Re: finally have a possible diagnosis of dyspraxia (not just a late talker)

[Guest guest]

Hi Jody!

Your question is something I'm working on right now -so I'll take

another break and answer as a parent. I have two sons that were both

late talkers. My oldest son had birth trauma -and was overseen by a

neurologist from birth and mostly received OT because the damage to

his neck and head, including his face, which caused eating and

breathing problems. In spite of the fact he had a 6 month delay at 2

and was very delayed at three - he learned to speak normally and with

very little speech therapy. Most of his oral motor problems from the

crushed nerves the OT in the neurologists office worked on. He's fine now.

My second was my " normal " baby who was progressing just fine till 11

months -babbling, nursed for 6 months with no trouble, etc. then he

went through high fevers and he was never the same. He stopped

babbling except for " ma " stopped making facial expressions for the

most part, he kind of just stared at everything I didn't know the

signs of hypotonia and sensory integration back then -but if I did -

he was easy to spot, so was the oral apraxia which 2 and a half years

ago wasn't even mentioned on any apraxia sites, and he wasn't talking

for me to know if he had signs of verbal apraxia -and he didn't have

the early " signs " of apraxia since he babbled, etc. Why would I

think to bring him to a neurologist, etc. when his pediatric group

didn't think it mattered that he stopped babbling and seemed

lethargic, etc. He was always bright and past all his developmental

milestones on time or early. And in addition -my Aunt Betty didn't

speak until three and now she speaks 3 languages fluently.

So you know what, to answer you Bridget, I agree -when I got the

diagnosis of apraxia for Tanner at that time I really didn't think he

had it -but in my gut I knew something wasn't right -he just didn't

fit the signs of what I read online -and there was nothing parent

friendly back then either. What saved me was a grouplist like this -

that's how I found out about developmental pediatricians (which I

also never heard of that before -which led me to Dr. Marilyn Agin)

that's how I found the only website at that time that I related to

and that made me cry. That website? Bilker's talking page

http://www.debtsmart.com/talk -the quality of 's voice on his

first recording sounded like Tanner's " ma " - everyone agreed with that. It

was through that grouplist from about 8 other parents I learned about

EFAs and then we talked about it to much and we were asked to start

another list if we wanted to keep talking about it (how the speech

diet list started) 9 months later after EFAs and all I put my son

Tanner on the talking page (so his first recording was after 9

months of EFAs and therapy -and he was doing amazing!)

You are right Jody that most late talkers will just start talking

like my son Dakota -in spite of all his trauma. There is a rise

however in children that do not just start talking. If your child

has signs of hypotonia (even mild which can be diagnosed by a

developmental pediatrician or pediatric neurologist) or your child

has " signs " of apraxia-it's best to know. The difference would be

the therapy -the amount and the type. And yes it makes a world of

difference.

None of us believed our child wouldn't just start talking -and you

know what -I really don't care about the labels either. I think we

all want the same thing. We just want our children to talk, just

like everyone else. It's just my opinion and everyone won't agree -

but I believe the best way to help that to happen is to raise

awareness about those that don't just start talking -so parents of

late talkers can have something to compare to. I know my husband and

I wish we knew sooner. We too -and everyone else including Tanner's

pediatrician, just thought he was a late talker.

=====

[Guest guest]

This is from Kansas. I have a quick question concerning a

" diagnosis " . Finally a Ped Neurologist did diagnose Breana with

Developmental Apraxia. Now what? Does this help us in some way, or hinder?

Will the insurances now say " we know how much speech therapy Breana

needs..no problem, " or will they deny anything is wrong? Breana has very

severe Apraxis, she is almost 5 and has a very hard time even saying sounds

and the only " words " I hear are " ma, " " no, " , " bye " . Those are not alway

clear. I just wonder what I need to do now for her. The Neurologist is

writing a letter for Bre's other doctors/school that will say how important

ALOT of speech therapy is for her development. He said it will say " the

more the better(therapy). " He also said the other therapies Bre recieves

are not as important as speech, although she also has Sensory Integration

issues and Hypotonia. Oh, I don't know if anybody else has this problem, but

Breana has real bad allergies (mold, trees, etc) and will be starting

allergy shots soon. Any comments? I have said enough. Thank you all for

listening. G, Kansas

[Guest guest]

Your daughter sounds like mine. has apraxia and sensory

integration problems. She also has allergies, but her main problem

from allergies is horrible eczema on her legs. Because of the

sensory problems, she doesn't like lotion put on her legs. It also

is hard to do the brushing technigue to help with the sensory

problems.

Oh well, one day I hope these children will be happy, talking

teenagers.

By the way, 's twin sister told me yesterday. " When

we're teenagers, we won't need to go to a speech therapist. " I told

her she was right. (I know she is right about herself, but I don't

know about .)

--- In @y..., " Glaspie " <eglaspie@h...>

wrote:

> This is from Kansas. I have a quick question concerning a

> " diagnosis " . Finally a Ped Neurologist did diagnose Breana with

> Developmental Apraxia. Now what? Does this help us in some way,

or hinder?

> Will the insurances now say " we know how much speech therapy

Breana

> needs..no problem, " or will they deny anything is wrong? Breana

has very

> severe Apraxis, she is almost 5 and has a very hard time even

saying sounds

> and the only " words " I hear are " ma, " " no, " , " bye " . Those are not

alway

> clear. I just wonder what I need to do now for her. The

Neurologist is

> writing a letter for Bre's other doctors/school that will say how

important

> ALOT of speech therapy is for her development. He said it will

say " the

> more the better(therapy). " He also said the other therapies Bre

recieves

> are not as important as speech, although she also has Sensory

Integration

> issues and Hypotonia. Oh, I don't know if anybody else has this

problem, but

> Breana has real bad allergies (mold, trees, etc) and will be

starting

> allergy shots soon. Any comments? I have said enough. Thank you

all for

> listening. G, Kansas

[Guest guest]

Hi Bridget!

Hey you are preaching to the choir with me! I been down the late

talker road for over 7 years now -and it's not the clear path that

you think. Having a label is a good thing you say? Here's the

problem.

If your child breaks his wrist almost anywhere in the world he'll

probably get the same treatment -a cast.

Late talker? How do you access the reason? Go for a speech and

hearing evaluation -maybe to an OT evaluation too since that's also

typically in the IEPs and OT also stimulates speech, you may also

throw in a neurodevelopmental examination to rule out or confirm soft

signs like hypotonia, SI issues, etc. -and if your child does happen

to get frustrated and starts withdrawing or hitting others -or the

school says he's " manipulative " (happened to a sweet little boy I

know and love) -you may also top it off with a trip to a pediatric

neuropsychologist to get a private evaluation to disprove what other

label him. So don't forget the school evaluations or the Early

Intervention evaluations. OK -now the game is -who's " label " is

correct?

Next question is once you have the label say of broken wrist -what do

you do? If your child has a broken wrist and the doctor does want to

do something to the wrist - she will tell you the options and the

pros and the cons of each.

Late talker? It's so silly that you can go to 3 of each in the same

profession and you may not only get a different label from each -but

top that off with a different therapy treatment. And do you get the

pros and cons of all the therapies out there for your child when you

take your child labeled with apraxia to an SLP, MD, or OT? Will they

tell you the pros and cons of PROMPT, Kaufman, Oral Motor, etc. -and

what about all the alternatives like fish oil, or even cranial

osteopathy done by an MD I've recently heard amazing things about

from Woods who is a nurse from our group? I could go on with

the visual and auditory therapies too.

And most apraxic children do have mild soft signs that should be

addressed like hypotonia and all, some have oral apraxia too like my

son Tanner -but what about the children who's parents are part of

this group who have children with apraxia together with autism, or

CP, or Down syndrome or a list of others including some rare genetic

disorders? Then there are those with apraxia who really only

have " pure " verbal apraxia -no oral apraxia -no hypotonia -nothing

else. So are all apraxics the same?

The more I learn about apraxia -the less I like the label. Let's

treat the symptoms of the child instead of lumping them all together -

our kids are all different, and it's not as simple unfortunately as a

cast. Not yet anyway. So sure use the labels to start on the late

talker / apraxia road for insurance -etc. But as you walk further

down the late talker road you are going to meet lots of us walking

with you and we are all desperately searching for the correct answers

too - how to get our " late talking " children talking... no matter

what their label is.

=====

[Guest guest]

Very good post .

My identical, twin daughters have both been diagnosed as apraxic.

Well, when people hear they are both apraxic, they automatically

think they are at the same level of speech and need the same things.

That is totally wrong. One of my daughters is actually talking well

enough to be understood 60% of the time. She also can carry on

conversations. She can say the Pledge of Allegiance from memory.

She sings songs completely. I think she has more articulation

problems now. The other daughter is understandable probably 20% of

the time. She can't say any of the Pledge of Allegiance. The only

song she can sing completely is the ABC song. She only says some

words out of other songs. She can string together words to make a

sentence, but she doesn't say more than 1 sentence ever.

Anyway, they are individuals and need to be taken as such.

> Hi Bridget!

>

> Hey you are preaching to the choir with me! I been down the late

> talker road for over 7 years now -and it's not the clear path that

> you think. Having a label is a good thing you say? Here's the

> problem.

>

> If your child breaks his wrist almost anywhere in the world he'll

> probably get the same treatment -a cast.

>

> Late talker? How do you access the reason? Go for a speech and

> hearing evaluation -maybe to an OT evaluation too since that's

also

> typically in the IEPs and OT also stimulates speech, you may also

> throw in a neurodevelopmental examination to rule out or confirm

soft

> signs like hypotonia, SI issues, etc. -and if your child does

happen

> to get frustrated and starts withdrawing or hitting others -or

the

> school says he's " manipulative " (happened to a sweet little boy I

> know and love) -you may also top it off with a trip to a pediatric

> neuropsychologist to get a private evaluation to disprove what

other

> label him. So don't forget the school evaluations or the Early

> Intervention evaluations. OK -now the game is -who's " label " is

> correct?

>

> Next question is once you have the label say of broken wrist -what

do

> you do? If your child has a broken wrist and the doctor does want

to

> do something to the wrist - she will tell you the options and the

> pros and the cons of each.

>

> Late talker? It's so silly that you can go to 3 of each in the

same

> profession and you may not only get a different label from each -

but

> top that off with a different therapy treatment. And do you get

the

> pros and cons of all the therapies out there for your child when

you

> take your child labeled with apraxia to an SLP, MD, or OT? Will

they

> tell you the pros and cons of PROMPT, Kaufman, Oral Motor, etc. -

and

> what about all the alternatives like fish oil, or even cranial

> osteopathy done by an MD I've recently heard amazing things about

> from Woods who is a nurse from our group? I could go on

with

> the visual and auditory therapies too.

>

> And most apraxic children do have mild soft signs that should be

> addressed like hypotonia and all, some have oral apraxia too like

my

> son Tanner -but what about the children who's parents are part of

> this group who have children with apraxia together with autism, or

> CP, or Down syndrome or a list of others including some rare

genetic

> disorders? Then there are those with apraxia who really only

> have " pure " verbal apraxia -no oral apraxia -no hypotonia -nothing

> else. So are all apraxics the same?

>

> The more I learn about apraxia -the less I like the label. Let's

> treat the symptoms of the child instead of lumping them all

together -

> our kids are all different, and it's not as simple unfortunately

as a

> cast. Not yet anyway. So sure use the labels to start on the

late

> talker / apraxia road for insurance -etc. But as you walk further

> down the late talker road you are going to meet lots of us walking

> with you and we are all desperately searching for the correct

answers

> too - how to get our " late talking " children talking... no matter

> what their label is.

>

> =====

>

[Guest guest]

Your daughter sounds alot like mine except you knew about apraxia

before I did (my daughter (29 mo.) was just diagnosed as apraxic-like

by an SLP familiar with apraxia last week. I feel alot like you do.

doesn't seem to have any non-verbal problems and it is hard

to think of someone so vibrant and communicative (in her own way) as

having a " neurological " disorder. I actually feel alot better with

the apraxia-like diagnosis then I would with an apraxia diagnosis. I

am very luck where I live (NY) that such a diagnosis qualifies

for 5x week Speech therapy through the early intervention

program.