Re: Hijacked list - (was Tanner)

February 11, 2008

For me personally the thing I spent the most money on was supplements

I was too afrid to try. Nutrient dense food is as costly as the old

diet and we need less of it so it evens out. The DAN was really just

a regular doc who ran lanbs the other mainstream docs would not at a

mainstream lab. He took insurance. I still am uncomfortable with all

of this. For me I just want to learn and talking is how I do that. I

really meant what I said in an old post: we are all doing what is

best for our kids and that is only for us to decide as individuals.

If I have been part of a divide I can only sincerely apologize. It

was not my intent. This is a great list. has it right. It is

about the kids.

>

> I don't think people are necessary " offended " by the biomed talk.

> Obviously fish oils and vit E are biomedical interventions. From my

> point of view I am not offended by or " put off " by the TALK of

biomed

> interventions. My only concern about the direction of this group is

> that it has become so one-sided that I think most newcomers may get

> the impression that major lifestyle changes and huge financial

> commitments are the ONLY way to see progress in their

child/children.

>

> I would strongly suggest that we, as a group, keep in mind that many

> parents simply do not have the means to pursue the HUGE list of

other

> options that are often listed as a first course of action in this

> group. I know many people have cited cost as a reason for why they

> have not pursued DAN and long lists of other pricey options. When

> people cite those reasons the response is almost always something

> along the lines of " my child is worth it " or " we don't have the

money

> either, but we find a way for our child " , etc. Unfortunately, that

> may leave the parent who doesn't sacrifice everything feeling like a

> failure as a parent. I spent many sleepless nights laying in bed

> feeling like a terrible mother trying to figure out how I was going

to

> talk my husband into us spending all of our savings on the

biomedical

> interventions being discussed on here (and my son was not even 2.5

> then). In the end, my dh and I agreed that if we did not see

> significant improvement by age 4 or 4.5 we'd pull out of our savings

> and pursue those other options. I really am glad we did not put

> further stress into our marriage and whole family by spending

> thousands of dollars. Seeing his wonderful progress now makes me

> laugh a little at the thought of me taking all the money out of his

> college fund just to pay for stuff that he doesn't seem to even

need.

>

> I do have a point to all this....I think it's great that every

> alternative is at least discussed and brought to light. Bouncing

> ideas off one another may be the single most important way we help

our

> children and future children that struggle to learn to speak. But,

I

> hope everyone would agree that the easiest and least expensive

options

> should be explored first and then it can progress from there. I

know

> that as parents of late-talkers we get tired of hearing it, but it

> really is true that some kids just need extra time and extra help

from

> a good SLP. I think it would be a shame that parents of a

> late-talking barely 2 yr old might join this group and then suddenly

> feel panicked into diving head-first into thousands of dollars of

> biomed interventions when in reality all the child needed was time

and

> therapy. I just feel that, with all things in life, there needs to

be

> a balance. Maybe the lack of balance is just as much my fault and

> others that have feelings similar to mine. But, in my defense, the

> reason I don't really express my opposing point of view is because

of

> huge feelings of guilt. I have beat myself up so many times about

how

> I must not be as good a mom as so many on here because I've been

> hesitant to make the same sacrifices. Does that mean I don't care

> about my son? Does that mean I'm too selfish to help my son? No

one

> on here has made me feel that way because only I have control over

my

> feelings. But, I will say that the tone of many posts has not

helped

> at all. I have read more than once things like " yes, eliminating

> dairy and gluten is hard work but I do it for my son " . You can see

> how one could read between the lines and hear " if you really wanted

to

> help your son you would do the hard work necessary to eliminate

gluten

> and casein, too " .

>

> I sure hope this comes across the way I intend it to. I'm NOT

trying

> to offend anyone. I have read alot of the biomed info with great

> interest and have it all filed away in my head for a day I may see

the

> need to use it. But, I would be thrilled to also hear more

> discussions about what kind of speech therapy is working. And, I

> guess to just be able to talk about all the cool little things that

> make our kids unique and special and wonderful. Wouldn't it be nice

> to just celebrate our kids sometimes instead of spending every

moment

> trying to " fix " them? Maybe I'm also just being a little

sentimental

> since today is my son's 3rd birthday. They really do grow up so

fast!!

>

> Bridget

February 11, 2008

The answers also seem repetitive due to the lag time of when they

actully post to the board...so more people answer the same question.

I've also noticed if you reply using the same subject line the

message posts quicker than if you customize the subject line (which

in my opinion makes for an easier read/digest). If you customize the

subject line your message is even more delayed.

Not trying to step on any toes here...just some observations.

Stephanee

> > >

> > > 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'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.

>

Hey I absolutely agree with that ! We should def try and be

sensitive to helping people with their question/issue in a way that

would be helpful and is relevant. Good point ! )

February 11, 2008

Yes, you did misunderstand me.

My post: " It is easier to help someone on the Internet by suggesting

fish oil than by telling them to find a new speech therapist. "

What I meant was that I can recommend to you right now, today, to go

buy Nordic Naturals Omega 3-6-9 fish oil and you will probably be

able to buy it. However, for most people (this list is

international) I can't help them find a new or better SLP, even

though that is probably the most important part of their treatment

plan. My point is that the internet is better suited for

recommendations that are specific ( " this supplement helped my child "

vs. general ( " it sounds like your SLP doesn't know anything about

apraxia " ).

Regarding the NACD video, I have no idea what they are doing with

that light. Definitely not on our program. Some kids with autism

favor their peripheral vision (hence the bad eye contact), so perhaps

they are trying to change that. Who knows? If you would like to see

a sampling of 's NACD program, I would be happy to mail you a

video. (I can't upload, as our camera is old.) Tyler, the baby,

will be getting one with speech stuff, so that one might be more

interesting to you. He goes to the NACD at the end of the month for

the first time.

in NJ

>

> 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 12, 2008

Liz, I just wanted to say that I, as an old timer here, have found your

posts informative and for reasons stated in my post of yesterday, have no

problem

with the biomed discussions, NACD, etc. In fact, all interventions, even

fish oils, need to be assessed individually and in my opinion, discussed with a

physician just in case there is some particular reason why the intervention

may affect your child differently. For instance, there is plenty of debate in

the scientific community about omega 6 and its effect on children with

epilepsy. Some say omega 3 is the way to go because the 6 might encourage

seizures

in children prone to them, some say the combination of 3 and 6 is needed,

etc. I only know this because my daughter has seizures and I have discussed

this

with the neurologists. Now, this finding may seem odd to some, but every

child is different, and some interventions aren't right for every child. We

tried the casein and gluten free diet years ago and found no positive results.

However, I truly believe that this diet has tremendously helped so many children

and respect those who continue to mention it.

I have never felt any pressure from any poster to do any particular

intervention. I think people just need to respect others and understand that as

time

goes on, there will always be new ideas, and that is what makes any list a

good list. 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 12, 2008

Clearly there are things that need to be addressed here. None of us

wants a new mom turned off, delving into supplements and more

unsupervised, etc. None of this organization is within the power of

the people talking about it. If I knew how to do it I'd want to help

because I feel like I had a part in this discord. But I declined a

moderator request here and even if it were reoffered I don't think I

am up to it for the same reasons I declined. At the end of the day

maybe the answer is, please look at the apraxia labs in the folder

and get them for your kid. At least then someone would know where to

start.

I became a moderator on another list, apraxiabiomed, and I now see

all the organizational possibilities, and still how frightening this

can be. Maybe it really is time to just cook, therapize, etc. On top

of this the group leader of my in person group is making suggestions

that other people use the mercury/lead chelation tea she is using

because her daughter is doing so well. Well, could that be from the

safe protocol and good diet she has been using for months? Also, she

never told the doc she was doing this. Even if it is the tea and if

the tea is working how does she know she won't throw that kid into

diabetes? I went to this in person group for support...you know...my

kid is doing great and people are giving me a hard time, my family is

not supporting me, that kind of stuff. Not to watch someone lead

others into a scary place. She then saw fit to do this on the day

someone in our group discovered their second child was affected.

That as not what I was trying to do here. I did a diet, told the

story. I saw mainstream docs and told the story. I saw a Dan, told

the story. How did we get here?

> > > >

> > > > 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 12, 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.

> > > > >

> > > >

> > >

> >

Hi all,

Jeanne here. I have been here for a long time and even though I am

one of the moderators here I don't always post that often. I just

wanted to put my 2 cents in on this topic. Everyone is different and

is entitled to their opinion of different therapies,or treatments

here. But-- I wanted to stress something that is very important.

Just because we are able to express ourselves here freely doesn't

mean that what works or doesn't work for your child - should be

written in a way that's intimidating others by your postings. I

don't mean to be critical, but it isn't a tennis match with opponents

batting the ball back and forth over the fence at each other!! Many

new people come onto this list who are scared and panicked about

their child and they are looking for support and information and new

member basic information and instead can be made more scared or

panicked when they read some of the things that are said and don't

know what to think. Many of these new parents have read The Late

Talker and are looking for more information about what is in that

book. That is what I liked about this group from when I first found

it years ago and it's always been a great support for me as well as

my nonprofit Apraxia Network of Bergen County. .

Many of you know that I have two son's with different diagnosis's one

with apraxia and one with high functioning autism. They are both

different children with different diagnosis so I don't expect what

works for one to work for the other so I certainly wouldn't impose on

someone what is right or wrong for their child. Just because you may

have an strong opinion or have different therapies doesn't mean the

shoe fits and all should wear it..and that if they don't wear it that

you have the right to kick them. Like said when we all used to

meet in person we saw what worked for most and that is one of the

reasons that The Late Talker was written.

Jeanne

February 12, 2008

Jeanne thanks for posting your thoughts. For those that don't know

who this is please read this article she wrote

http://findarticles.com/p/articles/mi_go2827/is_200202/ai_n6792565

Jeanne's first son died of cancer at 4, her middle son has apraxia

and ADHD and her youngest has autism.

She has learned her wisdom the very hard way.

=====

February 12, 2008

I stopped reading and posting a lot a couple of months ago because it

was so negative. I occasionally chime in now when I happen to see a post.

I am still amazed at what I have learned from this board. I NEVER

would have intentionally gone dairy free if it hadn't been for the

posts here combined with a lead teaching ped recommendation. My

middle son had HUGE drool issues. He has ruined so many tops because

he wouldn't keep a bib on. By going Dairy free, the DROOL issues have

gone away. Along with the weekly dr visits and monthly ER visits for

upper resp. distress. He is 1 of 4 kids. I have found positives from

3 of the 4 kids by going dairy free. Is it an easy transition? NOPE

but I firmly believe that is is one of the cheapest and easiest things

to TRY. You will know pretty quickly if your child benefits or not.

You may not see the absolute best results if you switch to Soy milk.

To be fair - we were seeing progress when we were still on dairy with

our apraxic child. What has just AMAZED me is the GIGANTIC steps

forward he has taken in his clarity of speech and intonation since

being consistently dairy free. His focus is better, the therapy

" takes " better not to mention his bladder control/bm's are " better " We

have tested this several times because going dairy free was a HUGE

paradigm shift for our family. My best friend from high school lived

on a dairy farm , we used to drink milk from the bulk tank.

Gigantic steps forward - he could barely sing " happy birthday " in

July. His MLU was 2.5 now his MLU is 5.7 and growing. We went all

out dairy free in September.

I am not sure on the science of why dairy free is working for our

family. I only know it works and I will continue to " shout it from

the mountain top! "

Another thing that just surprises me is that people are asking for and

taking medical advice from complete strangers who have never even met

their child. I would hope that all parents are doing a self " reality

check " on the advice given.

One more thing... Thank you to the parents of older kids for posting

how your child seemed to " grow into " more apraxia/disabilities.

Strangely, the same thing is happening to us but rather than wait, we

are hitting it hard with more therapy.

The keys to success we have found have been

1. Great SLP, OT

2. Dietary intervention

3. Supplementation

4. Listening program

5. innovative therpies

This is hard hard work but we are starting to see the results. My

original goal had been that he would start K on time but now he is

being held back a year and will go to a more intensive private

preschool next year instead. Homeschooling isn't an option right now

but I like to learn more as it may become one in the future.

> >

> > I don't think people are necessary " offended " by the biomed talk.

> > Obviously fish oils and vit E are biomedical interventions. From my

> > point of view I am not offended by or " put off " by the TALK of

> biomed

> > interventions. My only concern about the direction of this group is

> > that it has become so one-sided that I think most newcomers may get

> > the impression that major lifestyle changes and huge financial

> > commitments are the ONLY way to see progress in their

> child/children.

> >

> > I would strongly suggest that we, as a group, keep in mind that many

> > parents simply do not have the means to pursue the HUGE list of

> other

> > options that are often listed as a first course of action in this

> > group. I know many people have cited cost as a reason for why they

> > have not pursued DAN and long lists of other pricey options. When

> > people cite those reasons the response is almost always something

> > along the lines of " my child is worth it " or " we don't have the

> money

> > either, but we find a way for our child " , etc. Unfortunately, that

> > may leave the parent who doesn't sacrifice everything feeling like a

> > failure as a parent. I spent many sleepless nights laying in bed

> > feeling like a terrible mother trying to figure out how I was going

> to

> > talk my husband into us spending all of our savings on the

> biomedical

> > interventions being discussed on here (and my son was not even 2.5

> > then). In the end, my dh and I agreed that if we did not see

> > significant improvement by age 4 or 4.5 we'd pull out of our savings

> > and pursue those other options. I really am glad we did not put

> > further stress into our marriage and whole family by spending

> > thousands of dollars. Seeing his wonderful progress now makes me

> > laugh a little at the thought of me taking all the money out of his

> > college fund just to pay for stuff that he doesn't seem to even

> need.

> >

> > I do have a point to all this....I think it's great that every

> > alternative is at least discussed and brought to light. Bouncing

> > ideas off one another may be the single most important way we help

> our

> > children and future children that struggle to learn to speak. But,

> I

> > hope everyone would agree that the easiest and least expensive

> options

> > should be explored first and then it can progress from there. I

> know

> > that as parents of late-talkers we get tired of hearing it, but it

> > really is true that some kids just need extra time and extra help

> from

> > a good SLP. I think it would be a shame that parents of a

> > late-talking barely 2 yr old might join this group and then suddenly

> > feel panicked into diving head-first into thousands of dollars of

> > biomed interventions when in reality all the child needed was time

> and

> > therapy. I just feel that, with all things in life, there needs to

> be

> > a balance. Maybe the lack of balance is just as much my fault and

> > others that have feelings similar to mine. But, in my defense, the

> > reason I don't really express my opposing point of view is because

> of

> > huge feelings of guilt. I have beat myself up so many times about

> how

> > I must not be as good a mom as so many on here because I've been

> > hesitant to make the same sacrifices. Does that mean I don't care

> > about my son? Does that mean I'm too selfish to help my son? No

> one

> > on here has made me feel that way because only I have control over

> my

> > feelings. But, I will say that the tone of many posts has not

> helped

> > at all. I have read more than once things like " yes, eliminating

> > dairy and gluten is hard work but I do it for my son " . You can see

> > how one could read between the lines and hear " if you really wanted

> to

> > help your son you would do the hard work necessary to eliminate

> gluten

> > and casein, too " .

> >

> > I sure hope this comes across the way I intend it to. I'm NOT

> trying

> > to offend anyone. I have read alot of the biomed info with great

> > interest and have it all filed away in my head for a day I may see

> the

> > need to use it. But, I would be thrilled to also hear more

> > discussions about what kind of speech therapy is working. And, I

> > guess to just be able to talk about all the cool little things that

> > make our kids unique and special and wonderful. Wouldn't it be nice

> > to just celebrate our kids sometimes instead of spending every

> moment

> > trying to " fix " them? Maybe I'm also just being a little

> sentimental

> > since today is my son's 3rd birthday. They really do grow up so

> fast!!

> >

> > Bridget

>

February 12, 2008

Janice I am new to this website, but you have just described my 12 year old

daughter perfectly. Only just recently the neurologist noticed iregularities in

her blood work. We have been tested many times. My husband, and I have sought

lots of therapy, and done alot of therapy ourselves.

We have done TLP, vision therapy, OT, PT, Speech, and FastForword. I have to

say each of these has helped her tremendously. I can't say she is healed, but

does communicate, and is fairly happy.

I'm wondering what has been most helpful to your child. Please share, so that

I know what path to take.

We have just started L-Carnitine, and I do notice a change in her

understandability. She is also much calmer. Most of the posts I've read talk

more about carnosine.

Thanks for any help you can offer.

Jo

Annie's Mom

Janice <jscott@...> wrote:

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)

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 12, 2008

Are you saying he had chronic diarrhea on milk and only constipation

after milk loss?

> > >

> > > I don't think people are necessary " offended " by the biomed

talk.

> > > Obviously fish oils and vit E are biomedical interventions.

From my

> > > point of view I am not offended by or " put off " by the TALK of

> > biomed

> > > interventions. My only concern about the direction of this

group is

> > > that it has become so one-sided that I think most newcomers

may get

> > > the impression that major lifestyle changes and huge financial

> > > commitments are the ONLY way to see progress in their

> > child/children.

> > >

> > > I would strongly suggest that we, as a group, keep in mind

that many

> > > parents simply do not have the means to pursue the HUGE list

of

> > other

> > > options that are often listed as a first course of action in

this

> > > group. I know many people have cited cost as a reason for why

they

> > > have not pursued DAN and long lists of other pricey options.

When

> > > people cite those reasons the response is almost always

something

> > > along the lines of " my child is worth it " or " we don't have

the

> > money

> > > either, but we find a way for our child " , etc. Unfortunately,

that

> > > may leave the parent who doesn't sacrifice everything feeling

like a

> > > failure as a parent. I spent many sleepless nights laying in

bed

> > > feeling like a terrible mother trying to figure out how I was

going

> > to

> > > talk my husband into us spending all of our savings on the

> > biomedical

> > > interventions being discussed on here (and my son was not

even 2.5

> > > then). In the end, my dh and I agreed that if we did not see

> > > significant improvement by age 4 or 4.5 we'd pull out of our

savings

> > > and pursue those other options. I really am glad we did not

put

> > > further stress into our marriage and whole family by spending

> > > thousands of dollars. Seeing his wonderful progress now makes

me

> > > laugh a little at the thought of me taking all the money out

of his

> > > college fund just to pay for stuff that he doesn't seem to

even

> > need.

> > >

> > > I do have a point to all this....I think it's great that every

> > > alternative is at least discussed and brought to light.

Bouncing

> > > ideas off one another may be the single most important way we

help

> > our

> > > children and future children that struggle to learn to speak.

But,

> > I

> > > hope everyone would agree that the easiest and least expensive

> > options

> > > should be explored first and then it can progress from there.

I

> > know

> > > that as parents of late-talkers we get tired of hearing it,

but it

> > > really is true that some kids just need extra time and extra

help

> > from

> > > a good SLP. I think it would be a shame that parents of a

> > > late-talking barely 2 yr old might join this group and then

suddenly

> > > feel panicked into diving head-first into thousands of

dollars of

> > > biomed interventions when in reality all the child needed was

time

> > and

> > > therapy. I just feel that, with all things in life, there

needs to

> > be

> > > a balance. Maybe the lack of balance is just as much my fault

and

> > > others that have feelings similar to mine. But, in my

defense, the

> > > reason I don't really express my opposing point of view is

because

> > of

> > > huge feelings of guilt. I have beat myself up so many times

about

> > how

> > > I must not be as good a mom as so many on here because I've

been

> > > hesitant to make the same sacrifices. Does that mean I don't

care

> > > about my son? Does that mean I'm too selfish to help my son?

No

> > one

> > > on here has made me feel that way because only I have control

over

> > my

> > > feelings. But, I will say that the tone of many posts has not

> > helped

> > > at all. I have read more than once things like " yes,

eliminating

> > > dairy and gluten is hard work but I do it for my son " . You

can see

> > > how one could read between the lines and hear " if you really

wanted

> > to

> > > help your son you would do the hard work necessary to

eliminate

> > gluten

> > > and casein, too " .

> > >

> > > I sure hope this comes across the way I intend it to. I'm NOT

> > trying

> > > to offend anyone. I have read alot of the biomed info with

great

> > > interest and have it all filed away in my head for a day I

may see

> > the

> > > need to use it. But, I would be thrilled to also hear more

> > > discussions about what kind of speech therapy is working.

And, I

> > > guess to just be able to talk about all the cool little

things that

> > > make our kids unique and special and wonderful. Wouldn't it

be nice

> > > to just celebrate our kids sometimes instead of spending every

> > moment

> > > trying to " fix " them? Maybe I'm also just being a little

> > sentimental

> > > since today is my son's 3rd birthday. They really do grow up

so

> > fast!!

> > >

> > > Bridget

> >

>

February 12, 2008

Can you please tell me about how one knows to do L Carnitine.

tested fine initially (in May) but we have had a lot of changes since

then and plan to retest. I can't recall though if this is one of

those things where blood levels don't show all. Please understand I

would only do this under a mainstream physicians care so I am not

asking you to be my doc.

> >

> > 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 12, 2008

The Late Talker needs to be updated.

> > > > > >

> > > > > > 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.

> > > > > >

> > > > >

> > > >

> > >

>

> Hi all,

>

> Jeanne here. I have been here for a long time and even though I am

> one of the moderators here I don't always post that often. I just

> wanted to put my 2 cents in on this topic. Everyone is different

and

> is entitled to their opinion of different therapies,or treatments

> here. But-- I wanted to stress something that is very important.

> Just because we are able to express ourselves here freely doesn't

> mean that what works or doesn't work for your child - should be

> written in a way that's intimidating others by your postings. I

> don't mean to be critical, but it isn't a tennis match with

opponents

> batting the ball back and forth over the fence at each other!! Many

> new people come onto this list who are scared and panicked about

> their child and they are looking for support and information and

new

> member basic information and instead can be made more scared or

> panicked when they read some of the things that are said and don't

> know what to think. Many of these new parents have read The Late

> Talker and are looking for more information about what is in that

> book. That is what I liked about this group from when I first

found

> it years ago and it's always been a great support for me as well as

> my nonprofit Apraxia Network of Bergen County. .

>

> Many of you know that I have two son's with different diagnosis's

one

> with apraxia and one with high functioning autism. They are both

> different children with different diagnosis so I don't expect what

> works for one to work for the other so I certainly wouldn't impose

on

> someone what is right or wrong for their child. Just because you

may

> have an strong opinion or have different therapies doesn't mean the

> shoe fits and all should wear it..and that if they don't wear it

that

> you have the right to kick them. Like said when we all used to

> meet in person we saw what worked for most and that is one of the

> reasons that The Late Talker was written.

>

> Jeanne

>

February 12, 2008

Let me tell you.....

The decision to go dairy free for us was easy. When you have a child who has

gotten picked on, abused and otherwise asaulted `DAILY` because of his drooling

issue..... you will do absolutely anything to fix it!

While we did `teach` Mark not to drool in grades 2 & 3, he still had an issue

with extra saliva in his mouth and had to `focus`on swallowing in order to keep

from drooling. It was a nightmare for him! In addition, his voice was always

slushy. This did not go away on its own! Mark was 11 years old before we went

milk free (slightly) and 12 before we got serious about it. Until he was off

the milk a couple of months, those aweful saliva issues remained!

Think about it.... a drooling 11 year old! The child was almost grown to an

adult for goodness sake.....

All of this got eliminated with the milk! Years of social stigma and emotional

pain were eradicated via this one act.....

The bonus was that my son stopped having chronic diarhea!

I tried to get Mark to eat some cheese the other day and told him that we should

give it a go since his body has been so healthy lately. Not a chance! He is

simply not interested in the stuff. (yet he does eat it with the occasional

pizza)

Note that my child does fine with gluten..... (he also is okay with most

cheeses; he is just paranoid!) so if you are having this issue and it is making

your life miserable.... do give milk free a try!

Thus we all share our ideas for what works for one..... just might be a

`life-saver`for many! I am here because I want so much to tell everyone.... the

child you see at 6 does not change without help.... once those neural pathways

are set, they require intensive therapy or intervention to change. If there is

an environmental insult like milk (an intolerance for us) or an allergen....

whatever system it is affecting does NOT get better unless the substance is

removed. Thus it is definately up to us to determine which `things`are

affecting the development of our beloved babies.

I love this list. It is my haven.....

I am glad we can just open up and be ourselves.... that there are no rules or

regulations other than kindness. It allows us to get to know each other on a

much more personal level than many of the other boards. I had a call this

weekend from a New Jersey mom while I was in Banff, AB on a weekend getaway

(from the kids)..... we had never met yet I had felt a kinship beyond words.....

it was wonderful!

I have too many favorite therapies to list for having `global`dyspraxia or

apraxia means that every muscle group in the body requires therapy in order to

work properly.... not just the speech. Thus, the list is extensive.