Help for school age child with apraxia who is now talking

February 1, 2004

This subject just came up - so I wanted to share the following

message so that together we can help this family:

,

I would love for you to post my question and see what happens. I

have read

many stories about children with apraxia and it is like reliving my

own

past. I would encourage parents to receive early intervention- it

made such

a difference for our own child. It is interesting to read the

correlations

with dyslexia and ADHD with siblings and extended family. My nephew

has just

been diagnosed with ADHD and our son who is 8 months younger than

our

daughter with apraxia (he was premature) suffers from dyslexia and

visual

perceptual problems. They are in the same class at school and it is

adding

to my daughters frustrations because while my son still sees many

things

visually different, and writes everything right to left he is able

to read

with much less difficulty than our daughter. He is able to make the

sound

symbol connection and sound out words where this is impossible for

our

daughter. So, any help would be great!

Deletra

dschamle@...

Hello,

My daughter was diagnosed with apraxia when she was about 2.5 years

old. She had been receiving speech services since she was 2 and

continued until she was 5. She learned to talk with sign language

and eventually began adding spoken words but recieved speech

services for 1 hour sessions 3x/week. When she entered school at 5

1/2 she was no longer receiving speech and was almost completely

understandable. There were still a few sounds she had difficulty

making but when we looked back at how far she had come, we thought

everything was great. Unfortunately, she has shown the same trouble

in learning to read as she showed in learning to speak. She is now

in 2nd grade and still reading at a pre-primer level. She shows

some characteristics of dyslexia and dysgraphia and phonics is such

a struggle for her that she is becoming more and more frustrated and

beginning to withdraw socially. She receives speech services at

school for 30 min. 1x/week. (She attends a very small school where

the speech therapist is only there one day a week). I have been

working with her using an Orton-Gillingham reading approach and she

receives the same training with the Title 1 teacher 2x/week but

these services just don't seem to be helping and I don't know what

more to do for her. Do you have any suggestions? Help

Thank you,

Deletra Schamle

dschamle@...

(dschamle at worldnet.att.net)

=====

February 1, 2004

Deletra I have a few suggestions,

Even though your daughter is now in second grade, due to her history

of apraxia and even given the learning disabilities that run in the

family, it may not be that she isn't reading at age level because

she has an underlying learning disability as much as she may need

that extra development time to learn to read just like she needed

that extra developmental time to learn to talk.

Learning to talk and learning to read. I can tell you as a parent

that there are overlaps in how to teach both -and it's important to

remember they are linked. Both require multisensory more so than in

most children because our children may not be utilizing the same

area of the brain as others to learn to read. However -once they

learn -they have the potential to be superior students if you can

maintain a healthy self esteem.

Cured is a statement that comes up here often -and it's all

relevant. If your child truly was apraxic, that is not a condition

that is of yet curable so perhaps the child was never apraxic and

had another impairment of speech. How complex is your child's

ability to express her thoughts? If she has no difficulty

expressing anything she wants no matter how complex and long, no

matter how tired or stressed, and is able to repeat back entire

sentences word for word when asked to -I'd agree that is not an

apraxic -but I wouldn't say that is cured of apraxia because I know

of know such thing and I do know older successful apraxics.

Typically a child will learn to overcome apraxia through strategies,

sometimes enough that it's not detectable to the untrained ear. But

it's important to remember that communication needs become

increasingly complex as the child ages, and school demands go from

extremely simple (kindergarten) to extremely complex within a

relatively short period of time. Once a child breaks down in their

ability to keep up -they are stuck while the rest go on.

What do I mean by more complex? In situations where more complex

language or thoughts is required, or stress or fatigue are involved -

an apraxic child or teen or adult may break down where you can hear

the impairment that they may typically be experienced at hiding.

For example a " cured " five year old apraxic child may be able to

express " Mommy quick -he has a boo boo " but may break down if

trying to express the longer " Mommy come out here quick - ny ran

into the sticker bush in our backyard and it scratched his hand and

his arm and now he is bleeding! " A " cured " apraxic teen may say " He

works at the med center and uses lots of big words when he talks so

I don't know what he meant " and probably wouldn't attempt to say in

public if he knows he will break down " He works at Community

Hospital and speaks using such sophisticated technical medical

language that you would need a dictionary just to understand him

when he orders a cheeseburger at Mickey D's " Apraxics tend to keep

their expressed thoughts shorter -and simpler (immature) than their

peers.

My first question to you is how is your daughter's confidence and

self esteem? My second question which may appear to be unrelated

is -how is your daughter's memory? I don't mean with school work -

just with normal stuff, like when you tell her about something she

wants to do. My third and last questions for now are what does the

school propose to do about your child's reading problems? Is there

a tutor who can work with her outside the school? Are there other

children in her class who also are struggling or does she stand out

as the only one? Is your child close friends with the children in

her class? Is she close with the children in other grades (like

first?)

Was your child 5 or 6 when she started kindergarten? I highly

recommend for children with communication impairments to wait to

send them to kindergarten until 6 (especially those children with

summer birthdays) because even when they appear to be ready

academically at five, if they are not ready in all developmental

areas including maturity -it shows up typically after in the more

academic years after kindergarten. Of course no matter what you did

in the past you can't change -but knowing this may help in making

decisions on what to do next to best help your child be the best she

can be -and rise above!

Please let me know the answer to the above questions when you have a

chance. Below I have some information on a new PBS documentary on

learning to read as well as various archives for suggestions on how

to teach reading to an apraxic child that I've posted due to my son

Tanner, some which may help your daughter too. I would start from

the beginning from your daughter to give her a solid base to build

on -and not worry about using books that are viewed as books

for " babies " Right now probably the best thing to do is find ways

to build up your daughter's confidence. Let her understand and know

that she has the potential due to her early way of learning to read

and the new unexplored pathways she developed in her brain -to

become an even greater student than the rest -she does has the power

to rise above. Believe it -and help her believe it.

~~~~~~~~~~~~~~~~~~~~~

" Statistically, more American children suffer long-term life-harm

from the process of learning to read than from parental abuse,

accidents, and all other childhood diseases and disorders combined.

In purely economic terms, reading related difficulties cost our

nation more than the war on terrorism, crime, and drugs combined.

" We need to reconceptualize what it means to learn to read and who's

responsible for its success if we're going to deal with the

problem. " - Dr. Grover Whitehurst, Director Institute of Education

Sciences, Assistant Secretary of Education, U.S. Department of

Education (9-10-03 Children of the Code interview).

The target date for the national broadcast of the Children of the

Code PBS series is September 2004. A companion book and the expanded

DVD series are slated for release in early 2005. The Children of the

Code team currently gives presentations and workshops to parents and

teachers. "

http://www.childrenofthecode.org/cotcintro.htm

My 7 year old son Tanner is now in first grade and reading all kinds

of books and even newspapers, mainly due to a solid base of both

traditional and multisensory therapy. Tanner's page is

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

Traditional ways to teach reading -which some of my ideas are based

from? There are so many out there now. Carol just posted about

LiPS, which is just one. Here is a great webpage about that and a

few others worth exploring. (In fact -print out this page which is

reprinted with permission and written by

Curtis W. McIntyre, Ph.D. and Joyce S. Pickering, LSH/CCC, MA,

editors, 1995. International Multisensory Structured Language

Education Council (IMSLEC)

http://www.ldonline.org/ld_indepth/reading/mssl_methods.html

I can tell you we always kept Tanner laughing -and always used

multisensory. We would sit at dinner and I would say " Let's play a

game. I'm going to say a word and everyone change one letter to

make another word " This one is great to work on with a bunch of

letters (you can use the fridge ones -they are pretty cheap and then

you can play in the car) so you can pass the " word " around. Took

Tanner awhile to want to play. For the longest time he just sat and

listened to/watched us -which was fine with me. I wasn't sure if he

got the concept of rhyming -which to me is a fun way to learn to

read -even though in academic theory it's not always the best way to

learn...but I then found that by taking Tanner to Seussville at

Universal and reading all the Dr. Seuss books took off. My

recommendation -Hop On Pop is an awesome book for children with

speech problems -and was Tanner's favorite. Actually if your child

isn't reading at all yet -also get a book called Hug -- by Jez

Alborough. Almost every page has one word on it... " Hug " which can

be said in all different ways with different voices/meanings -it's

an awesome book for a number of reasons.

From Amazon

" How can it be that a book with only one word--hug--repeated

throughout, can be so good? The proof is in the pudding (or the

wilds of Africa) in Jez Alborough's picture book Hug, a delightful

mini odyssey of a baby chimpanzee on the hunt for his mum and a

cuddle.

Our little friend wanders through the trees, witnessing many other

animals from chameleons to giraffes as they snuggle together. " Hug, "

he says, happily, at first, but then with growing despair as he sees

there are no hugs for him. The story is told purely by the

expression on the little chimp's face as his hopes are built up and

dashed again until eventually, with a huge smile, he finds his mum

and reaps the reward.

Hug is a clever, unusual book that portrays the art of children's

illustration at its very best: a story brought to life with the

stroke of a brush through facial expressions and body language that

children will immediately understand. "

Tanner seemed to like to turn the pages of the book Hug and " read "

to us. After awhile -he got into changing his voice. At first he

just read the word the same way throughout. Like us he

was " reading " (even though there are only a few different words in

the whole book) and of course we made a big deal about " how

advanced " Tanner was that he could " read an entire book! " and " Look

how big of a book it is! " Hug was not meant as a book for a six

year old like Tanner which is how old he was when I found it for

him -it's meant for babies. I didn't care. Like most other kids

we were not working on reading prior to Kindergarten -we were

working on speech -and outside of that I wanted him to be a kid, and

there wasn't enough time in the day for all of it. So reading based

on my research could take a back burner. (there are studies on this

I've posted in the archives)

I bought a " baby " book for Tanner because in my mind I needed books

for him that were so easy they would raise his confidence. Add

confidence to the list of most important things you can give your

child. Right after reading his " confidence " books -he's ready to

learn -he's ready for the " hard " books.

After having Tanner read Hug alone -together we used to

read " harder " books -at first back then -Dr. Suess. Back then -Hug

was his warm up. I would both let Tanner sound out -and I would

read to him and let him read back after me (think modeling when we

teach them to talk) Then Dr. Suess was his warm up -and now Danny

and the Dinosaur is his warm up. His warm up of today was

his " hard " book of yesterday. I believe that children like Tanner

need warm up time to get their motor planning going.

Hard words are just words with silent letters (they are learning to

talk Tanner -they want to be there but don't make any sound yet) or

long words (let's break this up to little words) and we use the same

visual or auditory cues for long words in reading we use for long

words in speech -clapping -fingers etc. So next time your child is

tyring to break down " snug " don't break it down to s -n -u- g. Try

this and let me know how it goes. Break it into " Sn " " u " " g " and

use three fingers to cue for each sound. Point to the Sn and cover

the ug -and say " sn " and put up one finger. Then cover the sn and g

so she only sees the " u " and put up two fingers and say 'U " and then

do the same for the g (cover the rest) and use three fingers and

say " g " At first each word is like pulling teeth -but then it

clicks and they just click. Again -think warm up.

I also noticed with reading that if I have him concentrate on

reading " with feeling " voice inflections, and we laugh and have fun

with it -he reads much faster and more fluent than ever! I of course

go crazy saying " Wow you can be an actor you read so well! " or I

laugh because he reads it so funny -(cute) I think it's tricking his

brain into using another area -kind of like the singing vs. talking

thing.

" For Tanner...if I listened to all the professionals outside of

knowledgeable ones like Dr. Agin:

I would have believed he is " just " a late talker and would not have

pushed for evaluations/EI

I would have believed all that I read at the only two websites for

apraxia when Tanner was first diagnosed. Which meant -no such thing

as oral apraxia, low tone/hypotonia? What's that and no

relationship. no way to diagnose apraxia in a child younger than

three. etc. etc.

I would have believed that Tanner may never talk because " it

depends "

I would have believed that Tanner would still be in a special ed

self contained class.

And I wouldn't have learned that what helped my son Tanner -also

helps so many others. You guys have no idea -no idea how criticized

I was by one parent out there who runs another apraxia group because

of my beliefs. What beliefs are they -all those I know in my heart

are good for our children.

Multisensory approaches to teaching and therapy like schools for the

hearing impaired (Association Method School)

EFAs

The importance of neurodevelopmental medical exams for a number of

reasons

Again you can read how I covered all this in more in my first posts

just a day to a week after Tanner was diagnosed. I've posted a few

here

/message/24782

So gray matter...don't have enough yet on it -still studying. I did

since find out about what was tried for autism....I again somehow

suspect that the EFAs have a play here too. After all -most of the

gray matter is comprised of it. "

I see the same thing with Tanner! He seems to be able to read

harder words at times than the easy ones! Makes no sense and I

point that out in an archive below. Like yes -he'll read a word

like Mississippi easily -and then pause for the word " the " ! But

then once I get him to read at least 2 pages from a book he knows

well like Danny and the Dinosaur -he's in the groove for the day.

It's like he just needs to get that brain switch turned on -then

it's on and he's more advanced. But if I don't warm him up he can

appear like he can't read very well at all. Of course for easy

books he doesn't need a warm up any longer -they are the warm up.

I just had a great conversation with Dr. Rosenthal the other day.

All of you may want to start trying to put his research to practice.

Read this and believe it's true about your speech impaired child:

A child with any disability will compensate for this disability by

being stronger in other areas than normal. Due to this -if given

the chance, multisensory exposure, and belief in them -children that

have expressive speech problems may be better at reading and writing

than normal.

I know that is not what research shows....yet. But as those that

care for these children -believe it. It's in my opinion wiser to

believe this -than for one to assume they can judge a child's IQ and

receptive ability and memory by using verbal based means...which

happens all the time.

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

And besides -Dr. Rosenthal agrees with that point and thinks this

needs to be researched. Any graduate students out there I'll tell

you more about what he said. Email me at lisa@... lisa at

cherab.org

" For ethical reasons, the Oak School experiment only focused on

favorable or positive expectations and their impact on intellectual

competence, but it is reasonable to infer that unfavorable

expectations could also lead to a corresponding decrease in

performance. Often, these negative expectations are based on

appearences and other factors that have little to do with

actual intellectual ability "

http://www.facultydirectory.ucr.edu/cgi-bin/pub/public_individual.pl?

faculty=534

Here is more from an archive:

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

Date: Wed Nov 5, 2003 8:36 pm

Subject: Re: reading

I agree with Gin on finding reading is helping Tanner with more

complex speech. Not only that -I agree that multisensory is the way

to go -and do not underestimate our children -they may not just make

it -they may excel above " normal " kids if given the chance (and the

belief in them) And for good reason.

My theory is that because our children don't learn to talk like

everyone else -that in contrast to the popular experience that most

speech impaired children will have learning disabilities -if treated

correctly -our kids may actually in many ways be even better

students than most. As a toy inventor -I'm aware of the basics of

what most kids like -or are like.

There are a few reasons I feel this way -don't have time to go into

all of them now. But for one -most of us have found our children

have these die hard memories! Not a normal memory for a " normal "

child -most kids you can get to forget a point by bringing up

something else that interests them -not many of the children in this

group! (of course you can never say " always " -just more often than

not. Just like the trouble blowing the nose thing that I first

brought up -this is yet another observation you will not read about

in books...yet) When Tanner learns his spelling words -he not only

knows how to spell even hard words -he tells me the word on the list

(of ten each week) and then spells it -like his memory is a picture

he can just look at.

Perhaps -due to using a different pathway and developing such

pathway -they have an edge we don't yet understand. I posted awhile

back that I found Tanner does best for the day if I have him read a

few pages each morning before school -like a warm up. He may start

out sounding each word -then once he is one a roll -he's in the

groove. Just like an apraxic child with words -with reading it's

strange too. Most kids will just read 3 letter words after awhile.

Tanner will whiz through difficult words at times like oxygen -and

have to sound out a word like " pull " Not every time -but enough to

make me take notice. As always -apraxia doesn't make sense in

the " norm " -so don't look at our kids and compare. And if you do -

notice just as well how they excel over others.

I again believe it most important to expose our children to

multisensory ways of learning, and keeping their self esteem high.

This means not exposing these kids to verbal based IQ or receptive

language testing!

Here are some notes on Tanner from an archived message. (again

Tanner is a straight A student in a mainstreamed accelerated

academics first grade class. He is social, has lots of friends -

does not get teased for the way he talks. Other children understand

he has a (now mild for the most part) speech impairment, (more

severe with more complex thoughts) but that he is very bright -and a

fun kid. Tanner is on the chess club, soccer team, and he is a cub

scout. No more therapy outside of speech -and of course

ProEFA/ProEPA and carnosine/carn-aware (the carnosine/carn-aware we

do on and off -the " magic fish oil " -all the time and don't miss a

day...He's doing that well in school -who knows, maybe it is

the " magic fish oil " . funny update -Tanner's teacher asked where she

could buy the fish oil we use for her own family (and self) after

hearing me talk to some other parents about it who also want to know

what we use. Tanner's doing better than some of their children -and

I told them how it helps me with my memory.)

" Here are some of the ways I help Tanner at home with his school

word. I'm sure some of the following examples will apply to any

child -even those who don't have any learning disabilities or speech

problems. It's just that it's the whole picture. Freeze under

pressure -break down the longer the utterance -responds to

multisensory techniques...etc.

( just off the top and not in any order )

Tanner's first grade class was given a " mad minute " math test where

they were given 2 minutes to answer 29 math questions both

subtraction and addition -stuff ranging from 7 + 7 to 11 - 4.

Tanner is a whiz at math -I believe from the Nintendo games and

other computer games such as that they are educational he's learned

much like that in a fun way. But...the first time he was given the

test he mixed up the subtraction and addition signs which he never

does -and got even some easy math questions wrong. When he came

home I just said to him in a really fun animated way (since this was

the first sign of any problem at all) " Tanner -they time you

because we live in Florida now near the Nickelodeon Studios in

Orlando -and just in case we go on Family Double Dare you are going

to have to answer all these questions fast or we'll all

get " SLIMED! " (I said wrinkling up my nose and laughing) BUT -if

you get them all right we'll win really cool prizes! Either way

it's just for fun! " Well the next day the test was given again to

the class and Tanner not only got 100% but was the first one

finished!

Tanner gets 100% on spelling each week, no matter how difficult the

spelling words are. I found the best way to teach him the words is

to use multisensory fun ways. This is just two of them -I'll write

the letters on his back as he says them for each word...but if he

says the wrong letter I don't write it....play game show where we

take turns being the contestant and game show host -jumping up and

down etc. Either Glenn, Dakota or I are the ones who get the

answers spelled wrong (we change our voices and pretend we are

someone else. We'll sound out the word wrong and spell it wrong. I

try to think of how a speech impaired child will say the word and

spell it that way) and Tanner is always the one that is the

contestant to spell it right. If Tanner is the game show host -one

of us will get it right -but the first one will get it wrong.

Tanner always laughs and has to correct us. For the one that won -

he'll have to say what prize they won. We also do " teacher " where

I'm the student and he teaches me the words -warns me about the

silent letters -etc.

I found that even though Tanner will spell each word right if given

one at a time -if he has to put the words in a sentence -he broke

down and spelled words he knows wrong. Once I told him to think of

each word separate - " think game show " -he spells them right.

When Tanner is reading long more complex words such as for example

last night -circulatory (he's learning about blood cells now) he

needs a cue to break it down. For example on his own last night

when I said " Just break it down Tanner and think of it as four

words " Tanner picked up a Jimmy Neutron Mc's toy and for each

syllable he said -as he said it -he turned the toy's head.

Sometimes his apraxia gets in the way of reading certain words at

first. He'll read the word and say the last sound wrong -or the

middle sound wrong. I'll correct him and point to the missed

letter. He'll repeat the word and hesitate at the letter in

question -visibly trying hard to say it right -but again say it

wrong. We'll go over this a few times until I clap my hands -or

give him some other cue to break it down. Once he says it right -

I'll have him repeat it over and over at least three times. I'll

then say the word about ten times over and over until he says " All

right already! " and then we'll move on. If when we get to the word

again he hesitates -I just have to clap or give a cue and he

says " Oh yeah " and says it right very quickly. Then he just gets it

on his own.

Anyone else? "

Lynn -as far as how do you teach a nonverbal child to read...I would

do all the same as above. You may want to read up on Helen Keller.

My son was schooled in preschool in an oral based school for the

hearing impaired/deaf. You don't have to talk to be able to read.

" I knew then that 'w-a-t-e-r' meant the wonderful cool something

that was

flowing over my hand. That living word awakened my soul, gave it

light, hope,

joy, set it free! "

Helen Keller 1880-1968

American writer and lecturer

http://www.theglassceiling.com/biographies/bio20.htm

=====

February 3, 2004

I found this very interesting my oldest boy (8yo) wrote entirely right to left -

starting at the right hand side of the page and going to the left, writing every

singly letter inversed. They said it wasn't dyslexia because he got it wrong

100% of the time and dyslexics get it right 1/2 of the time. He is doing very

well in reading and is above grade level. My middle boy (6 yo) had severe

speech problems (possibly apraxia), but no difficulty with writing and is having

a lot of problems with reading. He started receiving speech at 3yo and is very

understandable now. My youngest (daughter 4yo) has been diagnosed with apraxia

and more severe speech problems than anyone has ever seen with a child that

doesn't have additional complications. She started receiving speech before 1

year and has been on 5x/week for the past 2 years - she has improved, but is

still virtually impossible to understand without known context.

--

[ ] Help for school age child with apraxia who is

now talking