Re: Hijacked list - (was Tanner)

February 10, 2008

Hmmmm that is the same attitude a few years back when I was talking to a

support group for apraxia. I mentioned about the fish oils and vitamin E

and everyone thought that was freakish and way out there.

However, there is a an apraxia biomed board.

ApraxiaDyspraxiaBiomedSupport

That may be more appropriate for those who need more than therapy or

fish oils.

Perhaps you may realize that apraxia within the last two or three years

is often tagged with numerous other issues like Sensory Integration

Disorder, autism, PDD-NOS, asthma, chemical sensitivity, tics etc.

I don`t think it is over or misdiagnosed either. (And whatever the dx,

all of these kids are smart.)

In the past four years numerous vaccines have been added to the infant

vaccine protocol including yearly flu shots that contain mercury.

This may be contributing to the other issues besides the apraxia.

You can poo poo this all away, but the fact of the matter is that most

of these kids here are suffering with GI problems, allergies, sensory

issues, etc. Addressing these issues along with doing therapy will help

facilate speech and communication more effectively and efficiently so

perhaps these kids can go to kindergarten without any signs of apraxia.

Instead of saying, this isn`t the apraxia that I know or knew, and we

didn`t need special diets or supplements aside from the fish oils and E

to achieve age appropriate speech, perhaps you could accept that the

kids with apraxia that you see for the most part these days have other

issues and maybe, just maybe, this is the new apraxia or dispraxia. Kids

are multiple affected nowadays compared with 5 or 10 years ago.

What is wrong with talking about what the latest is in helping our kids

or what is the lastest news with things that are preventing our kids

from improving.

Like I said, at one time the whole fish oil vitamin E thing was freakish

and way out there.

However if you would like to have this group for discussions limited to

this, then perhaps you could put a link to the biomedical approach to

helping children with apraxia, because it does help.

Within a few weeks of doing a diet intervention my apraxic kids were

talking and now

talking with beautiful articulation only after 10 months of

intervention. My boys were about 1year and 4 months in their

communication skills 10 months ago and now I have one that is age

appropriate (4 years 4 months, speaking in full beautiful sentences and

the other one is only a few months behind. No real therapies used, just

diet intervention and a little fish oil and lessening their toxic burden.

That is not freakish or way out there....it is just finding the thing

that works and preventing further damage. I didn`t spend thousands of

dollars or hours on therapy.

We got rid of milk and gluten and

preservatives, sugar, corn, soy, and some other starches, chemicals,

flouride, bad water and voila, problem solved within a 10 months.

I am

not alone with this approach either. Our group here at home is having

the same results. We are all stumping the therapists! Our six month

goals are being reached within weeks and we are all doing diet changes.

It is not overly aggressive and it is more preventative than anything.

Nothing scary here, just a mother following her instincts. I would do

anything to help my child, and I think for the most part, the kids that

you are seeing here now require MORE than you did for your child.

Personally, I wasn't into years of therapy (although we are now using

it for catch up and rehab) and I knew that there was something that was

affecting my child and I wanted to get rid of it so they could develop

normally. Diet was interfering. I knew that. And in a heartbeat, I

changed that for my child. I didn't need an anaphylactic reaction to

gluten or milk to make me take it out of their diet. I didn't need an

unreliable allergy test. I just needed to step back and see that

removing it did help. (it took the boys about seven months to rid their

bodies of the gluten and when it did...the speech flood gates opened.)

Take a good look at the kids out there with an apraxia diagnosis. Is

that all it appears to be? I am seeing more and more kids with apraxia

that have multiple dxs including gut issues. 10 years ago, when I worked

with these kids, I saw only apraxia. Now I see a host of other things

with it.

Times are changing.

Since you have a very respectable organization, maybe you could broaden

your focus to help ALL children with apraxia. Not just the few that have

only speech only issues.

Nothing is freakish and no one is way out there. We are all just moms,

trying to help our kids. Shouldn`t we stick together?

elmccann wrote:

> Thanks for posting this . I complained onlist a few months ago

> and nothing has changed. I don't mind the occassional mention of DAN

> protocols and diets. It's good to know what has helped other kids.

> I don't need to know every second of that child's life and have

> their " method " analyzed on an hourly basis.

>

> I have stopped referring people to this group and I think that's

> ashame. The group had a lot to offer. Now I only check the group

> occassionally on the website and pick the posts that appear to have

> some " meat " to them or an issue I might know something about. The

> apraxia specific information has gotten lost in the mix over the last

> 6 months or so.

>

> If people want to go indepth on dietary issues or other DAN

> protocols, it's probably more apropriate for them to start a new

> group or join existing groups for the specific interventions. I

> don't have any problem with posting links to the new group

> periodically if it will get the rambling off this list.

>

> M.

>

>> Liz your post is extremely misleading. You again are the exception

>> to the rule. Nobody ever said that keeping it simple to therapy and

>> fish oils and vitamin E works for every child here -it works for

>> just 'about' every child here. Yes there is that 7% or whatever -

>>

> but

>

>> reading your many messages one would believe that just about all the

>> kids here need to explore a host of other things.

>>

>> I can't disclose the details but soon all will know that the fish

>> oils and vitamin E alone work for I believe it was either just over

>> or just under 90%. You are one of the few people that post very

>> frequently -sometimes answering the exact same message 4 or 5 times

>> to the same person

>>

>> I do want you to be aware that off list I have received numerous

>> complaints from parents who have been members here for years that

>> believe many of the posts in the past few months

>> are " upsetting " " strange " " freakish " and that they " don't recognize

>> the group " which is why I keep posting archives since many of them

>> are uncomfortable with posting their views here anymore because

>> they'll get slew of responses from two or three people -the same

>>

> ones

>

>> that seem to have " taken over " Below is just one example without

>> using the person's name. We don't censor on this group so 'all' can

>> share and when people like the way the group is now or don't like it

>> I for one wish more would speak up rather than the same 3 people.

>>

> As

>

>> I've said recently it's a handful of parents in this group of

>> thousands who in the past few months are posting 90% of the

>> messages. And it appears that those few people don't have kids that

>> fit into the norm.

>>

>> recent off list we received:~~~~~~~~~~~~~~

>>

>> " The list has been hijacked. I don't read the digests any more---I

>> scan the titles, see the subject lines and authors and hit delete.

>> (Gotta be on the lookout for news from Dr. and her grant

>> seeking, after all).

>>

>> I hope someone doesn't hurt or kill their child looking for a quick

>> fix. I think Dr. and people like her investigating an immune-

>> response link and a malabsorption link are creative thinkers. But

>> they support the scientific method, not preying upon parents

>> desperate to " fix " things. I am grateful for the tone I found on

>> this

>> list when I was looking for info years ago when our child was first

>> diagnosed with apraxia. I'd be lost logging on today for the first

>> time and turned off by the freakishness.

>>

>> I'd like to suggest that a general intro message be posted

>> periodically giving some basics about The Late Talker, therapies

>> (PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some EI/IEP

>> intro. Something called " New to Apraxia? " or something like that

>> that

>> ties in with what you see on your website or however most people

>> find

>> the list.

>>

>> As it is, it's an echo chamber among a handful of people.

>>

>> Good to hear your child is thriving. "

>>

>> ~~~~~~~~~~~~~~~~~end of snip

>>

>> I believe the suggestion for " new to apraxia " is a great idea and

>> will send out the new member archive next.

>>

>> =====

>>

February 11, 2008

Hello friends - wanted to share my thoughts. I do enjoy reading

about the DAN! protocols and how they are helping apraxic children.

The inforamation shared has been valuable to our family. I have also

been looking for a more " mainstream " (not sure if that is the right

word) group, where I can discuss speech therapies, family dymanics,

frustrations, etc. More of a general apraxia message board, I

guess.

I would love to see more topics discussed, and I'll certainly make a

commitment to asking more of my general questions.

If those of us who traditionally lurk, for whatever reason, start

posting and replying more, perhaps we can get the balance in topics

that we are looking for.

Thanks so much for this board! What did parents of apraxic kids do

before the internet??

>

> Thanks for posting this . I complained onlist a few months ago

> and nothing has changed. I don't mind the occassional mention of

DAN

> protocols and diets. It's good to know what has helped other

kids.

> I don't need to know every second of that child's life and have

> their " method " analyzed on an hourly basis.

>

> I have stopped referring people to this group and I think that's

> ashame. The group had a lot to offer. Now I only check the group

> occassionally on the website and pick the posts that appear to have

> some " meat " to them or an issue I might know something about. The

> apraxia specific information has gotten lost in the mix over the

last

> 6 months or so.

>

> If people want to go indepth on dietary issues or other DAN

> protocols, it's probably more apropriate for them to start a new

> group or join existing groups for the specific interventions. I

> don't have any problem with posting links to the new group

> periodically if it will get the rambling off this list.

>

> M.

>

February 11, 2008

I agree, Thanks and .

I read other boards to see what other people are doing. knowledge is power

and all that.

I just wanted help with apraxia from this site or to be able to answer

questions that I have answers of what worked for us. I've grown frustrated

over the insistance of being told to keep testing my son for things that we've

already tested for. And I don't want to start an arguement, just wanted to

say my piece.

Sandy

[ ] Hijacked list - (was Tanner)

Thanks for posting this . I complained onlist a few months ago

and nothing has changed. I don't mind the occassional mention of DAN

protocols and diets. It's good to know what has helped other kids.

I don't need to know every second of that child's life and have

their " method " analyzed on an hourly basis.

I have stopped referring people to this group and I think that's

ashame. The group had a lot to offer. Now I only check the group

occassionally on the website and pick the posts that appear to have

some " meat " to them or an issue I might know something about. The

apraxia specific information has gotten lost in the mix over the last

6 months or so.

If people want to go indepth on dietary issues or other DAN

protocols, it's probably more apropriate for them to start a new

group or join existing groups for the specific interventions. I

don't have any problem with posting links to the new group

periodically if it will get the rambling off this list.

M.

>

> Liz your post is extremely misleading. You again are the exception

> to the rule. Nobody ever said that keeping it simple to therapy and

> fish oils and vitamin E works for every child here -it works for

> just 'about' every child here. Yes there is that 7% or whatever -

but

> reading your many messages one would believe that just about all the

> kids here need to explore a host of other things.

>

> I can't disclose the details but soon all will know that the fish

> oils and vitamin E alone work for I believe it was either just over

> or just under 90%. You are one of the few people that post very

> frequently -sometimes answering the exact same message 4 or 5 times

> to the same person

>

> I do want you to be aware that off list I have received numerous

> complaints from parents who have been members here for years that

> believe many of the posts in the past few months

> are " upsetting " " strange " " freakish " and that they " don't recognize

> the group " which is why I keep posting archives since many of them

> are uncomfortable with posting their views here anymore because

> they'll get slew of responses from two or three people -the same

ones

> that seem to have " taken over " Below is just one example without

> using the person's name. We don't censor on this group so 'all' can

> share and when people like the way the group is now or don't like it

> I for one wish more would speak up rather than the same 3 people.

As

> I've said recently it's a handful of parents in this group of

> thousands who in the past few months are posting 90% of the

> messages. And it appears that those few people don't have kids that

> fit into the norm.

>

> recent off list we received:~~~ ~~~~~~~~~ ~~

>

> " The list has been hijacked. I don't read the digests any more---I

> scan the titles, see the subject lines and authors and hit delete.

> (Gotta be on the lookout for news from Dr. and her grant

> seeking, after all).

>

> I hope someone doesn't hurt or kill their child looking for a quick

> fix. I think Dr. and people like her investigating an immune-

> response link and a malabsorption link are creative thinkers. But

> they support the scientific method, not preying upon parents

> desperate to " fix " things. I am grateful for the tone I found on

> this

> list when I was looking for info years ago when our child was first

> diagnosed with apraxia. I'd be lost logging on today for the first

> time and turned off by the freakishness.

>

> I'd like to suggest that a general intro message be posted

> periodically giving some basics about The Late Talker, therapies

> (PROMPT, KAUFMANN, et al), omegas and Vit. E, and maybe some EI/IEP

> intro. Something called " New to Apraxia? " or something like that

> that

> ties in with what you see on your website or however most people

> find

> the list.

>

> As it is, it's an echo chamber among a handful of people.

>

> Good to hear your child is thriving. "

>

> ~~~~~~~~~~~~ ~~~~~end of snip

>

> I believe the suggestion for " new to apraxia " is a great idea and

> will send out the new member archive next.

>

> =====

>

February 11, 2008

In a message dated 2/11/2008 12:50:13 P.M. Eastern Standard Time,

elmccann@... writes:

On most of my lists, people say what helped them and if others are

interested they usually join a group that discusses that intervention

in detail.

I'm not looking to offend anyone with what I'm about to say-- so please

receive my words in the gentle manner in how I want it to come across.

If I wanted to join yet ANOTHER group to discuss only ONE of the issues that

would plague my Apraxic child, I would just do that outright.

But I can't imagine that being something that would work for the majority of

people out there-- because no one has that sort of time to join multiple

lists for each of the issues that we might be dealing with.

You mentioned that no one would want to hear the details of your son's

seizure disorders-- but how do you KNOW that? How do you know that someone

here

might NEED to hear those details in order to help their own child?

I dunno-- but I've thought about this list for months now-- and I just don't

understand what the big deal is about people talking about Biomed issues.

As a new list member when I first came-- was it overwhelming?? ABSOLUTELY

yes! But only because I jumped head first into a serious issue that people

here had been dealing with for years and I was a newbie.

I sometimes wish there would be MORE details so I could understand what most

of the women are talking about.

But to say that things like the Biomed has nothing to do with this list-- I

have to DISAGREE completely.

We should *ALWAYS* look at our children from a WHOLISTIC point of view,

since that's how the body works. Everything is connected and it all has

something to do with other things going on in the body-- so it just makes sense

that

this ALL has something to do with our children's Apraxia.

The easiest thing that makes SENSE for most of us who might not want to read

through all the " extras " is to simply NOT READ all the threads. You take

what pertains to your situation, and get rid of the rest.

I know all email programs allow the reader to lump the emails into subject

category, so it's super easy to read the main thread and see if it pertains to

your home life or needs, and if not-- simply DELETE and move on to the next

subject.

Isn't that what's easiest to do??

And for the record-- I don't even do anything Biomedically (yet). We've had

amazing success with the traditional therapies that my son's getting, and I

seriously doubt that he has any allergies, etc-- so I'm not saying this

because I have a particular " side " that I prefer in these discussions- but I'm

saying all of this from a middle-of-the-road stance-- and because it just makes

sense to me.

I hope I haven't offended-- and the " you " referred to is a GENERAL you and

not specific to any one person, even if I've used someone's words to

highlight and respond to.

I hate to see people leave a group that is AMAZING and HELPFUL, so I'm

trying to avoid that happening. Maybe we can all just realize that sometimes

the

Biomed talk is too much for others, and you can always send the information

to that poster DIRECTLY and right to their email box. And maybe-- on the flip

side of things, others who get annoyed at so much " extra " talk can simply

categorize their emails by subject and simply DELETE what doesn't pertain to

them.

That sounds like a reasonable compromise-- doesn't it?

Becky

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

February 11, 2008

,

I think you are missing something here. People on this list discuss everything

from IEP's and Speech to diet, supplements and lessening the toxic burden

because we have seen results with all of them for our childs apraxia. These

aren't off topic and do directly affect our childs abilities. Nobody has time

to read every message so like you said, read the ones you are interested in. We

all have children with apraxia here and are discussing ways we have found to

help them. I did all the mainsteam stuff with no results. If I had known about

diet sooner we would be much farther along. It isn't a separate topic - I got

more sounds and occasional words and ability when I added diet, than anything I

tried before. It is enhancing everything, including the mainstream therapy,

that I am doing to get my son talking. If someone is posting about their pet or

their job, it is off topic. But if it is something that is helping their

child's apraxia and helping them get closer to speaking

-I don't see how that doesn't belong here. Everyone is sharing things that they

have found to help their child's speech--and that is completely about apraxia.

-------------- Original message --------------

From: " luckymom987 " <eileenduffy999@...>

Hello friends - wanted to share my thoughts. I do enjoy reading

about the DAN! protocols and how they are helping apraxic children.

The inforamation shared has been valuable to our family. I have also

been looking for a more " mainstream " (not sure if that is the right

word) group, where I can discuss speech therapies, family dymanics,

frustrations, etc. More of a general apraxia message board, I

guess.

I would love to see more topics discussed, and I'll certainly make a

commitment to asking more of my general questions.

If those of us who traditionally lurk, for whatever reason, start

posting and replying more, perhaps we can get the balance in topics

that we are looking for.

Thanks so much for this board! What did parents of apraxic kids do

before the internet??

>

> Thanks for posting this . I complained onlist a few months ago

> and nothing has changed. I don't mind the occassional mention of

DAN

> protocols and diets. It's good to know what has helped other

kids.

> I don't need to know every second of that child's life and have

> their " method " analyzed on an hourly basis.

>

> I have stopped referring people to this group and I think that's

> ashame. The group had a lot to offer. Now I only check the group

> occassionally on the website and pick the posts that appear to have

> some " meat " to them or an issue I might know something about. The

> apraxia specific information has gotten lost in the mix over the

last

> 6 months or so.

>

> If people want to go indepth on dietary issues or other DAN

> protocols, it's probably more apropriate for them to start a new

> group or join existing groups for the specific interventions. I

> don't have any problem with posting links to the new group

> periodically if it will get the rambling off this list.

>

> M.

>

February 11, 2008

I've been down with the flu so I'm far behind in posts. I

apologize for being MIA from moderating duties! I'm assuming that a

number of you don't recognize my name because I don't post very often

now. Maybe some of the old time people do remember the roller

coaster that I went through with EI, SLP's and other issues

surrounding Nick's having apraxia. He is now 6, soon to be 7 at the

end of April (he's already working on a wish list! lol!). I have

learned SO much from this list. I had people help me through the

very worst time of my life when I felt lost and unable to help my

son. There were supportive posts, private emails and phone calls

that gave me strength and inspiration to keep pushing for the right

therapy for my son.

And then there was fish oil. If any of you remember my posts you'll

know that we have never been able to go past 1 capsule a day without

some major breaking down in Nick's emotions and over two weeks of

behaviors that would make an even more tolerant person than I think

of sending him to Siberia. Now we've added a capsule of Vit E to the

mix. We've had the testing that Dr. suggested. He IS a

responder, (speach improves when taking) but he can't seem to tolerate higher

levels at this time in his life. He's also not had therapy since last June

because his public school " released " him but a private SLP says he tests at

having moderate to severe language

impairment. That said, I wish you could hear him speak! I am so

proud of what he has accomplished. I wish all of you that helped me

in the past with words of encouragement could hear him! I wish those

of you with children who are just being diagnosed, who you worry will

never speak at all, I wish you could hear him! I want to

yell, " DON'T LOSE HOPE! "

Bottom line, I don't really have anything against all the biomed

talk. I've learned from it what I am able to and will continue to

try to understand as much as I can. What I AM upset by is the fact

that not that long ago I posted I think two times looking for insight

and I don't think anyone responded. I just don't want people leaving

this group because the posts seem to be all protocol etc. I still

need to ask questions regarding therapy and teaching my son to read

etc. AND I want to give to others what was given to me when we first

learned of apraxia. I know there are still others out there seeking

the same thing. I'd hate to think of someone needing support coming

here but being over whelmed at all the testing etc. and leaving

because all they needed at the time is hand holding.

Different therapies, supplementing and diets work for different

children. This is a wonderful place to learn all of it. I just hope

that it can continue to be supportive and informative for all of us.

All the best,

McCann

February 11, 2008

For what it's worth. I agree with KRisten (PP), and further I

wouldn't at all use the term " hijacked " - I would however say the

list has EVOLVED appropriately. I read several lists, and before

the " 3 posters " the list (in my opinion) was stale and out of date.

It is because of the " 3 posters " I have decided to come back to the

list and continually find a lot of great resources. The discussions

(particularly from the " 3 posters " ) have been extremely helpful and

enlightening and right on target with where I am at with my child.

The terms " freakish " " strange " , duh? I can only interpret that as

someone who's out of the " loop " comes back in to a hot bed of avid

mom worriors reading, going to conferences and exposing the group to

new research. As someone said, change (evolution) is wonderful.

just my 2 cents... i hope the list continues moving FORWARD, and

thank the " 3 posters " .. you are ON IT!

> >

> > Thanks for posting this . I complained onlist a few months

ago

> > and nothing has changed. I don't mind the occassional mention of

> DAN

> > protocols and diets. It's good to know what has helped other

> kids.

> > I don't need to know every second of that child's life and have

> > their " method " analyzed on an hourly basis.

> >

> > I have stopped referring people to this group and I think that's

> > ashame. The group had a lot to offer. Now I only check the group

> > occassionally on the website and pick the posts that appear to

have

> > some " meat " to them or an issue I might know something about. The

> > apraxia specific information has gotten lost in the mix over the

> last

> > 6 months or so.

> >

> > If people want to go indepth on dietary issues or other DAN

> > protocols, it's probably more apropriate for them to start a new

> > group or join existing groups for the specific interventions. I

> > don't have any problem with posting links to the new group

> > periodically if it will get the rambling off this list.

> >

> > M.

> >

>

February 11, 2008

Cincy,

I think you missed my point. I'm not againt discussing any

intervention, but people need to self regulate. I wouldn't mind a

periodic summary of what helped someone's child get better. I like

to know what else is available, but I don't need to hear every minor

detail 20-30 times a day. I don't think many people would be

interested in all my seizure disorder discussions even though that is

what caused my son's apraxia. There is a limit to what is

appropriate for a particular group. The therapy and IEP questions

should not be lost in the shuffle.

On most of my lists, people say what helped them and if others are

interested they usually join a group that discusses that intervention

in detail.

> > Thanks for posting this . I complained onlist a few months

ago

> > and nothing has changed. I don't mind the occassional mention of

DAN

> > protocols and diets. It's good to know what has helped other

kids.

> > I don't need to know every second of that child's life and have

> > their " method " analyzed on an hourly basis.

> >

> > I have stopped referring people to this group and I think that's

> > ashame. The group had a lot to offer. Now I only check the

group

> > occassionally on the website and pick the posts that appear to

have

> > some " meat " to them or an issue I might know something about.

The

> > apraxia specific information has gotten lost in the mix over the

last

> > 6 months or so.

> >

> > If people want to go indepth on dietary issues or other DAN

> > protocols, it's probably more apropriate for them to start a new

> > group or join existing groups for the specific interventions. I

> > don't have any problem with posting links to the new group

> > periodically if it will get the rambling off this list.

> >

> > M.

February 11, 2008

I actually would be interested in your siezure disorder and the

theory behind it causing apraxia. I can't rule anything in or out

without reading about it all.

>

> Cincy,

>

> I think you missed my point. I'm not againt discussing any

> intervention, but people need to self regulate. I wouldn't mind a

> periodic summary of what helped someone's child get better. I like

> to know what else is available, but I don't need to hear every minor

> detail 20-30 times a day. I don't think many people would be

> interested in all my seizure disorder discussions even though that

is

> what caused my son's apraxia. There is a limit to what is

> appropriate for a particular group. The therapy and IEP questions

> should not be lost in the shuffle.

>

> On most of my lists, people say what helped them and if others are

> interested they usually join a group that discusses that

intervention

> in detail.

>

February 11, 2008

Testing shows a window in time. The progressive nature of this thing

that harms our kids sometimes requires retesting. A pain and also

makes you not want to relive old hope, but that is how it is.

Malabsorption doesn't happen overnight. Neither does much of the

stuff in the labs. It is often only seen over time. In fact now that

my son is learning better I still have to retest stuff to make sure

he did not get physically worse during all the changes. Closest I can

get to knowing what is going on at the cellular level and to be sure

I am not accidentally doing something to mes up continued progress.

>

> I agree, Thanks and .

>

> I read other boards to see what other people are doing. knowledge

is power

> and all that.

> I just wanted help with apraxia from this site or to be able to

answer

> questions that I have answers of what worked for us. I've grown

frustrated

> over the insistance of being told to keep testing my son for things

that we've

> already tested for. And I don't want to start an arguement, just

wanted to

> say my piece.

> Sandy

>

> [ ] Hijacked list - (was Tanner)

>

> Thanks for posting this . I complained onlist a few months ago

> and nothing has changed. I don't mind the occassional mention of

DAN

> protocols and diets. It's good to know what has helped other kids.

> I don't need to know every second of that child's life and have

> their " method " analyzed on an hourly basis.

>

> I have stopped referring people to this group and I think that's

> ashame. The group had a lot to offer. Now I only check the group

> occassionally on the website and pick the posts that appear to have

> some " meat " to them or an issue I might know something about. The

> apraxia specific information has gotten lost in the mix over the

last

> 6 months or so.

>

> If people want to go indepth on dietary issues or other DAN

> protocols, it's probably more apropriate for them to start a new

> group or join existing groups for the specific interventions. I

> don't have any problem with posting links to the new group

> periodically if it will get the rambling off this list.

>

> M.

February 11, 2008

Just thought I'd chime in (since I'm just a lurker) and say that I've

almost unsubscribed from this list a few times in the last few months.

I'm just not in the " the environment is terrible and I have to change

everything about our lives " camp and I have felt very uncomfortable

even reading on this board lately. There have been a few times I

wanted to ask a question but I knew what the responses would be. I'd

be told to " do a trial of milk elimination " , call NACD, go to a DAN,

get rid of your regular drinking water and don't use toothpaste

because it has flouride.

My son went from being considered " severe apraxia " 2 months ago to now

being mild to moderate. He just turned 3 today and NONE of his

improvement is because of major changes. I do give him fish oil and

vitamin E when I remember or when he doesn't fight it, but that's the

only thing we are doing other than speech therapy. In fact, his

biggest improvement came when he started preschool 3 days a week (he

started on Jan 2). My son now has a speech therapist that he LOVES to

work with and that seems to be a big factor. His new speech therapist

also seems to be awesome at her job!!

I'm so thrilled about his progress. And, I'm happy I didn't make

massive lifestyle changes that would have affected/disrupted our

entire family (4 kids besides my husband and myself). If I had made

those suggested changes 3 months ago then I would have thought it was

the changes and I'd be afraid to go back to " normal " fearing that my

son might regress.

So, I just want to say that there are other options! Progress can and

does often occur with mainstream therapies, too.

I know I'd love to be able to post/respond on this message board

without fear of being told I HAVE to make major dietary and lifestyle

changes. I would just like to see more variety and not be able to

anticipate the answer to every question.

Bridget

>

> Cincy,

>

> I think you missed my point. I'm not againt discussing any

> intervention, but people need to self regulate. I wouldn't mind a

> periodic summary of what helped someone's child get better. I like

> to know what else is available, but I don't need to hear every minor

> detail 20-30 times a day. I don't think many people would be

> interested in all my seizure disorder discussions even though that is

> what caused my son's apraxia. There is a limit to what is

> appropriate for a particular group. The therapy and IEP questions

> should not be lost in the shuffle.

>

> On most of my lists, people say what helped them and if others are

> interested they usually join a group that discusses that intervention

> in detail.

>

February 11, 2008

I suppose someone would consider me an old timer. I don't mind at all the

variety of discussions and ideas that are on this list and frankly, the only

time I do get uncomfortable is one someone obviously makes a not so nice remark

about another poster even if they don't understand themselves that they are

not being so nice.

I have learned a tremendous amount on this list. But if I don't happen to

agree with someone or don't find the information applicable to my child, I just

delete the post or don't read it based upon the caption; no biggie.

Also, what works for one child, may not work for another. So, I welcome all

ideas and feedback from all parents as to what they did and what did or didn't

work.

Because of the recent discussion about the NACD, I am looking into it, and

might embark upon that program. But if it were not for a few parents'

encouraging words and feedback about their experiences, I would not be

considering it.

Another benefit of the different ideas is that a parent might read about

another child's experiences or issues and find out that their own child might

have a sensitivity/allergy to something or perhaps should be evaluated for

seizures or other issues they didn't think about before.

For instance, I know that the discussions on constipation which deal with

overall health, are very helpful in our household.

So, I hope that people tune in to what is applicable to them and have

tolerance for what isn't or what they don't necessarily believe in. Carolyn

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

February 11, 2008

To weigh in briefly, I agree.

I would not favor a censored group. I also would be fearful of

requiring, or even suggesting, that people take their differing

views and approaches elsewhere to discuss. Where would that get us,

really? The same place many our busy treating professionals may be,

looking only at stray pieces of a complicated and potentially

complex puzzle? No, thank you.

As I see it, the value of a list like this is that so many different

(yet in some ways similar) experiences are shared and we learn and

know more about the big picture concerning theories, therapies and

interventions for our kids, all of whom may differ in many ways.

And, we get the advantage of the tried and true, new and different,

and maybes but maybe nots.

Yes, I agree, it can be work to sift through and find what you may

need or think may help. And, we have to be discerning as well. All

true. But, that which may not help me, could very well be the

saving grace for someone else. I would hate to lose sight of that

reality, simply because I think there may be a lot to read at

times.

Bottom line, I would rather have more information available, not

less. Turns out, this is one of those matters for which I firmly

believe less is NOT more. :-)

> > >

> > > Thanks for posting this . I complained onlist a few months

> ago

> > > and nothing has changed. I don't mind the occassional mention

of

> > DAN

> > > protocols and diets. It's good to know what has helped other

> > kids.

> > > I don't need to know every second of that child's life and

have

> > > their " method " analyzed on an hourly basis.

> > >

> > > I have stopped referring people to this group and I think

that's

> > > ashame. The group had a lot to offer. Now I only check the

group

> > > occassionally on the website and pick the posts that appear to

> have

> > > some " meat " to them or an issue I might know something about.

The

> > > apraxia specific information has gotten lost in the mix over

the

> > last

> > > 6 months or so.

> > >

> > > If people want to go indepth on dietary issues or other DAN

> > > protocols, it's probably more apropriate for them to start a

new

> > > group or join existing groups for the specific interventions.

I

> > > don't have any problem with posting links to the new group

> > > periodically if it will get the rambling off this list.

> > >

> > > M.

> > >

> >

February 11, 2008

All of it sounds reasonable. For the record: I lurked a year ago and

fish oil and all that alpha gamma talked scared me away even though

it was working. In May I was about to try it but surgery thwarted

that and we accidentally found the gluten stuff. Fish oil and E

actually is biomed. The specific biomed I think that offends people

is the vitamin, mineral, and other talk I believe and also people

outlining progress. Oh well, just wanted to get that out.

>

> In a message dated 2/11/2008 12:50:13 P.M. Eastern Standard Time,

> elmccann@... writes:

>

> On most of my lists, people say what helped them and if others are

> interested they usually join a group that discusses that

intervention

> in detail.

>

> I'm not looking to offend anyone with what I'm about to say-- so

please

> receive my words in the gentle manner in how I want it to come

across.

>

> If I wanted to join yet ANOTHER group to discuss only ONE of the

issues that

> would plague my Apraxic child, I would just do that outright.

> But I can't imagine that being something that would work for the

majority of

> people out there-- because no one has that sort of time to join

multiple

> lists for each of the issues that we might be dealing with.

>

> You mentioned that no one would want to hear the details of your

son's

> seizure disorders-- but how do you KNOW that? How do you know that

someone here

> might NEED to hear those details in order to help their own child?

>

> I dunno-- but I've thought about this list for months now-- and I

just don't

> understand what the big deal is about people talking about Biomed

issues.

> As a new list member when I first came-- was it overwhelming??

ABSOLUTELY

> yes! But only because I jumped head first into a serious issue

that people

> here had been dealing with for years and I was a newbie.

> I sometimes wish there would be MORE details so I could understand

what most

> of the women are talking about.

>

> But to say that things like the Biomed has nothing to do with this

list-- I

> have to DISAGREE completely.

> We should *ALWAYS* look at our children from a WHOLISTIC point of

view,

> since that's how the body works. Everything is connected and it

all has

> something to do with other things going on in the body-- so it just

makes sense that

> this ALL has something to do with our children's Apraxia.

>

> The easiest thing that makes SENSE for most of us who might not

want to read

> through all the " extras " is to simply NOT READ all the threads. You

take

> what pertains to your situation, and get rid of the rest.

> I know all email programs allow the reader to lump the emails into

subject

> category, so it's super easy to read the main thread and see if it

pertains to

> your home life or needs, and if not-- simply DELETE and move on to

the next

> subject.

> Isn't that what's easiest to do??

>

> And for the record-- I don't even do anything Biomedically (yet).

We've had

> amazing success with the traditional therapies that my son's

getting, and I

> seriously doubt that he has any allergies, etc-- so I'm not saying

this

> because I have a particular " side " that I prefer in these

discussions- but I'm

> saying all of this from a middle-of-the-road stance-- and because

it just makes

> sense to me.

>

> I hope I haven't offended-- and the " you " referred to is a

GENERAL you and

> not specific to any one person, even if I've used someone's words

to

> highlight and respond to.

>

> I hate to see people leave a group that is AMAZING and HELPFUL,

so I'm

> trying to avoid that happening. Maybe we can all just realize that

sometimes the

> Biomed talk is too much for others, and you can always send the

information

> to that poster DIRECTLY and right to their email box. And maybe--

on the flip

> side of things, others who get annoyed at so much " extra " talk can

simply

> categorize their emails by subject and simply DELETE what doesn't

pertain to

> them.

> That sounds like a reasonable compromise-- doesn't it?

>

> Becky

>

> **************The year's hottest artists on the red carpet at the

Grammy

> Awards. Go to AOL Music.

> (http://music.aol.com/grammys?NCID=aolcmp00300000002565)

>

February 11, 2008

what you brought up as new is not new in the past 2-3 years for

apraxic children! Check the archives even back from when this group

first started around 8 years ago. I believe we all know that " pure

apraxia " is very rare -apraxia is multifaceted for most and has

always been. That's one of the early ways to tell the difference

between a child that is " just " a late talker and one who may have

apraxia.

Not all late talkers need therapy -only those with impairments. Not

all late talkers need special diets or to eliminate milk, even with

impairments most don't -but all with impairments of speech 'need'

therapy. The brain responds to multiple stimuli even if dietary

changes help more. And...most of this group for years has had

children mainstreamed and talking by kindergarten just doing the

basics of therapy and fish oils as one can read in The Late Talker.

The difference is back a few years ago -only those that fish

oils 'didn't' work for went through the time and money of special

diets.

The choice is not eliminate toxins - change diet to heal the gut as a

cure -or speech and occupational therapy with fish oil and vitamin E

to overcome -but I kind of wish I had that study to post here. Based

on archives which we do have -the basics work for most.

Also the point is missed -I don't believe anyone here views all

biomed as freakish as fish oil in itself is biomed. Our group turned

into a daily conversation about topics such as elimination diets -

how to give B 12 shots while your child is sleeping without pain -

and how " lead causes dyspraxia " stated as if factual. Here's factual

information on lead.

http://www.bridges4kids.org/lead-facts.html

This group has been around for about 8 years. The old information is

priceless. It's from parents and professionals just like us of

thousands of children over an 8 year period who have tried various

therapies, strategies, formulas and dosages to know what worked over

time. It's fine if you prefer more recent in depth conversations

from a handful -but please don't throw out the baby with the bath

water. This group -the beauty of it is that it's uncensored. You

are not happy and you can post why and others can read it. That is

the difference between this group and others. Most only post the

view of the list owner.

Besides how can information be stale if it's based on what is working

and on what is not working for thousands?! Research is based on a

fraction of what we have at our fingertips here. But research is

credible - this group's information in anecdotal.

Just because you pay more for your advice -and just because it's new

advice - doesn't always make it better. Some of you may have missed

the one post just last week where the parent went to a DAN doctor who

switched her child's EFA formula and that child stopped

progressing ...which as in most cases came up before.

Post snip from Holly Thu Feb 7, 2008 7:34 pm

" ...Adam has done so well in the last 6 months especially, we are up

to about

100 clear words, with approximations and 2-3 word combinations

throughout the day...but we seem to have hit a standstill in the last

few weeks. A DAN! doctor we just saw changed his fish oil dosages and

I

am wondering if that is it. I will wait a little while longer to see

if that is possible. " ...

/message/74120

And archive from over 7 years ago:

Fri Nov 30, 2001 8:58 pm

" I know someone else who switched after blood analysis (Suzanne

Smolyar's daughter ) and she did well-but just recently Suzanne

put back on ProEFA again in spite of what the blood analysis

said she needed and had another surge. "

/message/6035

As a mom myself I trust this group...and if I don't always trust it

every minute -I trust it over time. We are passionate about our

beliefs because it affects our own special child or children -or the

children we see in our practice/class - and that's why we are here.

None of us wants our child to be a guinea pig to know what works or

doesn't work so most of us do search for 'something' to assure us

that our methods are valid and benign. Some things you can't teach

people they have to learn the hard way -this group is the easy way.

For most basic questions the answers are here.

We as humans don't understand 100% about how the human brain works -so

don't for a minute believe that anyone knows for sure what apraxia

is and why so many children are being diagnosed with it now. Apraxia

doesn't come with autism 'today'...autism in many cases came with

apraxia from way back when they started diagnosing apraxics as

autistics and today some that diagnose autism are aware of it.

Apraxia has always been under-researched, so in most cases

undiagnosed, undetected and unknown -but there are far more with

speech impairments like apraxia than there are with autism.

Written in 2002 -multifaceted views of apraxia

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

Date: Mon Feb 2, 2004 12:38 pm

Subject: Down the road and off the road/parent observed stages of

apraxia

I first wrote this over two years ago in January 2002 for inclusion

in The Late Talker as parent observed stages of apraxia viewed

through our grouplist. This list was approved by all CHERAB

advisors

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

(but needed cleaning up which I never did)

We ended up not including this in The Late Talker because even

though approved, in the final cut we needed to edit out almost 300

pages for our book, and this included awesome pages that were

already completed. Dr. Marilyn Agin, Malcolm Nicholl and I chose to

leave in only the most critical information for a parent of a newly

diagnosed apraxic child to know.

I still don't want to clean this up, or change from my original

writing from over 2 years ago -so here it is, what I still stand by

and what still needs to be studied in my opinion and what I'd travel

to hear a researcher explain:

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

" Just like typically developing speech in a child, a child with

apraxia appears from the members of our large Foundation to have

stages they go through -and some children skip one or two -or pass

through some of them quickly or get stuck in one or more of them.

We don't know if all the member's children were properly diagnosed

with apraxia or not, but this may be worth looking into.

OBSERVED APRAXIA STAGES (?) THAT SHOULD BE EXPLORED FURTHER

Stage 1

non verbal stage

Where the child uses one or two sounds to communicate everything with

gestures, and made up elaborate sign. At this stage, depending on

the infant's or child's age you may not be able to diagnose verbal

apraxia, but neurological soft signs should be looked for, as well

as signs of oral motor problems or oral apraxia. An older apraxic

child who is stuck at this stage will be using augmentative devices

and could be at risk for misdiagnosis of cognitive ability if not

tested appropriately.

Stage 2

simple talk stage

Where the child begins to just like a typically developing child

learn new sounds or words, but unlike a typically developing child,

most (not all) appear to forget how to say the sounds or words

again, so they lose that ability to " build " their speech like most

other children do. This is in most cases the only stage that is

acknowledged by ASHA and described by most of the speech

professionals*. Please see examples above (breaks down with

longer utterances, etc.) An older apraxic child who is stuck at

this stage will be using augmentative devices and could be at risk

for misdiagnosis of cognitive ability if not tested appropriately.

Stage 3

Dysfluency stage

Where the child who seemed to be progressing so well suddenly begins

to stutter. Most speech professionals do not consider

classic " stuttering " only a normal developmental dysfluency.

However with apraxic children this stage is especially frustrating

in that if the apraxic child does go through this stage, they appear

to get " stuck " here. In speaking to members from the CHERAB

Foundation who's apraxic child goes through this stage, there is

frequently another member of the family who is a stutterer, which

may mean there is some type of genetic link. Type of therapy to

provide to an apraxic child at this stage that is appropriate is not

clear and depends on which expert you speak to-in some cases there

are direct oppositional views.

Stage 4

Baby Talk stage

Where the child who is now talking and being understood continues to

mix up past and present tense, as well as sentence structure, and

frequently will leave out the " little words " like " the " and " a " .

This may not have anything to do with SLI as discussed above, an

apraxic child typically does keep sentences shorter than average,

but there may be children diagnosed in the SLI area that are

apraxic, and visa versa -and being there is a genetic link

to both SLI as well as apraxia, a closer look needs to be taken at

this stage. A five year old apraxic child who receives appropriate

therapy, including some of the recent discoveries we will talk about

later, may progress faster than previously stated, however just like

in the previous stage, apraxic children also seems to get stuck in

this stage. An example would be " Me want doe too " for " I want to

go too " or " Mommy me walk store too? " for " Mommy can I walk to the

store too? "

Stage 5

Full language stage

Where the child, teenager, or adult apraxic has learned strategies to

overcome the apraxia enough that it's not noticed by the average

listener. However upon closer observation you will notice that an

apraxic in the full language stage will frequently use less

sophisticated language. An example comes in right here. Instead of

saying " an apraxic in the full language stage will frequently use

less sophisticated language " they may say " an apraxic in the full

langwish stage will not sound as grown up most of the time " So in

other words, there will still be words that he or she can not

pronounce correctly, and being aware of them, will avoid them and

substitute when they can. They can be highly intelligent, but due

to their lack of expressing themselves using sophisticated language

at times others may not know this. This is perhaps in some ways

just as frustrating a stage as any other. In some cases maybe more

so because now that they are " talking " and talking fine most of the

time, ASHA professionals may not consider them candidates for

further services. The genetic possibilities and medical involvement

needs to establish these stages, including this one, so the

population can understand and accept this disability just like they

do for those with poor eyes or poor hearing. This is an example of

a late talker that unfortunately for all did not " just start talking "

Stage 1: Most professionals don't know how to diagnose oral or

global apraxia, or diagnose suspected verbal apraxia in this stage.

This is the way almost all professionals as well as online sources

were back in 1999 when Tanner was first diagnosed. If we knew then

what we know today through CHERAB and The Late Talker -Tanner could

have had early intervention from when he first regressed at 11

months old. Can't change that which is sad -but for that reason I

continue to do what I do to raise awareness.

Stage 2: The only stage talked about (and talked about and talked

about) This is what I call the " around the corner " stage which is

covered well...well for the most part -but still the soft signs -the

multifaceted aspects are typically left out by most -soft signs like

the hypotonia, sensory integration dysfunction (called DSI instead

of SID so as not to confuse it with the sudden infant death syndrome

which my oldest son Dakota was at risk for), oral apraxia and other

motor impairments even just mild one in other areas of the body -and

new to our attention stuff like constipation and trouble blowing

their nose on command. Just today Glenn and I were driving the

boys to school and Tanner needed to blow his nose. 'Most' of the

time now today Tanner knows how to blow his nose due to lots of

practice. But like anything with apraxia -most of the time doesn't

necessarily mean all the time. I handed Tanner a tissue and he put

it up to his nose and breathed out through his mouth. I said " No

Tanner -use your nose to breath out silly! " I then helped him and

he breathed out of his nose softly -not enough to do anything. So I

said " OK you have to breath out harder so breath in and then breath

out really deep OK? " Tanner breathed in really deep and when he

went to breath out I took the tissue and really quick stuck it up to

his nose before he could breath out -but that didn't work either

because we both started laughing. Then he sneezed.

Stage 3 and 4 -not all children go through -but too many do to leave

them out, or the child is diagnosed with something else. As I know

with Tanner through Dr. Dale -Tanner's dysfluency stage was

not classic stuttering and as Dr. said " You are correct

that we have done an injustice in not studying apraxia in children

enough yet. For this reason we don't know what is 'normal' for an

apraxic child as to how long they will stay in the developmental

stage of dysfluency, but we are finding it can be quite long "

And Stage 5 -that's the one where parents see their child as " cured "

and even though they may leave the group at stage 3-5 -most leave at

5 not realizing there are strategies for older children/teens and

adults in this stage too.

EFAs speed things up a bit so children may advance quicker -but

again EFAs are not a cure -or not a complete cure. I'd like to add

to that neither is therapy a cure. Apraxia is an impairment that

one can learn to overcome and live a successful life with. Just

like a stutterer -those that don't know may not even be aware there

was any type of impairment of speech.

=====

February 11, 2008

The answers to questions do get repetitive, because these are the

only things that have worked for some people. It is easier to help

someone on the Internet by suggesting fish oil than by telling them

to find a new speech therapist. Really, that is the Holy Grail of

recovery from apraxia. Our awesome SLP (Gwynn at Children's

Specialized Outpatient Center in Hamilton, NJ, for those who care)

used to be on this group ages ago, but she dropped off because she

was tired of everyone hating their SLP's.

Unfortunately, EI wants to charge me $400/month for my " free "

services, and my insurance only covers 20 sessions/year with the

fabulous SLP IF I can massage the codes sufficiently, so I am stuck

looking for other options. I've been trying this and that

biomedically, with many successes, but discovering NACD was like a

gift from God!

in NJ

> >

> > Cincy,

> >

> > I think you missed my point. I'm not againt discussing any

> > intervention, but people need to self regulate. I wouldn't mind a

> > periodic summary of what helped someone's child get better. I

like

> > to know what else is available, but I don't need to hear every

minor

> > detail 20-30 times a day. I don't think many people would be

> > interested in all my seizure disorder discussions even though

that is

> > what caused my son's apraxia. There is a limit to what is

> > appropriate for a particular group. The therapy and IEP questions

> > should not be lost in the shuffle.

> >

> > On most of my lists, people say what helped them and if others are

> > interested they usually join a group that discusses that

intervention

> > in detail.

> >

>

February 11, 2008

I just posted a message to someone saying that if there is no

change in the child in 3 months then the diagnosis, therapy or

therapist needs to be looked at. We do say to find a new therapist

when one isn't working or did I misunderstand you in saying? There

are many people in this group that love their doctors, speech

therapists, teachers and talk about it here just like there are those

that had bad experiences and speak about it here too. There are many

therapists that are members but more used to post back when we spoke

about therapy more.

Speaking of therapy -is this NACD and why do they shine the light in

the child's eyes?!

http://www.youtube.com/watch?v=jCs6IQnwyzI & feature=related

=====

February 11, 2008

I agree with Carolyn. I find great information on this board. Sure there is

stuff that is not for me, but I read and learn about it and it makes me a

better parent.

I started to read 's book in August and she helped me find this site and

meet some really savvy moms and dads.

I was then guided to the folders of 's information on E in addition

to fish oil, mold and yeast. Took it further from there. Saw improvement. I

am also very openminded on suppliments for healing and healing the entire

body for optimal performance. My father was has epilcacy (SP) and has had

horrible food allergies his whole life. When he did bio med 10 + years ago,

it healed HIM. So, I am big on that too. Throughout my " marathon, " (thanks

Janice & Liz for waking me up and getting me moving) I Implemented these

process into my son along with increased therapy in ST (Prompt, Kaufmin Card

and OT). Found out through DAN! (blood tests w/ mainstream Doc) that my son

has aluminum poisioning basically. So I have taken a closer look into our

envrionment, cleaned up the water, cooking organically (most of the time)

and paying attention as best I can to diet.

This is my child and this is what works for him and my family. These are the

avenues I have taken. One does not need to take them nor read my posts. If I

am able to help someone, great. I am not an evangelist, just a mother with a

cause! Most people do the best they can with what they have. That is my

intention. There are times we should celebrate our children and all of our

hard work and dedication to the cause.

Today Charlie is speaking in 4-5 word sentences. We are blessed.

Lets move forward and heal these little guys and gals.

In good health,

Colleen

Mother of Charlie 32 months

Re: [ ] Re: Hijacked list - (was Tanner)

I suppose someone would consider me an old timer. I don't mind at all the

variety of discussions and ideas that are on this list and frankly, the only

time I do get uncomfortable is one someone obviously makes a not so nice

remark

about another poster even if they don't understand themselves that they are

not being so nice.

I have learned a tremendous amount on this list. But if I don't happen to

agree with someone or don't find the information applicable to my child, I

just

delete the post or don't read it based upon the caption; no biggie.

Also, what works for one child, may not work for another. So, I welcome all

ideas and feedback from all parents as to what they did and what did or

didn't

work.

Because of the recent discussion about the NACD, I am looking into it, and

might embark upon that program. But if it were not for a few parents'

encouraging words and feedback about their experiences, I would not be

considering it.

Another benefit of the different ideas is that a parent might read about

another child's experiences or issues and find out that their own child

might

have a sensitivity/allergy to something or perhaps should be evaluated for

seizures or other issues they didn't think about before.

For instance, I know that the discussions on constipation which deal with

overall health, are very helpful in our household.

So, I hope that people tune in to what is applicable to them and have

tolerance for what isn't or what they don't necessarily believe in. Carolyn

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music. <http://music.aol.com/grammys?NCID=aolcmp00300000002565>

aol.com/grammys?NCID=aolcmp00300000002565)

February 11, 2008

I wholeheartedly agree, that when I first joined this list, that I was

overwhelmed... I was even more overwhelmed by the fact that Tanner spoke

so much better than my daughter.. I never thought she had the same

chance as he did, since we were not able to get her qualified for speech

therapy until she was 5. With the help of people on this group and

biomed, my daughter is speaking well enough to be understood about 80%

of the time by strangers... If I am the person people are talking about

posting too much " OT " info, I guess I am not sure why it is OT...

At first, biomed seemed so weird that I thought people were imagining

things... but, when fish oils by themselves help minimally, I knew there

were other things to investigate.

I know that I may be long-winded at times about milk elimination... BUT,

I try to tell WHY I came to the conclusion it was not good for MY

daughter. It wasn't JUST the fish oils or JUST milk elimination. It was

both, along with speech therapy.

ALL kids are different... and people gave me great ideas when I was

struggling the most. I try to do the same when I see a poster with a

problem that seemed similar to mine.

I think all of us are doing our best. I enjoy the biomed discussions,

and why people chose to do them, as I can decide for myself if I think

it may apply to my child.

I have all of my on Digest mode, so I scan the subjects. If

it seems like something I can help with, or am interested in, I respond.

If a person's post does not get answered the first time, I would suggest

they repost it with " REPOST " in the topic, so we know it was skipped

over...

Aubrey

February 11, 2008

I am saddened to see all of these negative posts.

I think that it is important that we all explore with an open mind. I do `get`

what you mean about getting similiar flip answers over and over again for we

look for more of a depth and a sincerity of response rather than an answer that

seems lacking in personal understanding.

One of the things that I would like to comment on is this. I am soooo sorry

that I just followed the mainstream medicine. In actuality my sons deficits did

not appear too bad when he was a little tyke. He had a simple speech dely. We

went to EI, did the early intervention and did speech therapy.

I did EVERYTHING that the specialists advised me to do. One of those things was

to `wait` for him to `grow`out of it. WELL!!! What a horrific mistake this

was!

My son was so sweet, so cheery and so just plain lovable that no one saw or

recognized the issues. We did our EI and we played little tykes soccer. Mark

fit in despite his poor speech. We played hockey (as do most young Canadian

boys) and my son fit in just right. He went to mainstream kindergarten and had

a couple of minor problems but still..... he would `grow`out of it as he

matured. (or so they said)

So in grade 2, they put him in for a 2 month stint at the rehabilitation

hospital (plus school) just to finish him off. But it didn`t finish him off.

He just got worse and worse. The specialists told me that Mark was unresponsive

to OT and that he would no longer be receiving services in the mainstream

education. Yet, they did indicate that he would absolutely grow out of (now we

had a name for it) Developmental Coordination Disorder or Developmental

Dyspraxia..... not too worry.....

But his speech didn`t improve all that much through the years and was still

quite hesitant. We quit hockey, baseball, squash, soccer, swimming one sport at

a time for the other kids just past my beautiful boy by and he could no longer

keep up with his peer group physically..... since my son`s apraxia turned into

global dyspraxia, every thing was affected.

While in grade one and grade two, my sons handwriting was indistinguishable from

his peers, by grade three, they had all past him by and he could no longer keep

up with the demands of the regular classroom. His muscle tone was so poor that

he struggled to keep himself upright in his desk all day. My lovely boy was now

classified as brilliant verbally (his ability to comprehend, read, etc.) but

borderline MR in non-verbal skills such as tying his shoes, cutting, drawing,

writing, etc. We were sent off to Special Education and basicly abandoned there

to rot....

By grade 4, you could pick my son out of a crowd as being `different`. By grade

5, it was the same. By the end of that year, I had discovered the dyspraxia

adults board and realized the truth; my son was not growing out of this thing

and it was taking over his life in an insidious manner.

I now look to every possible therapy that is out there and I am willing to give

it a go! I was so stupid! I trusted those people with the life of my son....

how could I have been so dumb.....

Just to let you know.... my son WAS verbal at 2 and 2.5 but he was not clear

spoken and there were a lot of hesitancies in his sounds.... a lot of aaaaahs

and long pauses where he struggled to speak. He was also verbal at 3, 4, 5, 6,

etc. But he still got bullied daily at school for the first 3 years since he

had issues with drooling. Yet, I have met many, many children who have not

faired as well as him prior to beginning outside therapy. I am quite aware of

my childs intelligence. He is very, very smart. It is just that some of his

systems are not working properly. I did not discover this until it was too

late.

The apraxia is a WARNING BELL. Remember, when you have speech issues, there is

a 90% probablility that you will have other learning differences down the road.

I sincerely hope that every parent out there reads my message. It is not meant

to be pompous nor `know-it-all`. I do not want one other child to go through

what we did. I do not want to see one other child have to be labeled or `stuck`

in a special education environment..... at least not without exploring every

possible avenue beforehand. Had I known back then what I know now, every dime I

had would have gone into private intervention! NOW, I am spending every dime

but alas, the damage has been persistent for a long, long time now and once

done, very difficult to undo.

If your child has hypotonia, low muscle tone...... please, please, please keep

doing therapy when they are young! Please, please, please do not believe that

it is over until you absolutely `KNOW`. I feel that the hypotonia is the worst

as it afffects every part of the body and every ability of your child.

I will now do every therapy, change every thing about my sons diet, work every

angle.....and go to every doctor.... ANYTHING to cure my son, my beloved, my

hero..... with dyspraxia. I made him a promise that he would not have to live

with this forever..... and I shall keep this promise!

So, those of us who are trying every therapy, please be respectful of those

others because this list keeps us all going. Let us not `just`preach a milk

solution or an NACD solution but perhaps make a list of possible solutions that

are more personal. Let us try to give an assortment of ideas rather than just a

pat answer.

Let us not allow our differences to disband us but to unite us! Our kids ARE

different from one another. They are individuals and this is what makes all of

the stories we have so valuable and important.

Before we respond to a post, perhaps it would behoove us to consider whether we

are in a position to truly help this person or not. We should try to draw on

our own personal experiences. Perhaps this might help the environment. Rather

than indicating `try NACD`, perhaps it would be better to list an exercise one

has learned at NACD. This might prove to be a more productive solution and more

personal.....

I thank that lord daily for this list! Without it, I never would have realized

that my son had such extensive food sensitivities or realized that he was not

absorbing foods properly. I would never have gotten metabolic testing performed

nor would we have done metals testing. I would not have tried vitamin E nor

would I have tried the fish oils again (we did them once years ago but my boy

had absorbtion issues).

I knew my therapy but I did not understand the full scope of apraxia and

dyspraxia. Because this list is uncensored and lets the conversations roam

where they might, I have learned a tremendous amount of knowledge and read some

pretty good books!

Thank you, thank you and thank you some more. I spent 13 years wandering

through dyspraxia in lonliness (my husband left years ago)..... until I found

all of you! I simply don`t know what I would do without you.

You All are my sanity!

Janice

Mother of Mark, 13

[sPAM][ ] Re: Hijacked list - (was Tanner)