place....

> I

> > am so so confused and upset... I have cried and cried so much

over

> > this.... It seems that everything is just so overwhelming when it

> > hits you all at one time...

> >

>

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--Jill,

What test did the have to run to diagnose him with apraxia?

Devin has been through alot in his little life so far... And since he

has a hard time communicating a trip to the doctors office or any

type of testing can make for a horrible time..... It is bad with

children that can speak but when a child can not speak it seems

tremendously horrible. I have noticed atleast with my son he looks at

me like hey you mom dont you understand what I am trying to tell

you....

I am curious is a neuro. thing? I am just so beside myself here..

Thanks

Rapsodie

- In , JADulske@... wrote:

>

> My son is almost 8 and was diagnosed with verbal apraxia around the

age of

> 2. He still doesn't speak and he gets really upset when he cant

tell us what he

> wants. He can understand and hear everything we say but just cant

say it

> back and he gets really frustrated. He just started saying mom a

few weeks ago.

> He has a dynavox machine that he uses so he can tell us what he

wants. He

> gets frustrated with that sometimes though because he cant find

what he wants.

> If you have any more questions just let me know and I will try to

help.

> JIll

>

>

> In a message dated 7/1/2008 12:44:31 P.M. Central Daylight Time,

> Rapsodie27@... writes:

>

>

>

>

> Hello. I have been reading all the great info. people have been

> posting and have finally decided to write. My son who is almost 22

> months old and the most precious little boy.He is not really

talking.

> He had alot of ear infections and we thought that when he had

tubes

> put in his ears that he would immediatly start since his hearing

test

> he passed with flying colors. Well he had tubes put in and he

still

> did not start to talk. We started to get real concerned .... So

our

> ped. recommended we go to a speech therapist so we did so and she

> reassured us nothing was wrong with him. Keep in mind this is a

> little boy who could hear everything we said follow instructions

and

> seemed to get all we were saying. She started to say things to us

> like boy he sure has a temper and if we could get him to listen to

> me. Right away I felt uneasy.... Then she started to say things

like

> by the time he is 2 he will be saying atleast 200 words... I

> eventually pulled him out when I found Early steps program. They

have

> done wonders with him. He says 3 words now and signs about 40

signs.

> He does not have a bad temper he was just very frustrated he wanted

> to tell us things and could not tell us. Now they are saying that

> they believe that he is leaning towards apraxia..... I have read

> about it and everything I have read says about other delays this

and

> that... I am so confused....that... I am so confused....<WBR

> wonders for hime. Where as the therapy in a clinic was doing

nothing

> for him....... They are actually having to stop the therapy at

home.

> So now I have to find a therapist ( at my expense once again) to

come

> to the house..... But I am trying to find out some info about

apraxia

> from people who have had experiance with it not just from articles

> and research.... How do they test a baby for it.....? What type of

> test do they do? The therapist we have now are trying to set up a

> referrel to go see someone and I want to kinda know what to

expect..

> He gets upset easily and I want to know what to expect so i can be

as

> prepared as possible.... Sorry if I am kinda all over the

place.... I

> am so so confused and upset... I have cried and cried so much over

> this.... It seems that everything is just so overwhelming when it

> hits you all at one time...

>

>

>

>

>

>

>

> **************Gas prices getting you down? Search AOL Autos for

> fuel-efficient used cars. (http://autos.aol.com/used?

ncid=aolaut00050000000007)

>

>

>

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Guest guest

--Thank you very much Jen. I know I sometimes sit here and think what

is wrong with me get off your tail and stop having a pitty party it

will be fine.... My son was born 10 weeks early and I told myself

then I would never ever say why is this happening but here I am

finding myself saying the same question..... I am trying to just

embrace it but it is so hard to just let it be. Kids can be mean and

adults even meaner.... When we are with my son and he is takin a so

called fit people say things like if she would spank him he would not

act like that... They dont understand he is not aking I fit he is

trying to tell me something and just has not learned the sign for it

yet.... I just want to knock there lights out.... I have 2 other

children a 10 year old boy and a 6 year old daughter who have

embraced this whole thing with no reservations they are learning how

to sign even on there own... They have been great .... I just feel

like there is more I should be doing.... Thank you so very much for

you words of encouragement and I might just take you up on that e-

mail offer...

Thanks

Rapsodie

In , jennyjudy@... wrote:

>

> It is so hard when you first learn of any diagnosis. It is one of

those

> things that with time you learn to accept and find peace with. I

remember at

> first I cried all the time too, and still sometimes do. My son will

be 5 in

> September, when his in home speech therapist works with him with

the kaufman cards

> he can say lots of words, but definitely not perfectly by any

means, he only

> has a few words that are spontaneous. A speech therapist is

qualified to

> make the diagnosis for apraxia, or if you feel more comfortable

going to a

> Pediatric Neurologist they too can make the diagnosis. It is so

hard when kids ask

> questions like why doesn't your son talk is he shy? I guess we have

to learn

> to celebrate the good days and the progress our children have made.

I still

> am very pained about the whole thing, myself. I know my son has so

much going

> on in his mind if he could just get it out, I pray and firmly

believe with

> all the help he is getting he will talk. It is hard when you are

going through

> this for the first time and don't know where to go for help. It

sounds like

> you are doing all you can to help your son, that is the most

important thing.

> Keep your chin up and smile, your little boy is a blessing. No

one has any

> guarantees about the future for their children, I guess it is just

one of

> those things we have to let unfold. E mail me off line if you ever

have any

> questions or just need a little moral support, I know it is hard.

Jen

>

>

> >

> > Hello. I have been reading all the great info. people have been

> > posting and have finally decided to write. My son who is almost

22

> > months old and the most precious little boy.He is not really

talking.

> > He had alot of ear infections and we thought that when he had

tubes

> > put in his ears that he would immediatly start since his hearing

test

> > he passed with flying colors. Well he had tubes put in and he

still

> > did not start to talk. We started to get real concerned .... So

our

> > ped. recommended we go to a speech therapist so we did so and she

> > reassured us nothing was wrong with him. Keep in mind this is a

> > little boy who could hear everything we said follow instructions

and

> > seemed to get all we were saying. She started to say things to us

> > like boy he sure has a temper and if we could get him to listen

to

> > me. Right away I felt uneasy.... Then she started to say things

like

> > by the time he is 2 he will be saying atleast 200 words... I

> > eventually pulled him out when I found Early steps program. They

have

> > done wonders with him. He says 3 words now and signs about 40

signs.

> > He does not have a bad temper he was just very frustrated he

wanted

> > to tell us things and could not tell us. Now they are saying that

> > they believe that he is leaning towards apraxia..... I have read

> > about it and everything I have read says about other delays this

and

> > that... I am so confused....... This therapy (at home) has done

> > wonders for hime. Where as the therapy in a clinic was doing

nothing

> > for him....... They are actually having to stop the therapy at

home.

> > So now I have to find a therapist ( at my expense once again) to

come

> > to the house..... But I am trying to find out some info about

apraxia

> > from people who have had experiance with it not just from

articles

> > and research.... How do they test a baby for it.....? What type

of

> > test do they do? The therapist we have now are trying to set up a

> > referrel to go see someone and I want to kinda know what to

expect..

> > He gets upset easily and I want to know what to expect so i can

be as

> > prepared as possible.... Sorry if I am kinda all over the

place.... I

> > am so so confused and upset... I have cried and cried so much

over

> > this.... It seems that everything is just so overwhelming when it

> > hits you all at one time...

> >

>

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Guest guest

---Hello.... He is not diagnosed yet.... The therspy at home seemed

to have been more intense and I was also involved in the therapy in

the clinic that we were going to and many of the clinics I have

checked into you are only allowed to go into the session 1 time with

them then they go back by thereself which I am sure does work but I

think it works for some and not for others my son for some reason

does not want to leave my side he does not do well with stranger and

for that fact children his own age.... I hope he is a late

talker...If not though I know he has to deal with that... The clinic

we were going to I must agree was not for him. He is also more

comfortable in his own surronding which I am sure many children are

and has seemed to do better with more intense therapy which he is

recieving from early steps intervention. I am in Florida and in our

county the program will stop in our county in 2 weeks due to the lack

of therapist willing to travel to our county to work with the

children... We are looking into have a therapist come into our home

which has come recommended by the early steps program ofcourse at our

expense...$100.00 for a 30 min session.

I will definatly get the late talker book... Thank you very much

Rapsodie

In , " kiddietalk "

<kiddietalk@...> wrote:

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Guest guest

Re: MRI, depending on why done you may have options. I would at least

ask what they are looking for. I asked the metabolic neuro and he

said " whatever I am looking for we would just know it was there but

could not do anything about it. " With that answer I decided no. Every

kid and dr is different though so it is best to ask.

> >

> > Hello. I have been reading all the great info. people have been

> > posting and have finally decided to write. My son who is almost

22

> > months old and the most precious little boy.He is not really

> talking.

> > He had alot of ear infections and we thought that when he had

tubes

> > put in his ears that he would immediatly start since his hearing

> test

> > he passed with flying colors. Well he had tubes put in and he

still

> > did not start to talk. We started to get real concerned .... So

our

> > ped. recommended we go to a speech therapist so we did so and she

> > reassured us nothing was wrong with him. Keep in mind this is a

> > little boy who could hear everything we said follow instructions

> and

> > seemed to get all we were saying. She started to say things to us

> > like boy he sure has a temper and if we could get him to listen

to

> > me. Right away I felt uneasy.... Then she started to say things

> like

> > by the time he is 2 he will be saying atleast 200 words... I

> > eventually pulled him out when I found Early steps program. They

> have

> > done wonders with him. He says 3 words now and signs about 40

> signs.

> > He does not have a bad temper he was just very frustrated he

wanted

> > to tell us things and could not tell us. Now they are saying that

> > they believe that he is leaning towards apraxia..... I have read

> > about it and everything I have read says about other delays this

> and

> > that... I am so confused....... This therapy (at home) has done

> > wonders for hime. Where as the therapy in a clinic was doing

> nothing

> > for him....... They are actually having to stop the therapy at

> home.

> > So now I have to find a therapist ( at my expense once again) to

> come

> > to the house..... But I am trying to find out some info about

> apraxia

> > from people who have had experiance with it not just from

articles

> > and research.... How do they test a baby for it.....? What type

of

> > test do they do? The therapist we have now are trying to set up a

> > referrel to go see someone and I want to kinda know what to

> expect..

> > He gets upset easily and I want to know what to expect so i can

be

> as

> > prepared as possible.... Sorry if I am kinda all over the

place....

> I

> > am so so confused and upset... I have cried and cried so much

over

> > this.... It seems that everything is just so overwhelming when it

> > hits you all at one time...

> >

>

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Guest guest

I thought 50 words by 2? That is what the doc said. Uggh!

>

> It's not that the therapy at home is always better than the therapy

> at the clinic -it depends on the therapist. Sounds like the one you

> had at the clinic lucked out in odds to keep her job since 75% of

> late talkers are just that -children that speak a bit late with or

> without therapy. The fact that she promised you that " by 2 he'll be

> up to 200 words " was probably just one of many clues. 75% of the

> time she was correct!

>

> But why am I also falling into the trap of assuming there is a

> diagnosis? Your child is only 22 months old and it's still possible

> he's part of the 75% group! It's possible the therapist leaning

> towards an apraxia diagnosis is wrong. If you listen to some of the

> apraxia " experts " out there they'll tell you apraxia can't even be

> diagnosed until 3 years old. Of course in this group we know that's

> not true but the point is there are specific things to look for. If

> your child is delayed in speech then speech therapy (with a good

> therapist) will help -can't hurt...but if it's apraxia you want to

> know so your child can get the appropriate more intensive therapies

> early.

>

> Have you read The Late Talker book? It may help you either way.

>

> An apraxia diagnosis not as dismal as you may believe. The

> overwhelming majority over the years here have children that are

> diagnosed with apraxia at some point from two years old to even as

> late as nine years old and learn to be verbal communicators

> mainstreamed in school and life. Then there's the whole other large

> and growing group of apraxic children who are misdiagnosed as

> autistic who don't end up with the right therapy for months or years

> and remain nonverbal until they end up getting the right diagnosis

> and overcome. If apraxia is suspected you probably want to go for a

> second opinion with another SLP -and you probably want to also take

> your child to a knowledgeable neurodevelopmental pediatrician or

> pediatric neurologist which I have more on below. Don't let that

> overwhelm you -the next therapist or the neuroMD may say they don't

> see any signs of anything other than a simple delay in speech. Even

> without a diagnosis of course if your child is delayed a certain

> percentage he should be qualified for Early Intervention through

your

> state. Or are you outside the US?

>

> You don't mention any signs other than the not talking yet so after

> reading through some of the following let us know if there are any

> other signs. It's OK to cry -we all do when we first hear

a " leaning

> towards " diagnosis (or months later when it really hits us) but the

> good news is that the chances are that like most of us you'll find

> yourself shocked to be telling your child to " stop talking so much

> and get ready " because you are in a rush to get them to school or

> whatever!

>

> To listen to various children with apraxia at various ages you can

go

> to Bilker's talking page which was inspired by his son

> who is now a teenager. My son Tanner who just turned 12 is also on

> this page as well as Khalid who is twenty something now! It seems

we

> now have more parents of teens with apraxia in this group than ever

> before as this group has been around for close to 9 years now!

> http://www.debtsmart.net/talk/index.html

>

>

> Below is a very long archive on just about all you need to know to

> get your child from 0 to 60 mph in speech. (including info about

> fish oils!)

>

>

> Re: Hi! New and wondering about apraxia.

>

>

> Hi Mrs Laurie and welcome!

>

> Your son sounds like he has some oral apraxia which would of course

> need to be confirmed by professionals. If oral apraxia is present

> together with your child's delay he should at least be diagnosed

> as " suspected apraxia " and appropriate therapy should be provided.

> He is entitled by federal law to a free and appropriate public

> education (FAPE) in the least restrictive environment (LRE) which

> means that if 5 days of one on one speech therapy is appropriate for

> him then that's what he should receive. What type of speech therapy

> is he receiving from the school right now when you say " some " ?

>

> Below is a very long archive to help -please know that you don't

have

> to understand it all at once -we're here as a group to help!

>

> Thanks for sharing. This group has from the start been a group

> that's made up of parents and professionals who care for children

> with many types of speech and/or language delays and/or disorders.

> There are parents here for example with undiagnosed " late talkers "

> and we just have not heard from them in awhile. It's actually a

> really good thing when there is a mix of us to share because we all

> learn from each other as many diagnoses can overlap -or down the

road

> we learn that our child does have co diagnosis.

>

> While this group is open to parents of all children with

> communication impairments -including hearing impaired, autistic etc.

> it wasn't that all that posted recently had a child with autism, or

> autism and apraxia -but because of society focus on autism -many

here

> started following an autism approach -including ABA in some cases!

> That's understandable if the much more basic approach to apraxia -ST

> and OT and EFAs were tried first and didn't work -but some were

> trying that to start.

>

> The overwhelming majority (if you check the archives) have success

> with the basic approach to apraxia.

>

> On the other hand- most of us are dealing with more than verbal

> apraxia.we just don't know that when our child is 2 -and we learn

> through professionals and observations as they continue to grow and

> more and more is expected of them. This is also why it's important

> to take your child for a neurodevelopmental medical exam when your

> child is suspected of apraxia to confirm or rule out other diagnosis

> such as sensory integration dysfunction etc. The earlier you know -

> the sooner to start appropriate therapies to get them up to speed by

> kindergarten.

>

> Don't let it overwhelm you -perhaps we aren't meant to know more

> than what we have to know at each stage. We'll be here to help along

> the way. It's OK to have any type of emotion when we find out our

> child has more than a simple delay -or " more " than " just " verbal

> apraxia. And it's OK to be completely overwhelmed and saddened to

> find out your child has apraxia. And as I was one of those parents

> it's never " just " apraxia when you find out!!!

>

> It's OK to be upset " just " because your child is a " late talker "

too!

>

> Please know that I too believed Tanner to just have apraxia and have

> my first message posted to a grouplist about that below.but down the

> road found out he had a few other things we needed to help him

> address. The incredible news is that the majority of our children if

> you check history are up to speed to be mainstreamed by

kindergarten-

> and of course many have learned with communication impaired children

> that it's best to start kindergarten at 6 vs. 5 to give them that

one

> extra year of therapy and developmental time.

>

> If you have questions after reading the following please share them.

> This group has always been a wealth of information for all of us, no

> matter how long we've been here.

>

> Below is a new member archived message to hopefully answer more of

> your questions for now (did you read The Late Talker yet?) For

updated

> information on fish oils and vitamin E and more - please visit the

> links section here

> /links

>

> What type of apraxic like speech behaviors are you seeing that makes

> you and the SLP suspect your child has apraxia vs. a simple delay in

> speech? Is your child talking at all yet? At your child's age -

> without speech, it's difficult to diagnose verbal apraxia -they

> could " suspect " verbal apraxia and begin treatment just in case,

> which wouldn't hurt your child if he ended up just having a simple

> delay. Just a few questions before we could provide more accurate

> answers:

>

> Does your child have signs of oral apraxia? (for example, can he on

> command smile, imitate funny faces, blow bubbles...if you put peanut

> butter anywhere around his mouth can he lick it off no matter where

> it is?)

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

>

> Does your child have any neurological " soft signs " such as hypotonia

> or sensory integration dysfunction?

>

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsig

ns.html

>

> Who else evaluated your child? Was it only the SLP through your

> town school or was he also in Early Intervention through the state?

> (birth to three) Was he evaluated by both a speech pathologist as

> well as an occupational therapist? Was/were they knowledgeable

> about apraxia? (If your child wasn't diagnosed by an occupational

> therapist as well and professionals suspect apraxia -I highly

> recommend you request that too either through both the school as

> well as private through insurance for many reasons)

>

> To answer any questions you may have about taking your child to see

a

> neurodevelopmental MD if he has not yet been to one and apraxia is

> suspected... in one word - " Yes!!! " I would have your child diagnosed

> (private) by a neurodevelopmental medical doctor (developmental

> pediatrician or pediatric neurologist) who is knowledgeable about

> apraxia and other neurologically based multi-faceted communication

> impairments for numerous reasons. Reasons include (but not limited

> to)

>

> *having a " hero " on the outside of the school who can assist in a

> therapeutic plan and oversee your child's development over the years

> *advocacy support with the insurance company

> * ruling out or confirming any neurological soft signs or any other

> reasons for the delay in speech

> *help those that ask " why isn't he talking yet " understand this is a

> medical condition -and has nothing to do with your child's cognitive

> ability. (if in your child's case it doesn't. Apraxia in itself

> does not affect a child's cognitive ability -and speaking early or

> late is no indication of a child's intelligence. Also contrary to

> popular belief -most who have speech impairments have average to

> above average intelligence)

>

> Here's an article written by Neurodevelopmental Pediatrician Dr.

> Marilyn Agin that was featured as a cover article in Contemporary

> Pediatrics -a trade magazine for hundreds of thousands of pediatric

> medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " -when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or

garden

> variety " late bloomers. " Some have a speech-language disorder that

> will persist unless warning signs are recognized and intervention

> comes early. Includes a Guide for Parents. "

>

> Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

> http://contemporarypediatrics.modernmedicine.com/radio_peds4

>

> Actual article (where you can read it for free)

>

> http://drgreene.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

> or

> http://opsc.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

>

> My parent guide still works (for free)

>

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/co

ntpeds/492004/136315/article.pdf

>

>

> I would also have at least one private " out of pocket " (if possible)

> exam with a knowledgeable speech pathologist as well. This SLP can

> coordinate with your child's MD, and school therapist and other

> professionals, and again be there to assist in a therapeutic plan,

> help set goals and oversee your child's development over the years

> if needed.

>

> Networking with parents of other speech-impaired children is also

> possibly one of the best moves you could make in your child's

> recovery. Others will steer you to the " right " professionals and

> programs in your area -and you won't feel so alone. I would HIGHLY

> recommend joining a whose goal is to unite parents and

> professionals. This group

> / is through CHERAB

> http://www.cherab.org

>

> The speechville website also has message boards so that you can talk

> to other parents on particular topics.

> http://www.speech-express.com/boards/

>

> Check your state resources at Speechville to find local support

> groups and resources.

> http://www.speech-express.com/regional-resources.html

> http://www.speech-express.com/communication-station/regional-

support-groups.html

> (BTW -for anyone who is either running or starting a support group -

> due to The Late Talker book and the many who will see your group,

> please make sure your info is up at this website and accurate)

>

> For all your other questions including what type of testing -just

> read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

> It!') At Amazon.com you can even start today and read sample pages

> of the book online!

>

> " The first book to show parents how to tell whether a child has a

> speech delay -or a more serious speech disorder

>

> Every parent eagerly awaits the day his or her child will speak for

> the fist time. For millions of mothers and fathers, however,

> anticipation

> turns to anxiety when those initial, all-important words are a long

> time

> coming. Many worried parents are reassured that their child is " just

> a late

> talker, " but unfortunately, that is not always the case. Co-author

>

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Guest guest

-

I know I responded 1 time already to this but this sure was alot of

info to read so I read it again.... I looked over some of the signs

of apraxia that were listed the things that my son meet were only

little to no babbling, frustration and solid food transition which he

is still having a hard time with... I am not sure if I had wrote in

my letter before which I do not know if this has anything to do with

him maybe not talking but he had a little rough start to his entrance

in this world..... He has ( still has but minimal problems with now)

GERD and Laryngomalacia. I brought that up today in the therapy

session and they kinda looked at me crazy... Have you ever heard of

this delaying there speech? You sure have a lot of information to

share I definatly appreciate it....

-- In , " kiddietalk "

<kiddietalk@...> wrote:

>

> It's not that the therapy at home is always better than the therapy

> at the clinic -it depends on the therapist. Sounds like the one you

> had at the clinic lucked out in odds to keep her job since 75% of

> late talkers are just that -children that speak a bit late with or

> without therapy. The fact that she promised you that " by 2 he'll be

> up to 200 words " was probably just one of many clues. 75% of the

> time she was correct!

>

> But why am I also falling into the trap of assuming there is a

> diagnosis? Your child is only 22 months old and it's still possible

> he's part of the 75% group! It's possible the therapist leaning

> towards an apraxia diagnosis is wrong. If you listen to some of the

> apraxia " experts " out there they'll tell you apraxia can't even be

> diagnosed until 3 years old. Of course in this group we know that's

> not true but the point is there are specific things to look for. If

> your child is delayed in speech then speech therapy (with a good

> therapist) will help -can't hurt...but if it's apraxia you want to

> know so your child can get the appropriate more intensive therapies

> early.

>

> Have you read The Late Talker book? It may help you either way.

>

> An apraxia diagnosis not as dismal as you may believe. The

> overwhelming majority over the years here have children that are

> diagnosed with apraxia at some point from two years old to even as

> late as nine years old and learn to be verbal communicators

> mainstreamed in school and life. Then there's the whole other large

> and growing group of apraxic children who are misdiagnosed as

> autistic who don't end up with the right therapy for months or years

> and remain nonverbal until they end up getting the right diagnosis

> and overcome. If apraxia is suspected you probably want to go for a

> second opinion with another SLP -and you probably want to also take

> your child to a knowledgeable neurodevelopmental pediatrician or

> pediatric neurologist which I have more on below. Don't let that

> overwhelm you -the next therapist or the neuroMD may say they don't

> see any signs of anything other than a simple delay in speech. Even

> without a diagnosis of course if your child is delayed a certain

> percentage he should be qualified for Early Intervention through

your

> state. Or are you outside the US?

>

> You don't mention any signs other than the not talking yet so after

> reading through some of the following let us know if there are any

> other signs. It's OK to cry -we all do when we first hear

a " leaning

> towards " diagnosis (or months later when it really hits us) but the

> good news is that the chances are that like most of us you'll find

> yourself shocked to be telling your child to " stop talking so much

> and get ready " because you are in a rush to get them to school or

> whatever!

>

> To listen to various children with apraxia at various ages you can

go

> to Bilker's talking page which was inspired by his son

> who is now a teenager. My son Tanner who just turned 12 is also on

> this page as well as Khalid who is twenty something now! It seems

we

> now have more parents of teens with apraxia in this group than ever

> before as this group has been around for close to 9 years now!

> http://www.debtsmart.net/talk/index.html

>

>

> Below is a very long archive on just about all you need to know to

> get your child from 0 to 60 mph in speech. (including info about

> fish oils!)

>

>

> Re: Hi! New and wondering about apraxia.

>

>

> Hi Mrs Laurie and welcome!

>

> Your son sounds like he has some oral apraxia which would of course

> need to be confirmed by professionals. If oral apraxia is present

> together with your child's delay he should at least be diagnosed

> as " suspected apraxia " and appropriate therapy should be provided.

> He is entitled by federal law to a free and appropriate public

> education (FAPE) in the least restrictive environment (LRE) which

> means that if 5 days of one on one speech therapy is appropriate for

> him then that's what he should receive. What type of speech therapy

> is he receiving from the school right now when you say " some " ?

>

> Below is a very long archive to help -please know that you don't

have

> to understand it all at once -we're here as a group to help!

>

> Thanks for sharing. This group has from the start been a group

> that's made up of parents and professionals who care for children

> with many types of speech and/or language delays and/or disorders.

> There are parents here for example with undiagnosed " late talkers "

> and we just have not heard from them in awhile. It's actually a

> really good thing when there is a mix of us to share because we all

> learn from each other as many diagnoses can overlap -or down the

road

> we learn that our child does have co diagnosis.

>

> While this group is open to parents of all children with

> communication impairments -including hearing impaired, autistic etc.

> it wasn't that all that posted recently had a child with autism, or

> autism and apraxia -but because of society focus on autism -many

here

> started following an autism approach -including ABA in some cases!

> That's understandable if the much more basic approach to apraxia -ST

> and OT and EFAs were tried first and didn't work -but some were

> trying that to start.

>

> The overwhelming majority (if you check the archives) have success

> with the basic approach to apraxia.

>

> On the other hand- most of us are dealing with more than verbal

> apraxia.we just don't know that when our child is 2 -and we learn

> through professionals and observations as they continue to grow and

> more and more is expected of them. This is also why it's important

> to take your child for a neurodevelopmental medical exam when your

> child is suspected of apraxia to confirm or rule out other diagnosis

> such as sensory integration dysfunction etc. The earlier you know -

> the sooner to start appropriate therapies to get them up to speed by

> kindergarten.

>

> Don't let it overwhelm you -perhaps we aren't meant to know more

> than what we have to know at each stage. We'll be here to help along

> the way. It's OK to have any type of emotion when we find out our

> child has more than a simple delay -or " more " than " just " verbal

> apraxia. And it's OK to be completely overwhelmed and saddened to

> find out your child has apraxia. And as I was one of those parents

> it's never " just " apraxia when you find out!!!

>

> It's OK to be upset " just " because your child is a " late talker "

too!

>

> Please know that I too believed Tanner to just have apraxia and have

> my first message posted to a grouplist about that below.but down the

> road found out he had a few other things we needed to help him

> address. The incredible news is that the majority of our children if

> you check history are up to speed to be mainstreamed by

kindergarten-

> and of course many have learned with communication impaired children

> that it's best to start kindergarten at 6 vs. 5 to give them that

one

> extra year of therapy and developmental time.

>

> If you have questions after reading the following please share them.

> This group has always been a wealth of information for all of us, no

> matter how long we've been here.

>

> Below is a new member archived message to hopefully answer more of

> your questions for now (did you read The Late Talker yet?) For

updated

> information on fish oils and vitamin E and more - please visit the

> links section here

> /links

>

> What type of apraxic like speech behaviors are you seeing that makes

> you and the SLP suspect your child has apraxia vs. a simple delay in

> speech? Is your child talking at all yet? At your child's age -

> without speech, it's difficult to diagnose verbal apraxia -they

> could " suspect " verbal apraxia and begin treatment just in case,

> which wouldn't hurt your child if he ended up just having a simple

> delay. Just a few questions before we could provide more accurate

> answers:

>

> Does your child have signs of oral apraxia? (for example, can he on

> command smile, imitate funny faces, blow bubbles...if you put peanut

> butter anywhere around his mouth can he lick it off no matter where

> it is?)

> http://www.cherab.org/information/speechlanguage/oralapraxia.html

>

> Does your child have any neurological " soft signs " such as hypotonia

> or sensory integration dysfunction?

>

http://www.cherab.org/information/speechlanguage/parentfriendlysoftsig

ns.html

>

> Who else evaluated your child? Was it only the SLP through your

> town school or was he also in Early Intervention through the state?

> (birth to three) Was he evaluated by both a speech pathologist as

> well as an occupational therapist? Was/were they knowledgeable

> about apraxia? (If your child wasn't diagnosed by an occupational

> therapist as well and professionals suspect apraxia -I highly

> recommend you request that too either through both the school as

> well as private through insurance for many reasons)

>

> To answer any questions you may have about taking your child to see

a

> neurodevelopmental MD if he has not yet been to one and apraxia is

> suspected... in one word - " Yes!!! " I would have your child diagnosed

> (private) by a neurodevelopmental medical doctor (developmental

> pediatrician or pediatric neurologist) who is knowledgeable about

> apraxia and other neurologically based multi-faceted communication

> impairments for numerous reasons. Reasons include (but not limited

> to)

>

> *having a " hero " on the outside of the school who can assist in a

> therapeutic plan and oversee your child's development over the years

> *advocacy support with the insurance company

> * ruling out or confirming any neurological soft signs or any other

> reasons for the delay in speech

> *help those that ask " why isn't he talking yet " understand this is a

> medical condition -and has nothing to do with your child's cognitive

> ability. (if in your child's case it doesn't. Apraxia in itself

> does not affect a child's cognitive ability -and speaking early or

> late is no indication of a child's intelligence. Also contrary to

> popular belief -most who have speech impairments have average to

> above average intelligence)

>

> Here's an article written by Neurodevelopmental Pediatrician Dr.

> Marilyn Agin that was featured as a cover article in Contemporary

> Pediatrics -a trade magazine for hundreds of thousands of pediatric

> medical professionals across the US. (I wrote the parent guide)

>

> " The " late talker " -when silence isn't golden

> Not all children with delayed speech are " little Einsteins " or

garden

> variety " late bloomers. " Some have a speech-language disorder that

> will persist unless warning signs are recognized and intervention

> comes early. Includes a Guide for Parents. "

>

> Podcast interview with Dr. Marilyn Agin from Contemporary Pediatrics

> http://contemporarypediatrics.modernmedicine.com/radio_peds4

>

> Actual article (where you can read it for free)

>

> http://drgreene.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

> or

> http://opsc.mediwire.com/main/Default.aspx?

P=Content & ArticleID=132720

>

> My parent guide still works (for free)

>

http://www.contemporarypediatrics.com/contpeds/data/articlestandard/co

ntpeds/492004/136315/article.pdf

>

>

> I would also have at least one private " out of pocket " (if possible)

> exam with a knowledgeable speech pathologist as well. This SLP can

> coordinate with your child's MD, and school therapist and other

> professionals, and again be there to assist in a therapeutic plan,

> help set goals and oversee your child's development over the years

> if needed.

>

> Networking with parents of other speech-impaired children is also

> possibly one of the best moves you could make in your child's

> recovery. Others will steer you to the " right " professionals and

> programs in your area -and you won't feel so alone. I would HIGHLY

> recommend joining a whose goal is to unite parents and

> professionals. This group

> / is through CHERAB

> http://www.cherab.org

>

> The speechville website also has message boards so that you can talk

> to other parents on particular topics.

> http://www.speech-express.com/boards/

>

> Check your state resources at Speechville to find local support

> groups and resources.

> http://www.speech-express.com/regional-resources.html

> http://www.speech-express.com/communication-station/regional-

support-groups.html

> (BTW -for anyone who is either running or starting a support group -

> due to The Late Talker book and the many who will see your group,

> please make sure your info is up at this website and accurate)

>

> For all your other questions including what type of testing -just

> read " The Late Talker " . (Nike said 'Just Do It!' -I say 'Just Read

> It!') At Amazon.com you can even start today and read sample pages

> of the book online!

>

> " The first book to show parents how to tell whether a child has a

> speech delay -or a more serious speech disorder

>

> Every parent eagerly awaits the day his or her child will speak for

> the fist time. For millions of mothers and fathers, however,

> anticipation

> turns to anxiety when those initial, all-important words are a long

> time

> coming. Many worried parents are reassured that their child is " just

> a late

> talker, " but unfortunately, that is not always the case. Co-author

>

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http://childrensspecialists.com/body.cfm?id=464

Bottom line in my book is that with my kid, the acid reflux made it

hard to talk as did the laryngomalacia...who can talk well when you

have acid in your throat, are not absorbing enough nutrients, your

doctor misses these conditions so your parents have you sleeping (or

shall I say screaming) on your back, and to boot your breaathing is

labored. Oxygen loss is likely not good for motor planning.

The stridors did not leave in our case until we removed an allergen, at

age 2 years, 3 months. Never returned after that.

Initial speech was breathy and there was difficulty with hard

consonants. I need that was I knee hat.

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---

Devin has outgrew the GERD to an extent but still has some issues

with it. We thought when he became mobile he would like most children

become cured so to speak of it but that did not happen but it did get

better... He still takes 2 medicines for it and will eventually be

off of those....Thank you for the info.

In , " kiddietalk "

<kiddietalk@...> wrote:

>

> Little to no babbling, frustration and solid food transition could

be

> any number of reasons in a 2 year old. For sure anything with

eating

> problems should be evaluated by an oral motor specialist. Here's

two

> pages from my son's one SLP that may help:

> http://cherab.org/information/speechlanguage/feeding.html

> http://cherab.org/information/speechlanguage/mealtimetips.html

>

> GERD isn't linked to apraxia but it has come up here a few times as

> it's not unusual in children. My nephew had it and outgrew it.

> Here's some info on it from the American Academy of Otolaryngology.

> http://otolaryngologyheadandnecksurgery.org/KidsENT/GERD.cfm

>

> Apraxia doesn't seem to be linked to laryngomalacia in any way. In

> this group over the close to 10 years and thousands of members there

> are only two posts one each by just two members that ever mentioned

> laryngomalacia and only one child also had apraxia. The one child

that

> also has tracheobronchomalacia but without an apraxia diagnosis has

> severe asthma, immune deficiency, seasonal and food allergies. That

> mom's email address is osdbmom@... and here's and archive from

> the parent of the one child with laryngomalacia with apraxia.

>

> " There were two events in his life that may have contributed to the

> apraxia

> that I can pinpoint (outside of the fact it may have happened in

utero)-

>

>

> 1) He had a bronchoscopy at 5 weeks of age and was diagnosed with

> Laryngomalacia (floppy larynx) and had difficulty eating/breathing

at

> the

> same time. He turned blue his first night of life. He supposedly

> outgrew it

> within a year.

>

> 2) When he was 18 mos he fell off of a chair at preschool and hit

his

> head

> on the base of a large shade umbrella- stitches on the inside and

> outside (24

> total) of his head. We did not do an MRI or CT Scan- also curious

if

> he was

> affected by this injury.

>

> The wonder will more than likely always be there- but it does not

> change the

> outcome. All we can do is keep communicating with one another to

try

> and

> help our children become better communicators themselves! Thanks

and

> good

> luck with your research.

>

> le Roseborough

> joelle1017@...

> Mom to Tanner, 4 yrs. with Apraxia "

>

> Best thing to do with a 2 year old late talker is seek evaluations

to

> find out the best type of therapies (strength, oral motor, motor

> planning, sensory etc) and begin that therapy as well as follow

through

> at home. Keep track of progress and if no progress in 3 months

examine

> therapy, therapist and/or diagnosis.

>

> =====

>

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  • 7 months later...

Hi everyone,

I read every night, but don't get to post often. I need some guidance on a few

things. I've had some really bad days this month, and am trying to climb my way

out of the hole I'm in.

A little background, my daughter, has hypotonia, CP, Global Delay, and

apraxia. She began walking at 22 months, now runs, doesn't jump off the ground

yet, can walk the stairs. She wears dafos, but now going to a leg brace and

theratogs. Today, we found out she needs glasses. She says only a few words

like Hi (all the time), da da, Allie (her sister) Ollie (the dog), wa wa, bra

bra (grandma), mmm (mom), and home. Her signing and gross motor imitation is

getting a lot faster. She can tell me what she wants to eat with signs.

I am really lost when it comes to preschool. She has been in the EI 0-3 program

since she was 5 months old. My husband and I have had to fight for all of her

services. It is now time to do a transition plan for preschool. We've dealt

with many rude comments like " The gap is just going to keep getting bigger, and

I'll shake 's dry hand (from one of her teachers.) This makes me sick to

my stomach- I am a teacher myself. I really feel that the teachers are trying

to get rid of us because we are such a pain. They want to send to a

neighboring district CI program, but won't come out and say it. We are not

getting a cognitive test done yet, because it is way to early in our minds.

I need to know what kind of services other children delayed like

receiving from their districts. Right now, she receives 2 group speech (a waste

of time, but we call it school), 1 Ot and Pt every other week, and 1 private

speech a week. We has asked for an extension for our meeting because I want to

go in with data. I am also waiting for someone from the county to come out and

evaluate to see if an augmentative? device would benefit her.

We do private therapy at the Kaufman Center 3 times a week on our own. She also

does horse.

I am really struggling as a mom to and my typical children, a woman, a

wife, and a full time teacher. I feel like there are not enough hours in the

day. Sorry, I'm really emotional. I really need to know how others balance it

all out and feel like they are doing as much as they can for their children. I

have become obsessed over the last 2.5 years with helping .

One last question, I am at a loss for potty training . She will sit on

the potty make grunting noises, but nothing. She has gone 7 times, but I think

I just timed it right. I know the sign for #2, but not for #1. I don't know

what to do.

I am so sorry, I am just so down feeling like I should do and know more to help

.

Any suggestions would be helpful.

Thank you,

Sandy

www.nataliehopesjourney@...

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Hi,

  I live in NY and my daughter has CP and is much more severely affected than

your daughter is. She walks with a walker and uses a communication device for

speech and computer access. She will be 8 years old next month.

   For PreK, she went to a 'regular' private preK where she was the only child

with any disability, and the only one recieving therapy. She got Speech

45minutes, 3x/wk,  PT 45mins, 3x/wk., OT 30mins, 3x/wk., and a SEIT 60 mins,

3x/wk. All of her therapists saw her at school twice a week and came to our home

once a week.

  I would definitely push for an Aug Comm Eval and maybe see about getting it

done privately if necessary. She will need to communicate with people who don't

know sign language and even if she continues to progress with speech, she may

need it to clarify her speech as time goes by. I don't think a device is an '

alternative therapy', but a necessity to help with communication and education.

My daughter has begun speaking in complete sentences over the past year or so,

and is still very hard to understand. She uses her device at school to clarify

her thoughts, and to do all her schoolwork. She is in a regular classroom in the

public school with an aide and a SPED teacher who helps with modifying the work.

She is doing really well, reading at grade level and keeping up with her class.

     Many people, teachers included, will assume that if someone can't speak,

that they don't understand. Sad, but true. I agree with 's suggestion to get

a receptive eval done and show them what she understands. She sounds like she is

doing very well and her disabilities should be accomodated so she can continue

to progress. She needs supports, so you know she needs to have some delay to

recieve them. the key to getting the right kind of help is haveing someone who

understands speech delays to do the testing , as said. We had to have an

Educational Eval done at age 3 when we entered the school district. That eval is

what led to having a SEIT for preK. I'm not sure if it is the same in all

states, but you may have to have this eval done too. It is not an IQ test, but

shows whether she is prepared to go  into  the regular ed program without any

support. So a poor eval may actually help you to get more services.

    At the preK level, I would place her privately if there is no appropriate

placement for her in the public school. Get her services at the private school

or take her to the public school for services only.

  I hope this is helpful.

                                                                            

From: Jake Groups <jtanana3_groups@...>

Subject: [ ] need some guidance

hypotoniahope , ,

OurSpecialNeedsChildren

Date: Monday, February 16, 2009, 10:57 PM

Hi everyone,

I read every night, but don't get to post often. I need some guidance on a few

things. I've had some really bad days this month, and am trying to climb my way

out of the hole I'm in.

A little background, my daughter, has hypotonia, CP, Global Delay, and

apraxia. She began walking at 22 months, now runs, doesn't jump off the ground

yet, can walk the stairs. She wears dafos, but now going to a leg brace and

theratogs. Today, we found out she needs glasses. She says only a few words like

Hi (all the time), da da, Allie (her sister) Ollie (the dog), wa wa, bra bra

(grandma), mmm (mom), and home. Her signing and gross motor imitation is getting

a lot faster. She can tell me what she wants to eat with signs.

I am really lost when it comes to preschool. She has been in the EI 0-3 program

since she was 5 months old. My husband and I have had to fight for all of her

services. It is now time to do a transition plan for preschool. We've dealt with

many rude comments like " The gap is just going to keep getting bigger, and I'll

shake 's dry hand (from one of her teachers.) This makes me sick to my

stomach- I am a teacher myself. I really feel that the teachers are trying to

get rid of us because we are such a pain. They want to send to a

neighboring district CI program, but won't come out and say it. We are not

getting a cognitive test done yet, because it is way to early in our minds.

I need to know what kind of services other children delayed like

receiving from their districts. Right now, she receives 2 group speech (a waste

of time, but we call it school), 1 Ot and Pt every other week, and 1 private

speech a week. We has asked for an extension for our meeting because I want to

go in with data. I am also waiting for someone from the county to come out and

evaluate to see if an augmentative? device would benefit her.

We do private therapy at the Kaufman Center 3 times a week on our own. She also

does horse.

I am really struggling as a mom to and my typical children, a woman, a

wife, and a full time teacher. I feel like there are not enough hours in the

day. Sorry, I'm really emotional. I really need to know how others balance it

all out and feel like they are doing as much as they can for their children. I

have become obsessed over the last 2.5 years with helping .

One last question, I am at a loss for potty training . She will sit on

the potty make grunting noises, but nothing. She has gone 7 times, but I think I

just timed it right. I know the sign for #2, but not for #1. I don't know what

to do.

I am so sorry, I am just so down feeling like I should do and know more to help

.

Any suggestions would be helpful.

Thank you,

Sandy

www.nataliehopesjou rney (DOT) com

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  • 4 months later...
Guest guest

Nelia,

 

I too am dealing with lousy test results right now.  As a matter of fact, I had

to take a daggon day off from work last night to get a hold of myself.  My son

will be 4 in September and just ranked in the 1st percentile on the

Goldman-Fristoe Test of Articulation.  The 1st....after 100 hours of speech

therapy a week.  After PROMPT and Kaufman therapies.  After fish oils.  After

working with him at home.  After Early Intervention and a Special Needs

Preschool and an IEP.  The 1st.  It's devastating.  That said, after wallowing

in a glass of wine last night, and reading his test results over and over and

over again - I am hitting the ground running today.  What can we do to improve

his language and articulation?  What is the best course of action?  What's

next?  Should we add another session of therapy a week?  Should be consider

seeing a pediatric neurologist?   These are all the questions I hope to ask his

SLP today because as

soon as her office opens, I am calling to see if she can meet with me - sans

kids - so I can get a better idea of what's next and what these test scores

actually mean.

 

Dealing with 's apraxia has been one of the biggest challenges I have ever

faced.  And I know it's even harder for him.  That's what I keep reminding

myself every single day.  Every day that passes - we are one step closer to

kindergarten.  So if I can just pull it together that day, and try and help him

through this challenge he has been faced with, then maybe, just maybe, he

will overcome this.   Shelving my grief and exhaustion and putting my job on the

back burner has been anything less than easy, but totally necessary for him.

 

My advice on test results is to embrace them and use them as a map to help you

figure out how you can best help your daughter.  Test results ARE SCARY.  A fear

we must face so that we might unlock the underlying cause of the problem - and

then treat it appropriately.  It's 6:28am here in Columbus, OH....time to start

the day.

 

Good luck to you :)

 

Gretchen

From: nelianoonsi <nelia_nunes@...>

Subject: [ ] need some guidance

Date: Wednesday, July 8, 2009, 2:32 PM

My daughter is 2-3/4- she'll turn 3 in October.  She has global developmental

delays, dyspraxia, and sensory processing issues.  She has significant delays-

she is walking, climbing, has a good pincer grasp, is very vocal (she has a lot

to " say " ), but isn't saying more than a few true words.  She has said about 50

words total in her lifetime, but they come and then go.  Sometimes they come

back, sometimes they are said once or twice and never heard again.  Her

receptive language is delayed, as is her cognitive development and her self help

skills. She definitely doesn't " get " as much as kids her age.  The Bayley Scales

test that she took about 6 months ago rated her cognitive level as a 55.  I

literally cried every day for a month and a half.  The worst part is that ever

since then every day the words " mentally retarded " enter my mind.   I hate it- I

am want to see her for HER, and not a label.  She's such a wonderful and happy

little girl. 

I know that there were some things that she does get that she didn't show...

for example, she didn't pull the towel off of the toy to get it. I know she has

that skill, we do it at home all of the time.  But she just wasn't interested. 

Nonetheless, I know that even if she had showed all of the skills that she has,

that she still would have scored very low.

Next month we're going to see a neuropsych again, to get some recommendations on

how to help her moving forward, as she is going to enter the school district in

a few months.  I am DREADING it.  I know how depressed I was last time and I

know what I am in for. 

Did anyone out there have a child this severely delayed at this age?  Any tips

for helping me deal with the test results?  I want to look at my little girl and

see all of her strengths.. that I know that will be taken away for a bit is sad

to me and I am looking for guidance. 

Thank you!

Nelia

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

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Nelia,

First of all......take some deep breaths.  This journey sometimes runs the gamut

for us in regards

to emotions.Thats ok.  We get depressed, sad, angry, mad and everything in

between.

I know exactly the feelings that seem to totally overwhelm us.  You can get

through this one

day at a time. 

My son only spoke his first word at 4.5 years old. so ya, i get it.  Just

remember as well, that

when our kids are tested they always seem to do less that we know they can do.

Double edged sword

that one.  We need help for our kids, so sometimes when they're testing on an

" off " day that gets us

in the door for the help we need.  On the other hand, we hate seeing our kids

struggle.

I've tried to stop comparing my son to other children, it puts me in a place

where i don't want to be.

all i do now is marvel at the progress he's made, and feel pride when others

tell me how far he's come.

We celebrate every gain he makes and we see now how truly amazing he is to be

able to get through

his day with smiles and grace.

I was terrified when my son started school. How was he going to do it when he

had no words, will he

be safe?  He surprised us all(as usual) and absolutely loves school.  Was it a

struggle for me? yes, i

learned very quickly to channel my emotions into helping advocate for my son. 

anger came in

very handy sometimes!!  Most times though calm logic works best.

You can do this.  You are her advocate and champion. You will celebrate her

gains more than mothers

of " typical " children will.  Take time to acknowlege your feelings and fears,

they're normal.  But you will

surprise yourself with how well you will advocate for your daughter.

be well,

sandy

mom to 9 years old(10 next month!)

________________________________

From: nelianoonsi <nelia_nunes@...>

Sent: Wednesday, July 8, 2009 2:32:19 PM

Subject: [ ] need some guidance

My daughter is 2-3/4- she'll turn 3 in October. She has global developmental

delays, dyspraxia, and sensory processing issues. She has significant delays-

she is walking, climbing, has a good pincer grasp, is very vocal (she has a lot

to " say " ), but isn't saying more than a few true words. She has said about 50

words total in her lifetime, but they come and then go. Sometimes they come

back, sometimes they are said once or twice and never heard again. Her receptive

language is delayed, as is her cognitive development and her self help skills.

She definitely doesn't " get " as much as kids her age. The Bayley Scales test

that she took about 6 months ago rated her cognitive level as a 55. I literally

cried every day for a month and a half. The worst part is that ever since then

every day the words " mentally retarded " enter my mind. I hate it- I am want to

see her for HER, and not a label. She's such a wonderful and happy little girl.

I know that there were

some things that she does get that she didn't show... for example, she didn't

pull the towel off of the toy to get it. I know she has that skill, we do it at

home all of the time. But she just wasn't interested. Nonetheless, I know that

even if she had showed all of the skills that she has, that she still would have

scored very low.

Next month we're going to see a neuropsych again, to get some recommendations on

how to help her moving forward, as she is going to enter the school district in

a few months. I am DREADING it. I know how depressed I was last time and I know

what I am in for.

Did anyone out there have a child this severely delayed at this age? Any tips

for helping me deal with the test results? I want to look at my little girl and

see all of her strengths.. that I know that will be taken away for a bit is sad

to me and I am looking for guidance.

Thank you!

Nelia

__________________________________________________________________

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Hi Nelia,

First of all take a deep breath............. Now, you said your daughter was

tested 6 months ago, so that puts her just over 2 years old. Any good

psychologist will tell you, it is VERY had to get accurate test results on

someone that young. Like you said, toddlers are on their own time schedule.

They do things when THEY want, not when the person assessing them wants!! Also

throw in significant expressive delays and sensory issues...it makes testing

them THAT much harder!!

Just keep up with the therapy from early intervention. Start preparing yourself

for school district placement (if you go that route) and try to get as much

therapy from them as possible. The school district will also do their own

assessments. See if your early intervention will have an OT assess her (if you

haven't already). They will help with any fine motor delays (even though you

said she has a good pincher grasp, maybe she has other delays) and sensory

processing issues. Sensory issues can really make " our " kids delays look worse

(if that makes sense??).

Hang in there! and TRY to do something nice for yourself. Sometimes we are too

hard on ourselves. I know if I didn't go to my occasional yoga class and have a

good glass of red wine, I would probably LOOSE IT!!

Good Luck and know you aren't alone :-)

Jenna (mom to Larsyn 3.3 yo and Chance almost 6)

Orange County, CA

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Hi Neila,

Although my little guy (2.3 years old) doesn't have a global delay, he does very

noticeably lag behind his peers in certain areas (speech, gross motor,

coordination) and he too has sensory issues. When I first found out about my

son's disorder I went through a period of grief and depression that lasted for

months. I couldn't help but see how he wasn't doing well at certain things and

I worried horribly about the future. I too wanted to see his strengths but was

really distracted by the weaknesses.

I am now at a point where I feel much better. It helped me to focus on the

small victories. It also helped to go to a playgroup setting that had lots of

kids of various ages where I didn't really know any of them well so I didn't

know their exact ages so couldn't really compare my son to them. It's hard to

find out that life is going to be much much different than you expected. But

your daughter will have strengths and do things that give you beautiful moments.

I'll have to post my story here soon. I've been lurking and learning here for

months so I'm due to give an intro. Your post stood out for me though because I

know just how sad and worried I felt when I first found out. I wanted to let

you know that you can push past that but it will take some time. It's very hard

at first. My heart goes out to you.

~Jen

>

> My daughter is 2-3/4- she'll turn 3 in October. She has global developmental

delays, dyspraxia, and sensory processing issues. She has significant delays-

she is walking, climbing, has a good pincer grasp, is very vocal (she has a lot

to " say " ), but isn't saying more than a few true words. She has said about 50

words total in her lifetime, but they come and then go. Sometimes they come

back, sometimes they are said once or twice and never heard again. Her

receptive language is delayed, as is her cognitive development and her self help

skills. She definitely doesn't " get " as much as kids her age. The Bayley Scales

test that she took about 6 months ago rated her cognitive level as a 55. I

literally cried every day for a month and a half. The worst part is that ever

since then every day the words " mentally retarded " enter my mind. I hate it- I

am want to see her for HER, and not a label. She's such a wonderful and happy

little girl. I know that there were some things that she does get that she

didn't show... for example, she didn't pull the towel off of the toy to get it.

I know she has that skill, we do it at home all of the time. But she just

wasn't interested. Nonetheless, I know that even if she had showed all of the

skills that she has, that she still would have scored very low.

>

> Next month we're going to see a neuropsych again, to get some recommendations

on how to help her moving forward, as she is going to enter the school district

in a few months. I am DREADING it. I know how depressed I was last time and I

know what I am in for.

>

> Did anyone out there have a child this severely delayed at this age? Any tips

for helping me deal with the test results? I want to look at my little girl and

see all of her strengths.. that I know that will be taken away for a bit is sad

to me and I am looking for guidance.

>

> Thank you!

> Nelia

>

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