Re: need advice, cheering up, anything

[Guest guest]

My goodness. What do you say to that other than I'll pray for you. I

wish the DAN system was organized better and infiltrated regular life

more so that folks in this spot had some sort of medicaid type help.

>

> Hi, all. I have so enjoyed learning and suffering and celebrating

> with all of you, even though I am usually just a lurker. My own ds

> is still fighting his apraxia/low tone. He was off the chart with

> aluminum, antimony, and lead--but that's getting better. We are

> GF/CF almost two years now. He'll be 3 in March. We have done two

> years of cranio-sacral, chelated for a year, done B-12 injections a

> year, changed cooking pots, clothing, bedding, air filtering, clay

> baths, chiropractic, massive fish oil/B vitamin etc. supplements,

and

> still he's only labeling. His SLP says he'll really talk at some

> point, and he doesn't need augmentative communication, but I am

> getting desperate. He's done 20 hyperbaric dives in a hard chamber

> at 1.5 ATA with 100% oxygen (in process for 40 by month's end) and

> he's not improved at all. His DAN said he'd be a great candidate

for

> improvement given his profile (as did the SLP and O/T). And

> nothing. I feel we are doomed. I am so upset at this point--

> insurance won't pay for the hyperbarics (or anything else) and I am

> broke and my kid still can't talk. He's in another city where the

> hyperbaric doc is and staying with my folks, so I can't even see

him

> but on weekends (I have to stay here and work 2 jobs just to keep

the

> bills somewhat paid.) Any suggestions for something to help this

> kid? Any ideas? Just a shoulder to cry on? Thank you all for

> everything you do and share on the board. You are like second

family.

>

[Guest guest]

What a steady navigator you are Janice. So smart. You have done it

all and support those of us behind you in so many ways. Thankyou!

>

> Not that you need to spend more money.... but have you tried any

form of TLP, tomatis, Berrard or any type of auditory integration

therapy? I think that you need to stimulate this little ones ears but

don't spend any money right now.... use a stereo in the house.... in

his bedroom and play some Mozart before bed and upon wakening.

>

> I would like you to buy this book from Glen Doman before you spend

another dime and read it. It talks about the senses, stimulating the

senses and getting them going. It is a bit historical and such but I

want you to take a moment..... a pause..... go back to the basics and

read.

>

> The book I want you to buy is by Glen Doman and it is called " What

to do about Your Brain-Injured Child: Or Your Brain-Damaged,

Mentally Retarded, Mentally Deficient, Cerebral-Palsied, Spatic,

Flaccid, Rigid, Epileptic, ... Athetoid, Hyperactive, Down's Child "

>

> This is a necessary primer and a invaluable tool toward

understanind how the brain works, how we go about developing

language, communication. How we learn to walk, to move, to run.

What happens inside of us.... ignore the toxins and the heavy metals

for a minute and just get back to 'brain basics'.

>

> Just close your eyes and rest..... just for a moment. See your son

talking, running, laughing with friends 10 years from now.... That is

my boy today.... running, walking, talking and laughing with

friends.... fighting off the agressive girls of grade 7 and laughing

about it with his buddies.... .

>

> Now.... my son was your son.... he had a few words at three but not

many and they certainly were not intelligeable. In addition, I am

just beginning the chelation process right now and it is still

working for him. So, breathe.... just for a moment, know in your

heart that he will get better. My boy is your boy in 10 years....

close your eyes and hold onto this vision. See it, believe in it

and 'know it' in your heart. Just know...

>

> Lose the desparation for that combined with worry is a poisen that

does nothing but hurt your body and get in the way of healing.

>

> I can feel your desparation and so can your son. Your anxiety is

his anxiety. I can also feel your unwavering love, committment and I

am so utterly humbled by your courage.

>

> I also want you to consider the childhood that you are missing and

the life that you are giving up in yourself by working so hard. If

you do not take care of yourself, slow down and remove just a bit of

pressure, then you may fall ill and then where will your son be?

>

> Think about going back to the basics and working the therapy for a

little while. Get the book, read it and write back what you think

and what you observe with your boy.

>

> Take care.... we are here for you.

>

> Janice

> Mother of Mark, 13

>

>

>

> [sPAM][ ] need advice, cheering up,

anything

>

>

> Hi, all. I have so enjoyed learning and suffering and celebrating

> with all of you, even though I am usually just a lurker. My own

ds

> is still fighting his apraxia/low tone. He was off the chart with

> aluminum, antimony, and lead--but that's getting better. We are

> GF/CF almost two years now. He'll be 3 in March. We have done two

> years of cranio-sacral, chelated for a year, done B-12 injections

a

> year, changed cooking pots, clothing, bedding, air filtering,

clay

> baths, chiropractic, massive fish oil/B vitamin etc. supplements,

and

> still he's only labeling. His SLP says he'll really talk at some

> point, and he doesn't need augmentative communication, but I am

> getting desperate. He's done 20 hyperbaric dives in a hard

chamber

> at 1.5 ATA with 100% oxygen (in process for 40 by month's end)

and

> he's not improved at all. His DAN said he'd be a great candidate

for

> improvement given his profile (as did the SLP and O/T). And

> nothing. I feel we are doomed. I am so upset at this point--

> insurance won't pay for the hyperbarics (or anything else) and I

am

> broke and my kid still can't talk. He's in another city where the

> hyperbaric doc is and staying with my folks, so I can't even see

him

> but on weekends (I have to stay here and work 2 jobs just to keep

the

> bills somewhat paid.) Any suggestions for something to help this

> kid? Any ideas? Just a shoulder to cry on? Thank you all for

> everything you do and share on the board. You are like second

family.

>

>

>

>

>

>

[Guest guest]

Not that you need to spend more money.... but have you tried any form of TLP,

tomatis, Berrard or any type of auditory integration therapy? I think that you

need to stimulate this little ones ears but don't spend any money right now....

use a stereo in the house.... in his bedroom and play some Mozart before bed and

upon wakening.

I would like you to buy this book from Glen Doman before you spend another dime

and read it. It talks about the senses, stimulating the senses and getting them

going. It is a bit historical and such but I want you to take a moment..... a

pause..... go back to the basics and read.

The book I want you to buy is by Glen Doman and it is called " What to do about

Your Brain-Injured Child: Or Your Brain-Damaged, Mentally Retarded, Mentally

Deficient, Cerebral-Palsied, Spatic, Flaccid, Rigid, Epileptic, ... Athetoid,

Hyperactive, Down's Child "

This is a necessary primer and a invaluable tool toward understanind how the

brain works, how we go about developing language, communication. How we learn

to walk, to move, to run. What happens inside of us.... ignore the toxins and

the heavy metals for a minute and just get back to 'brain basics'.

Just close your eyes and rest..... just for a moment. See your son talking,

running, laughing with friends 10 years from now.... That is my boy today....

running, walking, talking and laughing with friends.... fighting off the

agressive girls of grade 7 and laughing about it with his buddies.... .

Now.... my son was your son.... he had a few words at three but not many and

they certainly were not intelligeable. In addition, I am just beginning the

chelation process right now and it is still working for him. So, breathe....

just for a moment, know in your heart that he will get better. My boy is your

boy in 10 years.... close your eyes and hold onto this vision. See it, believe

in it and 'know it' in your heart. Just know...

Lose the desparation for that combined with worry is a poisen that does nothing

but hurt your body and get in the way of healing.

I can feel your desparation and so can your son. Your anxiety is his anxiety.

I can also feel your unwavering love, committment and I am so utterly humbled by

your courage.

I also want you to consider the childhood that you are missing and the life that

you are giving up in yourself by working so hard. If you do not take care of

yourself, slow down and remove just a bit of pressure, then you may fall ill and

then where will your son be?

Think about going back to the basics and working the therapy for a little while.

Get the book, read it and write back what you think and what you observe with

your boy.

Take care.... we are here for you.

Janice

Mother of Mark, 13

[sPAM][ ] need advice, cheering up, anything

Hi, all. I have so enjoyed learning and suffering and celebrating

with all of you, even though I am usually just a lurker. My own ds

is still fighting his apraxia/low tone. He was off the chart with

aluminum, antimony, and lead--but that's getting better. We are

GF/CF almost two years now. He'll be 3 in March. We have done two

years of cranio-sacral, chelated for a year, done B-12 injections a

year, changed cooking pots, clothing, bedding, air filtering, clay

baths, chiropractic, massive fish oil/B vitamin etc. supplements, and

still he's only labeling. His SLP says he'll really talk at some

point, and he doesn't need augmentative communication, but I am

getting desperate. He's done 20 hyperbaric dives in a hard chamber

at 1.5 ATA with 100% oxygen (in process for 40 by month's end) and

he's not improved at all. His DAN said he'd be a great candidate for

improvement given his profile (as did the SLP and O/T). And

nothing. I feel we are doomed. I am so upset at this point--

insurance won't pay for the hyperbarics (or anything else) and I am

broke and my kid still can't talk. He's in another city where the

hyperbaric doc is and staying with my folks, so I can't even see him

but on weekends (I have to stay here and work 2 jobs just to keep the

bills somewhat paid.) Any suggestions for something to help this

kid? Any ideas? Just a shoulder to cry on? Thank you all for

everything you do and share on the board. You are like second family.

[Guest guest]

Thank all of you who have written with advice and cheerfulness. I am

so " into " this that forest and trees get very blurred. It's so

wonderful to hear that there are children who have beat this! And

yes, I do mourn for my son's lost babyhood and the childhood he is

losing. All of those " normal " moments are gobbled up in an unending

sea of therapy and meds. I know very well it could be much worse, but

it's still pretty awful. Thank you all again for the encouragement.

I'm going to buy that book. You are all a godsend.

[Guest guest]

Please realize that there is a reason you are that child's parent. Most

parents would not even to attempt, let alone complete the intense therapy,

research, time, MONEY, and dedication as you continue to do. If noting else

works at this moment, take a breather. Happiness is right around the corner.

We are here to help.

[ ] Re: need advice, cheering up, anything

My goodness. What do you say to that other than I'll pray for you. I

wish the DAN system was organized better and infiltrated regular life

more so that folks in this spot had some sort of medicaid type help.

>

> Hi, all. I have so enjoyed learning and suffering and celebrating

> with all of you, even though I am usually just a lurker. My own ds

> is still fighting his apraxia/low tone. He was off the chart with

> aluminum, antimony, and lead--but that's getting better. We are

> GF/CF almost two years now. He'll be 3 in March. We have done two

> years of cranio-sacral, chelated for a year, done B-12 injections a

> year, changed cooking pots, clothing, bedding, air filtering, clay

> baths, chiropractic, massive fish oil/B vitamin etc. supplements,

and

> still he's only labeling. His SLP says he'll really talk at some

> point, and he doesn't need augmentative communication, but I am

> getting desperate. He's done 20 hyperbaric dives in a hard chamber

> at 1.5 ATA with 100% oxygen (in process for 40 by month's end) and

> he's not improved at all. His DAN said he'd be a great candidate

for

> improvement given his profile (as did the SLP and O/T). And

> nothing. I feel we are doomed. I am so upset at this point--

> insurance won't pay for the hyperbarics (or anything else) and I am

> broke and my kid still can't talk. He's in another city where the

> hyperbaric doc is and staying with my folks, so I can't even see

him

> but on weekends (I have to stay here and work 2 jobs just to keep

the

> bills somewhat paid.) Any suggestions for something to help this

> kid? Any ideas? Just a shoulder to cry on? Thank you all for

> everything you do and share on the board. You are like second

family.

>

[Guest guest]

Breathe!!! You are doing a wonderful job with your child. This is a

marathon we're all running, not a sprint. He's labeling - that is a

wonderful thing! It means he recognizes things he sees and is

attaching the appropriate word to the item. Yea for you both!

I once had another mom tell me that seeing progress in our kids is

sometimes like watching grass grow. You watch and watch, and it

doesn't appear to be changing. Then one day, you look outside and

notice Wow! that grass has really grown! It needs to be mowed!

Ditto our kids - Wow! he's labeling! He couldn't do that x months

ago!

From your post it appears that you caught his delays early, and

acted upon them. The only thing I can think of that you haven't

already would possibly be Dr. Amy Yasko's protocol. I believe there

is a group dedicated to her work and parents involved in it.

I do believe it involves detailed genetic testing that attempts to

define underlying causes. We haven't gone that route. We just got

back from Austin, TX for an initial visit to Dr. Jepson's Thoughtful

House.

Hang in there. You are not alone.

Stephanee

> >

> > Hi, all. I have so enjoyed learning and suffering and

celebrating

> > with all of you, even though I am usually just a lurker. My own

ds

> > is still fighting his apraxia/low tone. He was off the chart

with

> > aluminum, antimony, and lead--but that's getting better. We are

> > GF/CF almost two years now. He'll be 3 in March. We have done

two

> > years of cranio-sacral, chelated for a year, done B-12

injections a

> > year, changed cooking pots, clothing, bedding, air filtering,

clay

> > baths, chiropractic, massive fish oil/B vitamin etc.

supplements,

> and

> > still he's only labeling. His SLP says he'll really talk at some

> > point, and he doesn't need augmentative communication, but I am

> > getting desperate. He's done 20 hyperbaric dives in a hard

chamber

> > at 1.5 ATA with 100% oxygen (in process for 40 by month's end)

and

> > he's not improved at all. His DAN said he'd be a great candidate

> for

> > improvement given his profile (as did the SLP and O/T). And

> > nothing. I feel we are doomed. I am so upset at this point--

> > insurance won't pay for the hyperbarics (or anything else) and I

am

> > broke and my kid still can't talk. He's in another city where

the

> > hyperbaric doc is and staying with my folks, so I can't even see

> him

> > but on weekends (I have to stay here and work 2 jobs just to

keep

> the

> > bills somewhat paid.) Any suggestions for something to help this

> > kid? Any ideas? Just a shoulder to cry on? Thank you all for

> > everything you do and share on the board. You are like second

> family.

> >

>

>

>

>

>

>

>

>

[Guest guest]

Wow! You and your son have been through A LOT! You sound like a

very dedicated, supportive mom whom your son is very lucky to have.

I want to tell you that at 3 years, actually even during my son's

whole third year, he was communicating mostly by signing. The words

he did have were difficult to understand and there were MANY, I

repeat MANY! melt downs over not being able to get what he wanted

because his language was severally limited. We only added PRO EFA

and even that I had to do at small increments due to horrible

behavior swings. I removed some foods like chocolate that seemed to

also affect behavior but did no elimination " diet " . I didn't even

know about DAN! then and things like chelating sounded way to scary

without professional help. What we did do was therapy until I

thought it would come out the top of his and my head. At one point I

was really scared that he would resent me some day because I did

therapy at home instead of just being his mom. And who knows maybe

some day he will but I'm still glad I did it.

Now Nick is 6 yrs old, soon to be 7 at the end of April. He did not

qualify for public school therapy this year because they told me his

speech was AGE APPROPRIATE. Is it? Well, communication wise he's

not where I want him to be, but by their standards he is age

appropriate in speech. And truly if back then anyone had told me

that when he was 6 years old that someone would tell me his speech

was age appropriate I would have cried with joy. On the physical

front he's also just recently competed in his first gymnastics

competition. He came home with several blue ribbons for his age

group! This despite a low tone diagnosis when he was 2 years old.

I think I know where you are because I remember feeling that my son

would NEVER speak, that we would have to buy him a communicator. In

fact two SLPs told us we would have to. I know that some children

don't do what my son did. I know children that are Nick's age that

are not speaking. The thing is, it can happen. It happened for my

son. But most of all I know in my heart of hearts that even if he

didn't gain any more language then he had when he was 3, he still

would be OKAY. I would love him and he would be wonderful and he

would be successful in life despite his language impairment.

Be good to yourself. Take a break even. Just know in your heart of

hearts that no matter what he really will be wonderful. Remember

apraxia is only a diagnosis, it is not who he is.

All the very best,

McCann

>

> Hi, all. I have so enjoyed learning and suffering and celebrating

> with all of you, even though I am usually just a lurker. My own ds

> is still fighting his apraxia/low tone. He was off the chart with

> aluminum, antimony, and lead--but that's getting better. We are

> GF/CF almost two years now. He'll be 3 in March. We have done two

> years of cranio-sacral, chelated for a year, done B-12 injections a

> year, changed cooking pots, clothing, bedding, air filtering, clay

> baths, chiropractic, massive fish oil/B vitamin etc. supplements,

and

> still he's only labeling. His SLP says he'll really talk at some

> point, and he doesn't need augmentative communication, but I am

> getting desperate. He's done 20 hyperbaric dives in a hard chamber

> at 1.5 ATA with 100% oxygen (in process for 40 by month's end) and

> he's not improved at all. His DAN said he'd be a great candidate

for

> improvement given his profile (as did the SLP and O/T). And

> nothing. I feel we are doomed. I am so upset at this point--

> insurance won't pay for the hyperbarics (or anything else) and I am

> broke and my kid still can't talk. He's in another city where the

> hyperbaric doc is and staying with my folks, so I can't even see

him

> but on weekends (I have to stay here and work 2 jobs just to keep

the

> bills somewhat paid.) Any suggestions for something to help this

> kid? Any ideas? Just a shoulder to cry on? Thank you all for

> everything you do and share on the board. You are like second

family.

>

[Guest guest]

The apraxiabiomed group, while not dedicated to her work, was started

by a woman who knows it well and may be able to help. Labeling is the

precursor to the rest. Hang tough and know it will pay off.

> > >

> > > Hi, all. I have so enjoyed learning and suffering and

> celebrating

> > > with all of you, even though I am usually just a lurker. My own

> ds

> > > is still fighting his apraxia/low tone. He was off the chart

> with

> > > aluminum, antimony, and lead--but that's getting better. We are

> > > GF/CF almost two years now. He'll be 3 in March. We have done

> two

> > > years of cranio-sacral, chelated for a year, done B-12

> injections a

> > > year, changed cooking pots, clothing, bedding, air filtering,

> clay

> > > baths, chiropractic, massive fish oil/B vitamin etc.

> supplements,

> > and

> > > still he's only labeling. His SLP says he'll really talk at

some

> > > point, and he doesn't need augmentative communication, but I am

> > > getting desperate. He's done 20 hyperbaric dives in a hard

> chamber

> > > at 1.5 ATA with 100% oxygen (in process for 40 by month's end)

> and

> > > he's not improved at all. His DAN said he'd be a great

candidate

> > for

> > > improvement given his profile (as did the SLP and O/T). And

> > > nothing. I feel we are doomed. I am so upset at this point--

> > > insurance won't pay for the hyperbarics (or anything else) and

I

> am

> > > broke and my kid still can't talk. He's in another city where

> the

> > > hyperbaric doc is and staying with my folks, so I can't even

see

> > him

> > > but on weekends (I have to stay here and work 2 jobs just to

> keep

> > the

> > > bills somewhat paid.) Any suggestions for something to help

this

> > > kid? Any ideas? Just a shoulder to cry on? Thank you all for

> > > everything you do and share on the board. You are like second

> > family.

> > >

> >

> >

> >

> >

> >

> >

> >

> >