Re: technologically confused - And an update

[Guest guest]

Hi Crys and welcome! It seems whatever you did to get this message through was

fine.

You are allowed to send messages here so must be an email issue. What is most

important is that the email address you send the message from is the one you

have your membership from. We chose to make this group private so it will only

allow messages to be posted and viewed by the members. Some of us forward

emails from one account to another -so even though you may have joined say with

one account if the email you forward to -say a gmail account for example isn't a

member -you will get a message saying you are not allowed to post messages here

-does that make sense? So your options would be to send from the email you

joined with -or if you forward emails make that one a member instead or as well

(put one on no email!!)

Up till 3 years old it's difficult to know for 100 percent certain if it's

verbal apraxia...unless there is oral apraxia. Typically suspected apraxia is

the diagnosis and appropriate therapies are recommended just in case. As there

are sensory issues that raises the odds that it isn't just a simple delay. What

do you mean by compulsive issues? In one way that could be part of the sensory

-but if you can provide an example or examples. I'm huge into seeking and

securing appropriate diagnosis to begin appropriate therapies and secure

appropriate placement once in the preschool program -but I'm not huge on psych

exams as I know too many that get misdiagnosed -and also frustrations from not

speaking (if there are any) can lead to secondary issues in behavior but that's

different than say an actual impairment because once you provide alternative

ways of communication -even simple ones such as simple sign or simple picture

exchange -the behaviors improve immediately. And also as apraxia in itself if

that's what your child has is so multifaceted -I'm also not one for stacking up

a child with multiple diagnosis. Just primary diagnosis, symptoms of that or

those diagnosis to secure therapy. I'm for sure much more aggressive on

expressive and much more suspicious on receptive and behavioral diagnosis. A

misdiagnosis of an expressive impairment won't in any way harm the child -can't

say the same about the other two. So I'm huge on second opinions as well.

(which means from a different hospital system than the first professional)

I am not sure what you mean by a lower dosage of fish oil? One regular sized

capsule of ProEFA is about the dosage the FDA approved for infant formula. Are

you saying you are providing less than that? Dr. Oz just had a show on this

this past week and said fish oils are the most important supplement anyone could

take and everyone (everyone!) should take them daily. Of course if not allergic

to fish! And it's not just him -it's the AMA, AHA, etc. Essential nutrition is

essential for human life and the body can not produce it on it's own so it needs

to be consumed. Due to diets today many go without essential nutrients -and yes

that will affect health in a negative way.

I just put up a " getting started page " at Pursuit which covers many of the basic

questions about essential nutrition -most of this is about NV

http://pursuitofresearch.org/getting-started/ and I do have info about fish oils

here but as it's mixed in -here it is

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/

It's so good to educate yourself about essential nutrition and talk to your

doctor and your child's doctor about it. In our society today we are in sorry

shape health-wise due to the fact that most are afraid of something as important

as fish oils or the foods in NV -but think nothing of feeding their child french

fries and doughnuts. As parents it's important to know the research which found

(the obvious) good nutrition will slightly raise IQ and poor nutrition will

slightly lower IQ

http://pursuitofresearch.org/2011/02/09/you-are-as-smart-as-what-you-eat/

Below is a recent new member message I just sent out which many hold more

answers. It does for sure sound like you are on it for evaluations -and that is

awesome! Please ask more questions -and if you have problems posting here

again email me at lisa@... so I can see if I can figure out why this is

going on with you. But again think it's what I wrote above.

~archive

Re: Not sure what to do ... please help!

Hi !

There are many reasons for a child to have a delay. But the " evaluations " of

speech delay or expressive delay....totally obvious but not a diagnosis. You

want to know 'why' he's not talking -you already knew he had a delay before you

brought him there. Is it due to motor planning, weakness, what? You note he has

sensory issues, they can also affect expressive language. Also while your child

is being screened for autism spectrum disorder, as to me from what you wrote it

sounds like you are dealing with professionals who don't have great knowledge in

apraxia, I'd be VERY careful. If diagnosed with autism and if that is not an

accurate diagnosis and say apraxia is, ABA therapy for apraxia is not

appropriate and has been found in numerous cases in this group to be

detrimental if not needed by the child. For those children that have both

autism and apraxia you want to make sure the ABA therapy is not to address the

motor planning impairments of apraxia –it's highly inappropriate and again can

be detrimental.

We do have one member that I know of in Minnesota who I know from there are few

others around her. I'll introduce the two of you in a private email because

I'm not sure if she wants her email on the web.

So apraxia is a possibility, but good news is that while it's difficult to know

for sure with a child under 3 if it's apraxia unless there is oral apraxia as

well, your child is almost 4 years old! My son was diagnosed with apraxia by

professionals that were able to diagnose him from the first time they met him.

I'm a huge believer in second opinions and I didn't tell each professional what

the other said –I just presented my son and they evaluated him. I find an

" evaluation " of " receptive disorder " to be a waste of money, " receptive

disorder " to be an assault to your child as they are not able to come up with a

true diagnosis for the " expressive disorder " and " articulation disorder " to be a

joke as your child is essentially nonverbal at almost 4 years old! Are they

kidding?!! AND- if it ends up your child is apraxic- articulation therapy you

have to be very careful with as well –too much of that can lead to stuttering

when they do begin to speak. So again it's like you are dealing with people

that read about apraxia in a textbook and not dealing with it in real life.

That's not what I would want! Is it possible to travel to seek an evaluation

from someone from say Wisconsin or Michigan? Are either of those states close

at all to you as I don't know in any other direction around you where you should

turn. I just wrote the other day if you can afford to it's worth even driving

for hours and getting a hotel room or flying to secure an appropriate diagnosis

for appropriate therapy and placement and your story is a perfect example why.

I mean how much longer are they going to string this along before they start

really helping your son?

Since you note sensory issues, if there is a speech delay together with " soft

signs " such as sensory integration dysfunction, hypotonia / low tone and/or

motor planning deficits in the body -that all points to the diagnosis of

apraxia. Please share what symptoms of autism your child has as I didn't read

any in this message. Sensory integration dysfunction is found co existing in

autism, but it's also found co existing in apraxia, in those with traumatic

brain injury, and standing alone. And if sensory integration dysfunction wasn't

common Jockey and other companies wouldn't have gone " tag-free " on the t-shirts.

There are therapies for sensory issues just as there are for all the other

symptoms you may be noting.

But again the one " diagnosis " I would refuse to have on my child's record unless

they could prove it would be the receptive disorder. Disorder is different than

delay- I wouldn't even allow receptive delay without proof- they already are

making claims that your child has an impairment of his receptive ability and

he's not even 4 and properly diagnosed yet! Shame on them!!! Please don't let

them shove your child into that box just yet without seeking an evaluation with

professionals who have knowledge in multifaceted communication impairments and

outside of just autism. Some of them once they rule out hearing impairment and

autism figure -oh he'll be fine up to a certain age and then sometime after 3

they start assuming receptive and learning disabilities due to the expressive

delay. For those under the age of 3 that are late talkers, 75% of them are

just that- children with developmental delays in speech which means they will

start talking fine soon –but just a bit later and probably with or without

therapy. But if your child is apraxic and in that other 25% you want to know.

And you want to provide your child with the benefit of the doubt when it comes

to receptive and cognitive ability at this point.

Your child may be dealing with issues beyond others of his age, and he is going

to need you to learn (in your free time in between laundry and all) how to

advocate for him -be his voice. Stand up for him and say " How do you know my son

has a receptive disorder when you can't even tell me why he's almost 4 years old

and not talking?! " " I want to know what testing you used to determine that "

I have found that those professionals that either are knowledgeable about

working with apraxic children, and when that's not possible, those professionals

that are knowledgeable about working with the deaf or hearing impaired

population to be better at evaluating those children with apraxia, or apraxia

and autism. You want to again secure an appropriate diagnosis for appropriate

therapy and placement. Those that work with the hearing impaired population

don't have preconceived negative views on expressive impairments. Just because a

child can't talk doesn't mean they don't think -have feeling -can't listen and

understand others talking about them like they aren't in the room.

It's wise to provide some sort of alternative communication- even simple sign or

simple picture exchange (think of a menu at a restaurant..if you were in another

country and couldn't say " pizza " you would know how to point to that photo of

pizza....but don't take my word for that because when I was in Paris I only

wanted a slice and got a whole pie- but you get the point) I HIGHLY recommend

the iPad if you can afford one –as they have pegged your child with a " receptive

impairment " and the iPad can prove them wrong. Please read this

http://www.facebook.com/topic.php?topic=15792 & post=106478 & uid=115029735601#post1\

\

06478 which is on our group's public facebook page http://www.apraxia.org

Have you read The Late Talker? http://www.cherabfoundation.org/latetalkerbook/

If not that is highly recommended.

Try to find other parents, again I'll introduce you to one. I plan on putting

together a new support page as there are some awesome parents that want to start

supports groups and I want to get info up on how to get that started. It seems

that you need that in your area!

Just remember -your child is still preschool and even if he was school age there

is so much hope for all children with communication impairments- we read about

" miracles " every single day. The most important things for speech delay is

appropriate evaluation to secure appropriate therapy and if needed for preschool

(in 6 months) placement with an IEP. After that you may want to look as well

into nutritional methods we find that help which would be the essential fatty

acids from fish oils

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

\

\

autism-and-other-communication-impairments and essential amino acids and

nutrients from NV

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

\

in-treatment-of-speech-impairments/

So in summary I would highly recommend the following.

1. If you have not yet read The Late Talker book -you can start reading it

online- go to Google Books and search. That will be a great resource. If you can

afford the ten dollars it will be worth getting a copy as there are sample

letters etc. in there that will help you advocate and the free online version

has parts cut out. I co authored that book with neurodevelopmental pediatrician

Dr. Marilyn Agin and international journalist Malcolm Nicholl who also co

authored the book The LCP Solution with Dr. Stordy (about fish oils)

2. I put reading the book first because if you do have insurance that book will

help -and I have more to help in this area if you need help in securing therapy

through insurance. I have some here also from our apraxia.org facebook page

http://www.facebook.com/topic.php?uid=115029735601 & topic=13830

3. A private evaluation with the following professionals that have knowledge

about VARIOUS multifaceted communication impairments....not just autism-

preferably those that are recommended by others

A. Speech language pathologist

B. NeuroMD (pediatric neurologist or developmental pediatrician)

C. Occupational therapist if the neuro and/or SLP suspect sensory and tone

issues (you may not be aware of the signs as you are a newbie and they may be

subtle at this age)

4. Find local support either in person or online.

5. Look into essential nutrients from fish oils and NV- here's info to share

with your child's doctor (once you find one!) about NV

http://pursuitofresearch.org/find-a-professional/

At your child's age he should have an IEP. It's good to have a " hero " (SLP,

neuroMD) on the outside of the system to help set and or approve the 3, 6 and

yearly goals in the IEP.

I know this may all sound overwhelming -but you don't have to know everything at

once and it will be OK. Most in our group have children that are mainstreamed

by kindergarten and are good students. I have a few messages here again at our

apraxia.org group for new members.

http://www.facebook.com/topic.php?uid=115029735601 & topic=13085

or

http://www.facebook.com/topic.php?uid=115029735601 & topic=7329

The good news is that you are out searching for your child which tells me that

he's going to be just fine. We just have to get you on the right track for what

to do next now- and some of the above will be a start to that! There is SO much

hope for a verbal and mainstreamed future!

Best!

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[Guest guest]

At the bottom of the message, but not the bottom of the digest, there should be

four or five tabs and one of them says reply via web post. If you click that one

then another tab will open with the subject already in and a text box to type

in.

>

> Hello all,

> I cannot figure out how to reply to a message from the digest. I click reply

and it keeps  bouncing back that I am not allowed to send messages through there

and to click on the link 'in the email.' huh??? someone help me out? lol.

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