Re: yet another question/long

[Guest guest]

Hi Jill!

5x a week 1/1 therapy through your school! Written in the IEP and

they are actually following through! Are you one of the super

hero 'Incredibles' or what? Come on -your secret identity is safe

with us!

One question however -when all say he does not require any OT -does

that include private evals as well as school? OTs work great with SLPs. Motion

helps stimulate speech.

Children with apraxia -even when it affects the body in some ways

can still pass developmental milestones on time. Apraxia in the

body does not always present obvious, nor consistant. That's all

par for the course. A good sign of apraxia is when you and others

say " Now that doesn't make sense! How come he can do [X] which is

so difficult, and yet he can't always do [Y]! " Or he can do

something one day and then the next day he can't. I always say if a

child that is three years old is expected to do ABC -our kids can do

ACDE even -going above what is expected -but B =sometimes they can

do it -sometimes they can't.

Example: My son Tanner at three could throw a ball overhand like he

was going to be a pro player or something -but try to get him to

throw it underhand and he was completely uncoordinated. Or he could climb

to the top of the monkey bars easily, but was awkward climbing the stairs to the

slide.

Stuff like that. Sometimes he could put his socks on himself -

sometimes he didn't know how.

Many apraxic children have 'mild' low tone in the body -that co

exists with the apraxia. Weakness is different than motor planning -

and it presents different. They can either do it on command -just

not that long or well -or they can't do it at all.

Tanner had hypotonia -not that we knew that way back when -we too

knew that he could walk, run and play -but he got tired quick and

wanted to be picked up, wanted to be in a stroller. In fact we

needed to bring along a stroller long after my other friend's kids

the same age needed one. If I gosh forbid forgot the stroller, Tanner -after a

short time he would be sitting on the floor of the mall crying with

his arms in the air for me to pick him up. Children like ours can

be viewed as spoiled -but is it being spoiled when it hurts -and you

can't tell anyone. It was so important for Tanner's self esteem to

know that there were things that were just beyond his control. He'd

push himself until his " legs hurt " We know that now. As Tanner got

older and was able to tell us, we found out that when his legs hurt

it felt like " burning " and as we were doing fun stuff and pushed him

to walk " just a bit more Tanner -just up to that tree " ... " Mommy I

can't, they hurt " with tears running down his face, grabbing his

legs. We do push him -but being aware he has his limits it keeps us

on the side of the thin line of pushing to help make him stronger -

and not the side of being insensitive and destructive to his self

esteem. Without knowledge of what we are dealing with -it's harder

to know. Another reason for the neuroMD.

If you read the posts I just sent out -we too thought Tanner 'just'

had verbal apraxia or " pure apraxia " when he was three. It is

easier to know it's not just that as they get older. Tanner had

years of OT during preschool and up to kindergarten -to be able to

hold a pencil correctly to write and draw. Tanner's hand used to

get tired writing and drawing -and just like his legs he would hug

his hands to his body with tears in his eyes. Now due to years of

OT, and gentle pushing -Tanner in second grade just like the other

kids can write as much as the others. And only I know that when we

go to Disney or Universal where it's walking and running all day

from ride to ride -Tanner can't go all day, only for hours (which we

are up to now!) So what if he can't walk as fast as long as the

rest. Tanner's overcome this aspect too, and we'll continue to help

him to achieve the best he can.

Much isn't expected of preschool children, and the average apraxic

child has average to above average intelligence -and knows what they

are supposed to do. They push themselves to keep up-that's what my

son and others in our group have done. Problem is that as they get

older and more is expected of them -they can break down. If issues

are there -it's best to address them during these preschool years

when therapy is just playing with another " friend "

There is so much more a neuroMD exam is good for. Have you read The

Late Talker book I co authored with my son Tanner's

neurodevelopmental MD Dr. Marilyn Agin? If apraxia is expected -a

referral to a knowledgeable neuroMD is recommended for various

reasons ranging from all the appropriate diagnosis, therapies,

advocacy for school (not that you need that!) and insurance,

and...below is a new member archive that sums up a bit more.

Knowledge is power that helps you best help your child.

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)

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)

=====

[Guest guest]

--thank you so much for such an informative and thorough reply.

Let me clear up...I am not an " incredible " what I meant to convey

was that he gets ST 5xwk total ( 3x in the school written in the IEP

and insurance is covering the remaining 2xwk which is actually

pretty incredible!). To answer your question, no, he has not been

evaluated privately by an OT. He was first evaluated by an early

intervention OT as part of the overall assessmeht process and then

subsequently by a school OT. I imagine both of those screenings

were brief but I was only present for the first one and that was

before the apraxia diagnoses. He does do most physical activities

consistently well but something you wrote struck a chord with me.

He often complains that his " bones " hurt him in his legs and does

have difficulty keeping up with his 4 year old playmate on long

walks. I just assumed he was not quite as athletic as his friend

who is incidentally extremely athletic. The one thing he does which

seems to " not make sense " is that he'll say " watch this mommy I'm

hopping on one leg " but actually he's bent over with one foot in the

air -- when I have seen him jump on one leg so I know he can do it.

Also we've been practicing writing his letters for kindergarten

preparation and he quickly complains his fingers hurt from holding

the pencil. I just thought he wasn't used to it.

OK so it looks like I'm off the find a pediatric neurologist

that participates in our insurance (yet another insurance battle I'm

sure)---at least we already met our deductible for this year!!

...thank you so much for this group you really help a lot

of families which I'm sure you already know but don't probably hear

it enough!!!

Take care...Jill (mom of Jordan 4.5)

>

> Hi Jill!

>

> 5x a week 1/1 therapy through your school! Written in the IEP and

> they are actually following through! Are you one of the super

> hero 'Incredibles' or what? Come on -your secret identity is safe

> with us!

>

> One question however -when all say he does not require any OT -

does

> that include private evals as well as school? OTs work great with

SLPs. Motion helps stimulate speech.

>

> Children with apraxia -even when it affects the body in some ways

> can still pass developmental milestones on time. Apraxia in the

> body does not always present obvious, nor consistant. That's all

> par for the course. A good sign of apraxia is when you and others

> say " Now that doesn't make sense! How come he can do [X] which is

> so difficult, and yet he can't always do [Y]! " Or he can do

> something one day and then the next day he can't. I always say if

a

> child that is three years old is expected to do ABC -our kids can

do

> ACDE even -going above what is expected -but B =sometimes they can

> do it -sometimes they can't.

>

> Example: My son Tanner at three could throw a ball overhand like

he

> was going to be a pro player or something -but try to get him to

> throw it underhand and he was completely uncoordinated. Or he

could climb

> to the top of the monkey bars easily, but was awkward climbing the

stairs to the slide.

> Stuff like that. Sometimes he could put his socks on himself -

> sometimes he didn't know how.

>

> Many apraxic children have 'mild' low tone in the body -that co

> exists with the apraxia. Weakness is different than motor

planning -

> and it presents different. They can either do it on command -just

> not that long or well -or they can't do it at all.

>

> Tanner had hypotonia -not that we knew that way back when -we too

> knew that he could walk, run and play -but he got tired quick and

> wanted to be picked up, wanted to be in a stroller. In fact we

> needed to bring along a stroller long after my other friend's kids

> the same age needed one. If I gosh forbid forgot the stroller,

Tanner -after a

> short time he would be sitting on the floor of the mall crying

with

> his arms in the air for me to pick him up. Children like ours can

> be viewed as spoiled -but is it being spoiled when it hurts -and

you

> can't tell anyone. It was so important for Tanner's self esteem

to

> know that there were things that were just beyond his control.

He'd

> push himself until his " legs hurt " We know that now. As Tanner

got

> older and was able to tell us, we found out that when his legs

hurt

> it felt like " burning " and as we were doing fun stuff and pushed

him

> to walk " just a bit more Tanner -just up to that tree " ... " Mommy I

> can't, they hurt " with tears running down his face, grabbing his

> legs. We do push him -but being aware he has his limits it keeps

us

> on the side of the thin line of pushing to help make him stronger -

> and not the side of being insensitive and destructive to his self

> esteem. Without knowledge of what we are dealing with -it's

harder

> to know. Another reason for the neuroMD.

>

> If you read the posts I just sent out -we too thought

Tanner 'just'

> had verbal apraxia or " pure apraxia " when he was three. It is

> easier to know it's not just that as they get older. Tanner had

> years of OT during preschool and up to kindergarten -to be able to

> hold a pencil correctly to write and draw. Tanner's hand used to

> get tired writing and drawing -and just like his legs he would hug

> his hands to his body with tears in his eyes. Now due to years of

> OT, and gentle pushing -Tanner in second grade just like the other

> kids can write as much as the others. And only I know that when

we

> go to Disney or Universal where it's walking and running all day

> from ride to ride -Tanner can't go all day, only for hours (which

we

> are up to now!) So what if he can't walk as fast as long as the

> rest. Tanner's overcome this aspect too, and we'll continue to

help

> him to achieve the best he can.

>

> Much isn't expected of preschool children, and the average apraxic

> child has average to above average intelligence -and knows what

they

> are supposed to do. They push themselves to keep up-that's what

my

> son and others in our group have done. Problem is that as they

get

> older and more is expected of them -they can break down. If

issues

> are there -it's best to address them during these preschool years

> when therapy is just playing with another " friend "

>

> There is so much more a neuroMD exam is good for. Have you read

The

> Late Talker book I co authored with my son Tanner's

> neurodevelopmental MD Dr. Marilyn Agin? If apraxia is expected -a

> referral to a knowledgeable neuroMD is recommended for various

> reasons ranging from all the appropriate diagnosis, therapies,

> advocacy for school (not that you need that!) and insurance,

> and...below is a new member archive that sums up a bit more.

> Knowledge is power that helps you best help your child.

>

> 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/parentfriendlysoftsi

gns.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)

>

> 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)

>

> =====

>

[Guest guest]

hi,

about the neurologist, my district told me to do that to get more services.

otherwise its not necessary. you got 5x a week speech that's great!!! you got

the services through your ped i think that would be enough.

chris

[Guest guest]

,

Thank you for this long response. You totally made a light bulb go

off in my head with this. My son has what I've been told

is " low tone " by two different therapists. I always thought of it

in his face, which still retains much of its baby chubbiness even

now that he is really starting to talk, but the OT we saw last week

said he has it even in his arms and legs.

When you said about the stroller, that just clicked with me.

doesn't like to walk for long stretches either, and it has

been really frustrating me. I kept thinking it was a sensory thing

somehow, but it didn't occur to me about the low tone issue...now it

totally makes sense. Because he too flops down wherever he is if I

try to make him walk when he doesn't want to.

I'm totally lopsided on my left side from carrying him on that hip,

but I feel loads better about it after reading this. Thank you!

Amy

mom to , 33 mos, verbal apraxia, sensory issues