Re: overwhelmed and frustrated :-(

[Guest guest]

Hi Jenna.

I'm sorry you're going through this difficult time before the diagnosis. I

don't know if it's any comfort to know that many of us have had a year or more

of waitingand waiting and hoping and waiting some more for appointments and

disappointments with some professionals medical or SLPs who seemed to choose a

very limitted lens to evaluate our children> Others were great and still

couldn't really say for sure so the diagnosing process is very up and down.

A PPO plan is definitely needed for children who are going through this kind of

an assessment and treatment. It sounds like you've got great support from Early

Intervention and that's amazing, many of us have not been so lucky. It's never

all smooth and certain, uncertainty is at all steps, and even the best of

doctors can only guess based on existent symptoms. As our children grow, they

will surprise and even amaze us no matter what the initial diagnosis said.

I find that the most important thing to do is keep an open mind, open not just

to accepting what might be amiss neurologically with our children, but also in

regards to treatment. The best advise I can give anyone is to really read

everything and educate themselves about the complexities of metabolic disorders

and neurological functioning and do not be afraid to look and even step outside

the box. You said you were a nurse and that may give you a more traditional

starting point when it comes to health care but many of us have found that we

cannot trust our doctors to know it all and must be actively seeking information

from a variety of sources and collaborating with the medical professionals.

You will find that due to the fact that no matter what the diagnosis ends up

being, no one knows exactly what is the true potential of a child or what is in

his little brain, and research and clinical practice are very far apart often

times so it is up to us parents to try to bridge the gaps, because we have the

highest stakes and we don't really care where the answers and solutions come

from as long as they can help our children progress. I find that developmental

delays, regardless of reason puts many of us closer to the

alternative/biomedical medical field because they are currently leading the

research in neurological functioning.

Whether your child is on the spectrum or not, or has apraxia or not, please be

sure you investigate any possible malabsorptions (which may or may not have

digestive/weight signs) as the gut brain/immune system connection is undeniable.

But many doctors still don't really go there and just look at physical symptoms

when it comes to malabsorption and unfortunately the neurological aspects are

often missed. They may or may not be there, but you may want to rule them out.

The fish oil is certainly an alternative intervention and generally helps after

a few days or weeks, months others, others need to address other issues first

--like malabsorption, but in most cases the fish oil will show some benefits as

it is a very powerful antiinflamatory, and even if there are no overt fatty acid

malabsorptions or deficiencies, we can all use more Omega 3. So give it some

time, read, research, observe your child'a behaviors, speech, receptive language

skills, keep notes and I suggest you write an introductory letter you can

perfect as you go along to introduce your child and your concerns about his

development to the specialists who will be seeing him.

I find that forms don't always allow you to fully explain your concerns and the

child's strengths and weaknesses, so this letter has been a saver for us, you

should also try to send it to the doctor ahead of time so that the bulk of the

visit is spent evaluating the child, not getting information from the parents

that could and should have been obtained prior to the visit. Plus this way you

get to rehearse it well, and add to it with each evaluation, each thing you

learn and see how it applies to your child etc. And it really is a huge time

saver even though some doctors do not bother to read it and still ask you those

questions but you can quickly summarize and point to the letter where they can

get it later as they write up their report so they don't have to write

everything you say down.

The letter usually covers : eating, sleeping, speech, behavior, socialization

patterns etc. These are just some of the things that should be included with

separate headings as well as any physical illnesses or concerns, problems

achieving milestones such as walking, throwing a ball, catching it, does he fall

down a lot and is he kind of clumsy etc. as well as all other evaluations and

reports from Early Intervention. Pretty much what you've seen ion the various

forms, but here you get to prioritize the concerns and emphasize what seems most

important to your child' s situation, and what is different and unique and not

captured by the forms.

And then take a deep breath... it can be an uphill battle and it usually ids for

most of us. Between finding the right professionals and specialists to

evaluate, diagnose and treat our children and then finding the means to pay for

it through insurance or school districts, it is definitely a challenge. All

these aspects are enough to make one go mad, but we have to just keep our calm

and our wits to be able to make the best decisions we can for our children.

Good luck with everything!

_Elena--mom to Ziana --age 3.10--severely apraxic, but otherwise a happy healthy

child and progressing steadily now that apropriate speech

therapy/diet/supplements have all been implemented.

imcaligal <imcaligal@...> wrote: A couple of weeks ago I introduced myself

and my son, Larsyn. This journey is relatively

new to us. He is 26 months old and has been in EI since 19 months for severe

speech

delay, sensory issues and hypotonia. He has not been diagnosed (as of yet) with

Autism or

apraxia. He has no true words, just some babbling and about 5 approximations. He

doesn't seem to have issues with receptive speech. His SLP doesn't feel

comfortable

diagnosing him with apraxia yet, because of his other issues. But from reading

The Late

Talker and lurking on this board, I truly believe he is apraxic ( and possibly

somewhere on

the autism spectrum).

His EI ( Regional Center of Orange County) has been awesome so far. Everything I

have

asked for he has gotten. Speech 3x's week/ 2 hrs day (group-he was in individual

but we

changed him before I knew about Apraxia) and 2 hours of OT/week. He will be

transitioning back over to 4x/week/30 min individual speech sometime next month.

His

OT works with his sensory issues and oral motor (he is a major drooler, can't

pucker, blow

or lick top of lips, always has mouth open). Two weeks ago I caved in and

started him on

NN Omega 3/6/9 liquid (1/4 tsp). Since he was 6 months old I gave him a vegan

omega 3

(we are strict vegetarians, so giving him fish oil has been traumatic for me!).

So far I don't

see too much of a difference.

I finally got an appt with a pediatric neurologist (Oct 23rd!) and luckily got

an appt this

Tuesday with a developmental pediatrician (at 4OCKIDS which specializes in

Autism ).

I am fighting with my HMO and medical group over that appt which will cost

$500-1500! I

am going to appeal their denial. So #$%@* Frustrating!!! Next year we will

switch to a PPO

so hopefully we won't have this problem.

Anyways, my question is what should I expect from the developmental ped. appt.

What

questions should I ask? What medical tests or labs should I ask about. His

regular ped.

talked about genetic testing, but she wanted to wait until the neuro and

developmental

ped assessed him.

My personal back ground is in Trauma/Surgical ICU Nursing (was a nurse manager,

but

quit almost 5 years ago to stay home with my boys). I also am a certified Public

Health

Nurse. Even though I am not a total lay person, I feel at loss when it comes to

all of this!

I don't really care what the diagnosis is, I just want to do what is right for

him and get the

services he needs.

Reading this board is the only time I really don't feel alone in this journey,

so THANK YOU!

-Jenna RN,BSN,PHN

------------------------------------

[Guest guest]

Jenna I just answered a similar question to yours last week which I

have below. Just a few questions. What makes you lean towards the

dual diagnosis of apraxia and autism? (what symptoms for autism?)

What does the SLP mean that she doesn't want to diagnose apraxia due

to the " other issues " What other issues?

Some experts say around 50% of those with autism have apraxia while

most with apraxia don't have autism however the confusion is that

some still believe due to classic and dated information on apraxia

that it's just a speech impairment (traditionalists view) while we've

seen in reality today most apraxic children have other co

existing " soft signs " such as sensory issues and/or hypotonia.

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

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

Here's information on apraxia from a parent/neurodevelopmental

pediatrician/SLP view and keep in mind even though Dr Agin for

example lists various symptoms; not all apraxic children will have

all the symptoms. While my son Tanner had both oral and verbal

apraxia, hypotonia and sensory integration dysfunction -he almost

never drooled -even while teething (!) yet Tanner had various oral

motor problems -including oral motor weakness which was visible in

photos even and oral apraxia in which he couldn't move his tongue or

even smile etc. on command -and sensory mouth stuffing issues..but no

drooling (that was my other son!)

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

I'm just really asking because 1. you live in California where

historically even if your child is " just " apraxic he will get the PDD

diagnosis because he's got the sensory and the speech going on...but

apraxia is not autism and PDD just confuses the therapy that's

appropriate. 2. the place you are taking your child www.ockids.org

only talks about autism and ADHD -do they recognize apraxia as well?

About the fish oil: you've been using the equivalent of one capsule

of ProEFA a day for 2 weeks. Most of us saw the first surges in a

day to 3 weeks almost across the board and for years most of us just

used the one capsule to start. Of course today most move up the

dosage a bit quicker and are seeing even greater accelerations. Have

you noticed any difference in mouth movements -babble -anything at

all? If you notice even small signs let me know as that's a sign it

will work and you'll see a surge in about one more week. If nothing

at all -fish oil may not be the answer as it works for almost all -

not all.

http://www.cherab.org/information/historyEFA.html

Sometimes being a professional in the medical field or being a speech

language pathologist and having a child with apraxia is even

harder ...to start...because other professionals forget that you're a

parent first and human -and go through the emotions and need the

support just like everyone else. Not that I know this (because I

am " just " a parent) but I've been told by SLPs, OTs, PTs, MDs...and

not all SLPs even know how to work with an apraxic child...speaking

of which back to your son's SLP- please let me know what she meant

by " other issues "

PS -once up to speed -nobody will be able to mess with you!!!

Here's the archive about what to expect which I pulled from The Late

Talker. You'll probably want to take your copy with you to help

secure the therapies and get coverage by using the sample letter.

Re: Meeting w/ developmental pediatrician tomorrow

Not sure if you have The Late Talker book but since my one co author

is a neurodevelopmental pediatrician this is so well covered in the

book I can't post it all here. If you don't have the book I'd

recommend trying to find it before the appointment as there are sample

letters in there that will help for securing therapy through EI for

school or for insurance (coding etc.)

Here's a clip from The Late Talker -St 's Press 2003 (get the

paperback version as it's updated):

" VISITING THE DOCTOR

What can you expect when you take your son or daughter to one of

these specialists? Each begins by obtaining a birth and medical

history, looking for clues to a possible neurological cause for your

child's developmental disorder. Some physicians may ask you to fill

out a questionnaire; others may obtain an oral history. Commonly,

there are questions about your pregnancy: Was it full-term? Did you

take any medications or drugs? Did you consume alcohol? The doctor

will want to know if your child has had frequent ear infections, a

serious illness such as meningitis, or if there have been delays

or " abnormalities " in his sitting, crawling, walking, speech, social

or self-help skills. Have there been any regressions? As speech and

language disorders may run in families he will query if other

relatives have had speech and language delays, dyslexia, or other

learning disabilities.

More clues towards a diagnosis come from the physical and neurologic

examination. Your doctor should measure your child's height, weight,

and head circumference. A small head (microcephaly) compared to other

children of the same age, or a large head (macrocephaly) can be

significant. Microcephaly may be correlated with brain dysfunction.

Macrocephaly usually warrants an MRI or CT scan to rule out anything

serious. With either micro or macrocephaly, the doctor needs to check

the parents to see if small heads or big heads run in the family. If

they do, this would be an inherited trait and not cause for concern.

There are many syndromes in which head size, certain facial features

and certain skin markings anywhere on the body (neurocutaneous

stigmata) are elements. The neurodevelopmental specialist examines

overall muscle tone because benign congenital hypotonia (BCH) may be

seen in children with apraxia. Muscle strength and coordination are

best evaluated " dynamically, " that is watching the child in action—

performing activities like lifting his arms above his head, throwing

a ball, walking on heels and toes, running, and walking up and down

stairs.

To be complete, the doctor also checks deep tendon reflexes (DTRs),

such as the knee jerk. (Most children with BCH have essentially

normal DTRs). The doctor evaluates fine motor development by watching

how a child holds a crayon or pencil, and noting how many blocks he

can stack to build a tower. He observes which hand the child favors

when writing or scribbling, and throwing a ball. Typically, " hand

dominance " is acquired by two years of age. The pediatrician also

looks at how a child copies lines and shapes, and if her skills are

age-appropriate. For example, three-year-olds are expected to be able

to draw a circle.

Information about a child's sensory profile is obtained through

questionnaires and observation. Some children are " tactilely

defensive, " meaning that they don't like to be touched on certain

parts of their bodies or exposed to certain textures, while others

push their bodies against yours. Others are hypo-responsive and need

to be bounced or have deep pressure applied, preferably through the

joints ( " proprioceptive " input) to get them to respond. Meanwhile,

their hyper-responsive counterparts are in constant motion, " bouncing

off the walls. "

It's not difficult to assess a child's social skills

and " pragmatics. " Does he make eye contact or " look through you? "

Does he play with you, or ignore you? While everyone else is excited

about a puppy and pointing to it, does he seem uninterested? Some

children are shy, but warm up over time, while the child who raises

concerns is the one who just won't let you into his world. It's

important that doctors allow parents to observe their child during

the evaluation so that they can check if the behavior is typical, or

if their son is " just not himself today. " All children have " off "

days, especially if they are coming down with a cold, or developing

an ear infection. In instances like this, to enable the physician to

make an adequate assessment, it's useful for her to see a videotape

of the child in a natural environment, such as his home or the

playground. "

=====

[Guest guest]

Hi ,

Thank you so much for responding. Larsyn definitely has the " soft signs " . He

has a weak

trunk, clumsy, low tone in oral area, stuffs his face, sensory issues with

food/textures/temperatures, hates light in face, wind on face, swings, severely

drools,

can't pucker, lick lips (smiles huge though!)..and I am sure a few other things

I can't think

of right now!

My best friend and sis-in-law are both special ed teachers who work primarily

with

autistic children (my niece is a recently graduated SLP ). They see a lot of

autistic signs in

him too, but can't say for sure...maybe PDD-NOS. He flaps his hand against his

ear when

he gets exited or nervous. He has limited eye contact (will look at you for a

moment, but

then looks away), gets very upset when having to change tasks, concentrates on

what he is

doing (almost ignoring you), sometimes I swear he can't hear me (though he has

had his

hearing tested twice and is perfectly normal!). Good news...he loves to play

with his

brother, gives the best hugs, loves to be held, and can be social. Most people

don't realize

anything is " wrong " with him, besides the no talking and major drooling!

His own pediatrician thought he just had a speech delay until I brought him in a

couple of

days ago (for something unrelated) and she started noticing some of the things I

mentioned above. She finally admitted that something more is going on. That is

how I got

the referral for the pediatric neurologist.

Even though his SLP says he works with apraxic children, I asked him about

PROMPT

therapy and he had no clue what that was. Though he does prompt Larsyn a lot

with

touching his face and using " tools " to get his mouth to form properly. I don't

think he feels

comfortable diagnosing someone as young as Larsyn (26 mo). I think he meant by

" other

issues " is his oral motor difficulties. Yet, he does believe Larsyn has

something

neurological going on. I think he contradicts himself! I think I need to sit

him down and

specifically ask him why he isn't diagnosing Larsyn at apraxic (oral and/or

verbal) .

I was told 4OCKIDS does recognize apraxia, hope I haven't been misled. They

come highly

recommended by many parents and professionals I know, so I am going to take a

chance.

Actually, his pediatrician " warned " me that they like to order tons of

diagnostic tests (to

rule things out)...sounds good to me!

I forgot that I had switched to 1/2 tsp fish oil (I figured it couldn't hurt

him!). He has been

babbling more lately and his SLP (and assistants) said he has been participating

in the

activities, attempting to make sounds and looking at the SLP's lips more. I

haven't told the

SLP that I have been giving him fish oil because I wanted to see if he noticed a

difference

in speech/behavior. I guess this could be because of the oil, it's hard to tell.

I LOVED The Late Talker. THANK YOU, THANK YOU, THANK YOU! I actually read my

copy in

two days (pretty hard with two and five year old boys). I gave it to my mom to

read so she

could understand what was going on with Larsyn and our family. She was one of

those

people you described in the beginning...she even said " Einstein didn't talk.... "

I think now

she realizes he is more that a typical " late talker " .

You give me hope.

-Jenna

>

> Jenna I just answered a similar question to yours last week which I

> have below. Just a few questions. What makes you lean towards the

> dual diagnosis of apraxia and autism? (what symptoms for autism?)

> What does the SLP mean that she doesn't want to diagnose apraxia due

> to the " other issues " What other issues?

>

> Some experts say around 50% of those with autism have apraxia while

> most with apraxia don't have autism however the confusion is that

> some still believe due to classic and dated information on apraxia

> that it's just a speech impairment (traditionalists view) while we've

> seen in reality today most apraxic children have other co

> existing " soft signs " such as sensory issues and/or hypotonia.

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

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

>

> Here's information on apraxia from a parent/neurodevelopmental

> pediatrician/SLP view and keep in mind even though Dr Agin for

> example lists various symptoms; not all apraxic children will have

> all the symptoms. While my son Tanner had both oral and verbal

> apraxia, hypotonia and sensory integration dysfunction -he almost

> never drooled -even while teething (!) yet Tanner had various oral

> motor problems -including oral motor weakness which was visible in

> photos even and oral apraxia in which he couldn't move his tongue or

> even smile etc. on command -and sensory mouth stuffing issues..but no

> drooling (that was my other son!)

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

>

> I'm just really asking because 1. you live in California where

> historically even if your child is " just " apraxic he will get the PDD

> diagnosis because he's got the sensory and the speech going on...but

> apraxia is not autism and PDD just confuses the therapy that's

> appropriate. 2. the place you are taking your child www.ockids.org

> only talks about autism and ADHD -do they recognize apraxia as well?

>

> About the fish oil: you've been using the equivalent of one capsule

> of ProEFA a day for 2 weeks. Most of us saw the first surges in a

> day to 3 weeks almost across the board and for years most of us just

> used the one capsule to start. Of course today most move up the

> dosage a bit quicker and are seeing even greater accelerations. Have

> you noticed any difference in mouth movements -babble -anything at

> all? If you notice even small signs let me know as that's a sign it

> will work and you'll see a surge in about one more week. If nothing

> at all -fish oil may not be the answer as it works for almost all -

> not all.

> http://www.cherab.org/information/historyEFA.html

>

> Sometimes being a professional in the medical field or being a speech

> language pathologist and having a child with apraxia is even

> harder ...to start...because other professionals forget that you're a

> parent first and human -and go through the emotions and need the

> support just like everyone else. Not that I know this (because I

> am " just " a parent) but I've been told by SLPs, OTs, PTs, MDs...and

> not all SLPs even know how to work with an apraxic child...speaking

> of which back to your son's SLP- please let me know what she meant

> by " other issues "

> PS -once up to speed -nobody will be able to mess with you!!!

>

> Here's the archive about what to expect which I pulled from The Late

> Talker. You'll probably want to take your copy with you to help

> secure the therapies and get coverage by using the sample letter.

>

>

> Re: Meeting w/ developmental pediatrician tomorrow

>

>

> Not sure if you have The Late Talker book but since my one co author

> is a neurodevelopmental pediatrician this is so well covered in the

> book I can't post it all here. If you don't have the book I'd

> recommend trying to find it before the appointment as there are sample

> letters in there that will help for securing therapy through EI for

> school or for insurance (coding etc.)

>

> Here's a clip from The Late Talker -St 's Press 2003 (get the

> paperback version as it's updated):

>

> " VISITING THE DOCTOR

>

> What can you expect when you take your son or daughter to one of

> these specialists? Each begins by obtaining a birth and medical

> history, looking for clues to a possible neurological cause for your

> child's developmental disorder. Some physicians may ask you to fill

> out a questionnaire; others may obtain an oral history. Commonly,

> there are questions about your pregnancy: Was it full-term? Did you

> take any medications or drugs? Did you consume alcohol? The doctor

> will want to know if your child has had frequent ear infections, a

> serious illness such as meningitis, or if there have been delays

> or " abnormalities " in his sitting, crawling, walking, speech, social

> or self-help skills. Have there been any regressions? As speech and

> language disorders may run in families he will query if other

> relatives have had speech and language delays, dyslexia, or other

> learning disabilities.

>

> More clues towards a diagnosis come from the physical and neurologic

> examination. Your doctor should measure your child's height, weight,

> and head circumference. A small head (microcephaly) compared to other

> children of the same age, or a large head (macrocephaly) can be

> significant. Microcephaly may be correlated with brain dysfunction.

> Macrocephaly usually warrants an MRI or CT scan to rule out anything

> serious. With either micro or macrocephaly, the doctor needs to check

> the parents to see if small heads or big heads run in the family. If

> they do, this would be an inherited trait and not cause for concern.

> There are many syndromes in which head size, certain facial features

> and certain skin markings anywhere on the body (neurocutaneous

> stigmata) are elements. The neurodevelopmental specialist examines

> overall muscle tone because benign congenital hypotonia (BCH) may be

> seen in children with apraxia. Muscle strength and coordination are

> best evaluated " dynamically, " that is watching the child in action—

> performing activities like lifting his arms above his head, throwing

> a ball, walking on heels and toes, running, and walking up and down

> stairs.

>

> To be complete, the doctor also checks deep tendon reflexes (DTRs),

> such as the knee jerk. (Most children with BCH have essentially

> normal DTRs). The doctor evaluates fine motor development by watching

> how a child holds a crayon or pencil, and noting how many blocks he

> can stack to build a tower. He observes which hand the child favors

> when writing or scribbling, and throwing a ball. Typically, " hand

> dominance " is acquired by two years of age. The pediatrician also

> looks at how a child copies lines and shapes, and if her skills are

> age-appropriate. For example, three-year-olds are expected to be able

> to draw a circle.

>

> Information about a child's sensory profile is obtained through

> questionnaires and observation. Some children are " tactilely

> defensive, " meaning that they don't like to be touched on certain

> parts of their bodies or exposed to certain textures, while others

> push their bodies against yours. Others are hypo-responsive and need

> to be bounced or have deep pressure applied, preferably through the

> joints ( " proprioceptive " input) to get them to respond. Meanwhile,

> their hyper-responsive counterparts are in constant motion, " bouncing

> off the walls. "

>

> It's not difficult to assess a child's social skills

> and " pragmatics. " Does he make eye contact or " look through you? "

> Does he play with you, or ignore you? While everyone else is excited

> about a puppy and pointing to it, does he seem uninterested? Some

> children are shy, but warm up over time, while the child who raises

> concerns is the one who just won't let you into his world. It's

> important that doctors allow parents to observe their child during

> the evaluation so that they can check if the behavior is typical, or

> if their son is " just not himself today. " All children have " off "

> days, especially if they are coming down with a cold, or developing

> an ear infection. In instances like this, to enable the physician to

> make an adequate assessment, it's useful for her to see a videotape

> of the child in a natural environment, such as his home or the

> playground. "

>

>

> =====

>

[Guest guest]

Re: eye contact

Dr. Megson has a theory of measles vaccine I think affecting eyes,

causing a vitamin A deficiency. Cod liver oil is part of the treatment

plan but things are a little more involved as I think an underlying

autoimmune thing is at play that the measles vaccine sets off. With my

nonspeech kid we had a period of limited eye contact/adhd, hair loss.

She came up low in vitamin A and severelydeficient in vitamin D so CLO

was a help.

[Guest guest]

Measles theory aside -Here's an archive which is based on what we

see in videos and in this group about apraxic children/eye contact:

" The lack of eye contact in apraxic children is not something new to

come up. In fact at the First Apraxia Conference in some of the

videos that were presented by Kaufman, a number of

professionals pointed out that while the children with apraxia were

attempting to speak -they had no eye contact at all. For example

pediatric neurologist Dr. Zimmerman was there, and he's

extremely knowledgeable about autism.

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

There was a difference however. These same children did make eye

contact while they were being spoken to, or while they were

playing. Due to this, the one theory is that the lack of eye

contact can be due to the amount of concentration these children are

putting into their speech attempts and/or frustrations. "

And more below including information from who is one of the

(many) parents in this group who's child was misdiagnosed as

autistic. I didn't reread the entire archive but I recall her saying

in her child's case the worst thing about the misdiagnosis was that

it wasted precious time she could have been securing appropriate

apraxia therapy.

~~~~~~~~~~~~~~start of archive

Re: apraxia and eye-contact

Hi !

Motor planning disorder affecting eye contact?

It is an interesting theory and one as a group we can each report

on. Ask your child to look one way and then others and report if

they can follow directions. It's how we all know that apraxia

affects the ability to blow one's nose -even at an older age. I

asked if anyone but Tanner had this problem -and posted about the

funny things that happened as we were teaching him to blow his

nose! Sure enough -many of you saw the same issues. It's also why

I suspect constipation is an issue too. The on command problem once

again. One can overcome all aspects of apraxia however!

(in most cases anyway)

Apraxia is the inability to do something or say something on

command. We do have literally one or two parents over the years

that reported their child was diagnosed as well with ocular apraxia -

but it's pretty rare in general -and in this group too. I do know

that the child I met personally who was diagnosed with ocular

apraxia had to wear glasses and they talked about surgery at that

time -but don't know if that was done.

The lack of eye contact in apraxic children is not something new to

come up. In fact at the First Apraxia Conference in some of the

videos that were presented by Kaufman, a number of

professionals pointed out that while the children with apraxia were

attempting to speak -they had no eye contact at all. For example

pediatric neurologist Dr. Zimmerman was there, and he's

extremely knowledgeable about autism.

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

There was a difference however. These same children did make eye

contact while they were being spoken to, or while they were

playing. Due to this, the one theory is that the lack of eye

contact can be due to the amount of concentration these children are

putting into their speech attempts and/or frustrations. Here's one

thing I wrote on this from the archives:

" Autism needs to be diagnosed outside of speech impairments. Many

apraxic children when young don't have good eye contact while they

are learning to talk. Working hard at motor planning? Also many

apraxic children will avert eye contact when they are frustrated

because nobody understands their attempts. These same children

however will quickly " develop " eye contact once frustrations are

reduced by either developing speech, or alternative ways of

communication such as simple sign or PECS. "

And in regards to other behaviors that can be misinterpreted:

" Due to frustration in their lack of ability to communicate even

simple basic needs, some may over time either lash out and be

misdiagnosed as having a behavioral problem or ADHD, and some may

begin to withdraw and be misdiagnosed as PDD. Just imagine the

incredible frustration of understooding everyone around you while

there was virtually nothing you could communicate back, even simple

basic

sounds.

These same children however will drop the " negative behaviors " as

they learn to communicate, or when alternative ways of

communication are provided. "

About misdiagnosis of PDD -below are a few posts from Chase

who co -founded ECHO of Canada. has much to say about

this. (perhaps she'll read this and add more!)

From: Chase <lchase@...>

Date: Fri Dec 12, 2003 11:51 am

Subject: LONG! PDD-NOS misdiagnosis, was Re: toe walking &

autism/pdd sym ptoms

Hi Traci and ,

Since I've gotten a couple of responses (on list and off), I'll post

an

explanation of our experiences - hopefully, it will be helpful.

Firstly - I'll give you a bit of history with my son. At 2 and a

half,

still not talking, we began the round of assessments. Quinn,

together with

a lack of speech, had some odd behaviour as well. Rather than post

the

detail here (it's extremely long) I've put together a page on our

family

website that is a summary of the issues we had concerns about in

December

1999, and which was submitted to the psychologist who diagnosed

Quinn as a

preliminary introduction to him. You can view the summary at the

following

webaddress:

(THESE TWO LINKS NO LONGER WORK)

http://www.dreamwater.org/wheaton/quinnfiles.html

<http://www.dreamwater.org/wheaton/quinnfiles.html>

Based on discussions with my husband and I, and 3 one half hour

visits with

Quinn, a psychologist dx'd him with PDD-NOS. You know, we had our

doubts

even then, but thought maybe we were in denial. There was something

that

just didn't fit about the dx - he did have some characteristics for

sure,

but it was more of a gut feeling that it didn't fit - you know what

I mean?

He also seemed to sense all medical professionals right off and

hated them

instantly, which didn't help when trying to assess him because he

really

wanted no part in interacting with them. I have issues with this

now.... I

didn't know any better then. I did a lot of research after the fact

that

stated that an accurate dx is best done with a multidisciplinary team

consisting of a psychologist, a developmental Ped., an SLP and an OT

at

least to rule out issues that may be causing certain

characteristics. When

the dx of PDD-NOS was removed in June 2001, it was done with a team

in place

(Developmental Psychologist, OT and SLP). Also, the possibility of a

speech

disorder was never even mentioned, even though our prime concern

brought to

the attention of doctors was his lack of speech. I also had issues

with the

standardized testing they use - I've said it before and I'll say it

again -

if the professionals would actually look up from their clipboards and

checkboxes to SEE the child they are examining, I think that

misdiagnosis

would be much less frequent. Alas, living within our current

conveyor belt

medical system where assessment and dx is done as quickly as

possible so you

can move on to the next subject in the lineup, this doesn't ever

seem to be

the case.

We started down the autism road - Quinn's name was put on a waiting

list for

ABA, and we started taking some courses to help him communicate

using PECS.

Really wasn't happy about the way they were insisting we use it. They

wanted to train him by not allowing him to get what he was asking

for unless

he gave us the picture. My problem with this was that they insisted

that

even if he gave us an approximation for the word, we not reward him

unless

it was paired with the picture- our intention for PECS was as a

prosthetic

for speech - not his sole form of communication, so we were a bit

discouraged. Doing more research, I came upon an apraxia website,

and it so

described Quinn's issues that I was dumbfounded that nobody had

mentioned it

to me before!

After this, we regrouped. We sought out speech therapy privately

with a

wonderful SLP who specialized in oral motor speech disorders (a

PROMPT

therapist - so instrumental in Quinn's eventual success). Don't get

me

wrong - success was slow coming, but as his ability to communicate

started

to improve, a lot of the behaviours and " quirks " he was exhibiting

that

contributed to the PDD-NOS dx, started to drop off.

Other issues started to emerge as well - he had some fine and gross

motor

difficulty, and was also given a dx of hypotonia to add to the ever

growing

basket of diagnoses we were collecting. We sought out OT to address

these

issues, and started supplementing with ProEFA. The EFA's were

extremely

helpful in that they improved his focus, not necessarily the speech

production. When he is not on them, he is a lot less willing to pay

attention to task, is whiny, rigid about the way things are done. In

fact,

we just recently ran out of ProEFA and decided to see once again if

we could

take him off them - he completely fell apart - we are resigned to

the fact

that Quinn needs the EFA's, and will continue to give him his " magic

Medicine " .

Some of the strategies we used for success:

-speech therapy with an SLP who specialized in oral motor speech

disorders,

and who was willing to adjust her therapy to fit Quinn's needs.

Quinn has

some sensory issues, and wouldn't let her touch his face for the

longest

time - as a PROMPT therapist, she used the methodology and modelled

on

herself, or would ask him if she could touch him first, etc.

-OT early on to address issues that weren't yet affecting him

functionally,

but that if left untreated, likely would have. The school system

(Kindergarten in Ontario starts at age 4, in the public school)

wasn't

willing to provide him with OT for his fine motor problems because

they

didn't find it a functional academic problem that he could only color

holding his crayon in a fist - we went private to address these

issues

before they became issues.

-Language therapy to address Quinn's delays caused by his late

acquisition

of speech.

-Social Play therapy - to boost Quinn's social skills affected by

his lack

of ability to communicate verbally with his peers. A Early Child

Education

worker integrated him into play situations in the daycare and at

home that

he would normally avoid because of his communication problems.

-directing, rather than attempting to defeat his extremely strong

will -

what we perceived as a real plus for motivating his success, the

professionals called a " compliance problem " on every report ever

written.

Although we recognized that Quinn's stubborn streak needed to be

controlled

somewhat, we also saw that it was helping him to keep up the very

difficult

work he had to do to succeed.

-Sneaky learning opportunities masked as things Quinn enjoyed - I

maintain

that Quinn learned his alphabet and letters because he so loved

watching the

Sesame Street videos - he loved the music to go along with it, and

naturally

picked things up by watching these tapes over and over.

A lot of love and support, from his parents, and his little sister -

his

biggest therapy partner.

Quinn is now in a regular grade one class, without supports, and is

therapy

free. He is a happy, well liked sociable little guy, doing extremely

well

in the regular curriculum (A's and a couple of B+s). I don't for a

second

believe he was " cured " of PDD-NOS - I don't believe the dx was

accurate to

begin with. He had a lot of very significant issues (the most

significant

being his apraxia) that we were able to deal with successfully over

a fairly

long period of time. My thoughts are that each child is different,

and that

therapy for each child needs to be fitted to their needs regardless

of the

label - you can't say that therapy method X is the method that will

be used

for all children with a particular dx.

Anyway, hope the info helps - feel free to e-mail me for more info.

Best regards,

Do EFA Supplements Help our Kids?

By Chase Wheaton

As a parent, I am always searching for ways to help my son Quinn with his speech

and language difficulties, and try to keep up to date with any new products or

therapy ideas. Several months ago, I read about the benefits of supplementing

with Essential Fatty Acids (EFA’s), and how it can improve our kids

concentration, as well as their speech production. In addition, our group was

invited to participate in a trial study of a product called ProEFA. ProEFA is

made up of Omega 3 (EPA and DHA from fish oil) and Omega 6 (GLA from borage

oil). This is a completely natural supplement made up of substances that are

lacking in the child’s diet. I know for Quinn, it made sense for us to try it

because the food items containing these natural ingredients are rarely consumed

in our house, so his diet could very well be lacking in them. This particular

supplement comes in a large capsule which is filled with the oils, and I must

say, I was skeptical as to whether or not Quinn would take this willingly. At

first, we poked a hole in the capsule with a pin, and squeezed the product onto

a spoon and fed it to Quinn that way. Now, Quinn pops the pill in his mouth, and

chews it like a gummy bear, squeezing the oil out and then disposes of the

capsule.

Did it work for Quinn?

We have been supplementing Quinn since March 2001. Since that time, there has

been a huge jump in his speech production, and overall behaviour. Quinn went

from stringing a maximum of three words together, to full sentences, including

his " little words " like " is " and " are " . All of a sudden, Quinn, who always

called himself " finn " , was able to hit the " Qw " sound and was able to refer to

himself as Quinn. In addition, Quinn’s concentration improved, and his rigidity

dropped off, which made speech therapy that much more successful. Is it a

miracle cure? I can’t say. Ever the skeptic, I would guess that the supplement

improved his concentration, and therefore, enabled him to put more effort into

his speech production.

Of interest, in June, we took a vacation to New Brunswick, and having run out of

the EFA we were using, picked up a very similar product to bring with us. Quinn

refused to take this new product for the 12 days we were away because it had a

taste to it that was not appealing to him. About half way through our vacation,

we noticed that Quinn was slightly more rigid (insisting things be done a

certain way), less patient, cried more and was much more demanding. This of

course could have been a product of the new environment we were in, but I

couldn’t rule out the absence of the supplement either. We started him back on

as soon as we got back into town, and he is now back to himself. I can’t say

with absolute certainty whether it was the supplement that has contributed to

Quinn’s breakthrough, but nor can I say that it wasn't. I will say that I feel

that it has made a difference, and that’s enough for me.

From: " lbwheaton " <lchase@...>

Date: Tue Dec 9, 2003 1:07 pm

Subject: Re: toe walking & autism/pdd symptoms

> As for autism and PDD diagnosis, our speech evaluator and both

therapists

> told us that just being apraxic puts Luke on the autism spectrum.

Hi - my alert went up at this statement. I know that SOMETIMES

kids with apraxia " look " like they have characteristics of autism,

apraxia itself does NOT put a child on the autism spectrum. Kids

with PDD/Autism can have apraxia and vice versa, or they can be stand

alone conditions, however, one condition doesn't necessarily lead to

the other. My alert goes off because my son was misdiagnosed with

PDD-NOS - I feel like if I continue to rant on this issue, I will be

booted off the list (smile!) - I am even tired of hearing myself

rant, so if you are interested, do a search on my username

(Lbwheaton) in the archives, you can get a good feel for our

experience with symptoms, treatments, etc.

I agree with Kim in that you should do your research on all the

disorders yourself - you will then be able to determine what best

fits - you are the single best advocate for your child, so keeping

informed is so important.

~~~~~~~~~~~~~~~~~~~~~~end of archive

was one of the people that started Echo of Cananda www.echo.ca and

through CHERAB took part in the parental feedback on fish oil spoken about here

http://www.cherab.org/information/historyEFA.html

you around for any updates?!!

=====

[Guest guest]

,

Thanks for posting. The two different types of eye contact stuff is

important. I am sorry if my post was misleading. My daughter's thing,

and this also was my nonspeech kid, was along the lines of an ADHD

thing and she did not look at you for a short time (3 mos, during the

worst of her metabolic stuff before we found it) when speaking to her.

If I am reading this right it jives with the different thing I have

seen in the only of Dr. Agin's patients I have seen, a truly apraxic

child and it is a different issue. May be why the formula that works

for most here does not involve CLO. With that said though the child I

am referring to was a CLO responder but it caused other problems. Some

things are definitely grey areas./

L

[Guest guest]

right on liz!

[ ] Re: overwhelmed and frustrated :-(

Re: eye contact

Dr. Megson has a theory of measles vaccine I think affecting eyes,

causing a vitamin A deficiency. Cod liver oil is part of the treatment

plan but things are a little more involved as I think an underlying

autoimmune thing is at play that the measles vaccine sets off. With my

nonspeech kid we had a period of limited eye contact/adhd, hair loss.

She came up low in vitamin A and severelydeficient in vitamin D so CLO

was a help.