Re: McCarthy

November 19, 2008

and I think that's an EXCELLENT way to say it!

Asa might always have Dyspraxia, but he *WILL* recover and we *WILL* rid

him of as much of the symptoms and problems as we possibly can

AMEN AMEN AND AAAAAAAAAMEN

bek

In a message dated 11/18/2008 8:26:27 A.M. Eastern Standard Time,

danamichellepope@... writes:

I will quote something McCarthy has said several times " You can get

hit by a bus and will not be cured from the injuries but you can recover. Your

child will not be cured from autism, but he/she may recover

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November 19, 2008

Well, no-- actually we're so FAR from any recovery-- but I just have great

HOPE in God, and I trust that he knows what's best for Asa-- and I have heard

so much from those with the older Dyspraxic kids who've intervened and gotten

them help.

YOU, my sweet friend (whom I keep trying to sit down and actually CALL on

the phone! LOL)

have given me a GREAT sense of hope that one day we'll be recovered.

I'll take all that we can get right now

Our biggest snafu is that Asa has a lot more going on that is Orthopedically

a problem in addition to the dyspraxia so we're working against ourselves

half the time

ahhh such challenges

bek

In a message dated 11/19/2008 2:29:18 P.M. Eastern Standard Time,

jscott@... writes:

think that the closer you get to complete recovery.... the more you believe

in it. I would bet that the majority here who are stating that recovery is

possible.... actually have kids that are close to complete recovery or for whom

the parents have discovered a major 'key' to their healing!

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November 19, 2008

It was not meant to be harsh - I didn't mean for her to LEAVE - I

meant for her to join ADDITIONAL groups and see the proof - Jen -

sorry if you took it that way.

> >

> > Autism is not curable, it just isn't. It is a part of who these

> kids are.

> > Just like you cannot cure obsessive compulsive disorder or

diabetes

> or many

> > other conditions the therapies and bio medical interventions can

> make things a

> > whole lot better. If you believe your child can be cured that is

> great, but

> > autism is a complex neurological condition and it doesn't just go

> away. Many

> > autistic adults have been asked if they would like their autism to

> be gone, they

> > usually answer no. I hope some of my son's autistic tendencies

> get better,

> > every day we see new improvement in one area or another, but there

> really is

> > nothing to cure, he has autism and it is part of his being. The

> symptoms

> > get better usually as they get older and other interventions also

> help. They may

> > even improve so much no one ever knows that they have it. This is

> my belief.

> > If others believe that their children have been cured

> congratulations. Jen

>

November 19, 2008

I like this word " recovery " better Janice and not because I don't believe in

complete recovery, but because it says something about the process---it is often

a long and effort full road as most illnesses are very complex and especially

when it comes to the immune system, the endocrine system, the brain etc, it's

not like you have a wart on your finger and you remove it and it's all gone

without a trace and you can pretend you never had it--of course we now know even

that is a myth as the virus can still be with us.

So recovery is not as loaded and as misleading as the word " cure "

Cure somehow implies that it is gone without a trace and you can forget you ever

had it--I still say this is just not a useful concept given how our bodies,

immune system, neurological system all work. Yes we can recover and achieve

normal functioning levels --but I think for some vulnerabilities will always be

there and the delicate balance can be upset if we try to pretend we're " cured "

--I like recovered, with the caution that to remain recovered and healthy, we

all, even those without any obvious illnesses have to continue to be vigilant

and listen to what our bodies tell us, and try to stay balanced. That's why I

don't like " cure " because somehow implies it is an external miracle or something

that happens, but it isn't. the power to recover is within us and we have to

work with it to heal and achieve that balance.

As always thank you for your insightful and informative posts.

Elena

From: Janice <jscott@...>

Subject: Re:

[ ] Re: McCarthy

Date: Wednesday, November 19, 2008, 11:20 AM

I think that the closer you get to complete recovery.... the more you believe in

it. I would bet that the majority here who are stating that recovery is

possible.... actually have kids that are close to complete recovery or for whom

the parents have discovered a major 'key' to their healing!

..... and I would 'guess' that the people who argue against recovery

have not made as many gains and have kids who are 'tougher nuts'.

We all have different perspectives and we are all at different stages in this

and as well..... all of our kids are unique and different. What works to

recover my kid may help other kids but for a different subset of children.... it

may do nothing.

It is important to practice tolerance. I hope to inspire and to encourage

others with my posts

and I so hope that I have not personally alienated a single

mother or dad. This is a tough course that we all follow, full of small leaps

in development which send us to euphoria and then just as full of regressions

which send us down in the dumps. (They still make me depressed, even after all

these years... and I 'know' that regressions are a part of the

process/path to healing).

What we do have, I hope... is the support of each other through all of the good

days, the bad days and the days that you just don't believe that your child

will get better. I fervantly call out to those that feel like this will

" never " end.... Don't give up hope.... Don't give up searching

or researching.... We will all be there for you and will hold your hand through

ALL of the days, both the good and the bad.

Take care everyone,

Janice

Mother of Mark, 13

[Non-text portions of this message have been

removed]

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

November 19, 2008

Actually,

Elena.... I like the idea of a wart.... you pluck it off so that you can't see

it anymore. Yes, the virus is still 'inside' you and it is possible that you

could get another wart or two down the road but for the most part it does not

interfere with your life.... just like anyone elses' life.

I think that this is accomplishable in our case. It may not be in everybody's

case but I think that we can get there. These days, I have a pretty regular kid

who is a 'little' different but not much different from any other kid. Some of

his skill sets are a little weak in the fine motor arena and he's pretty much

that 70 lb weakling ((!) remember the gum wrappers?)but that's pretty much it.

I had a baby sitter come stay with my kids for 5 days while we were in Vegas

this fall. She couldn't tell..... (I actually only told her about Mark's food

allergies.... nothing else).

Now, I can tell, you could tell and I am sure that anyone on this group could

'see' it still because we are the trained eye and of course, we are always

looking for it. For Mark, you can still see it in his eyes... that

hyper-peripheral vision which we are working on right now.

So.... I'm looking to get the rest of that 'wart' off of my boy because he's

pretty sick and tired of dealing with it....

Janice

November 20, 2008

I hear you Janice. We all want complete recovery if at all possible, but will

settle or all the steps in between as they come and work hard for each and every

one, every inch, and milimiter, every dot of improvement....

I just think when you hear regular doctors who do not believe autism can be

" cured' or any other disorders-- genetic or otherwise because there is no " drug "

out there to do it, make their absolute verdict which discourages parents from

even trying to do anything at all, ----that word " cure " is very

inappropriate--misleading because for those expecting a " magic pill " type

cure. No, there isn't any " cure " in that sense and that's how they discourage

parents from even trying to heal their children's disorders.

Down Syndrome for example has no cure, Alzheimer's has no cure, so many chronic

degenerative disorders have no " cure " ---yet the patients can improve so much and

even lead normal lives--each with their own protocol especially addressing their

particular issues and move closer and closer toward a normal life and some may

reach it--particularly the young ones, those who find themselves closer to the

beginning of life while the brain and other organs are still more plastic and

adaptable.

Of course the more severe the damage and the more complex the disorder the more

difficult the recovery, but by all means worth doing and trying. Down syndrome

as a genetic disorder may not have any " cure " per se,--- that extra chromosome

affecting every cell in the body cannot be re-engineered to disappear, but the

disorders associated with it such as autism, apraxia, mental retardation,

Alzheimer's in the end may be addressed and the quality of life for these people

improved by addressing the separate issues--their speech apraxia, their autism,

etc and dealing with what caused each of these just like in anybody else--you

don't have to cure Down Syndrome, you just have to help the brain recover from

the conditions associated with it.

This is why I get so stuck on this " cure " word, because it can be so misleading

and discouraging when you use it as a blanket statement meaning that some

disorder vanishes without a trace as if it never was there to begin with " --this

is what most people understand by cure and for very complex disorders this just

isn't a useful paradigm.

There is only a long and hard road of gradual recovery which varies with each

individual and is by all means worth doing and nobody should be told -- " there is

no cure " for anything just because the " experts " don't know how to do it--- how

to begin the process of recovery.

When the APA says publicly --- " there is no cure for autism " and doctors over and

over tell this to their patients, and so many people, parents believe them, and

call those who try alternative, integrative, biomedical approaches-- " desperate

parents clinging on to unrealistic methods and pointless hope " and even try to

make them look like they are irresponsible for trying to recover their children

from the clutches of this complex metabolic immune system and neurological

disorder--it just pains me to see so many discouraged parents who don't even try

because they are made to believe " there is no cure "

Western medicine sees things too much in black and white and turns the other way

when it comes to anything they do not understand that doesn't quite fit their

guidelines and manuals--like chronic and degenerative disorders which no " drug "

can really address because the causes are multiple and require approaches that

treat the root causes and not just the symptoms.

So I just fear that for those who are lead to believe there is no " cure " and are

discouraged from even trying, there isn't any hope either, and no one should be

without hope.

If all it takes is changing the word from complete and absolute " cure " to

gradual recovery-- which is an arduous lengthy process in most cases, filled

with trial and error and little tweaks here and there as needed---- well, I'm

all for changing the word and the goal to RECOVERY--

All the best,

Elena

From: Janice <jscott@...>

Subject: Re: [ ] Re: McCarthy

Date: Wednesday, November 19, 2008, 10:50 PM

Actually,

Elena.... I like the idea of a wart.... you pluck it off so that you can't

see it anymore. Yes, the virus is still 'inside' you and it is possible

that you could get another wart or two down the road but for the most part it

does not interfere with your life.... just like anyone elses' life.

I think that this is accomplishable in our case. It may not be in

everybody's case but I think that we can get there. These days, I have a

pretty regular kid who is a 'little' different but not much different

from any other kid. Some of his skill sets are a little weak in the fine motor

arena and he's pretty much that 70 lb weakling ((!) remember the gum

wrappers?)but that's pretty much it.

I had a baby sitter come stay with my kids for 5 days while we were in Vegas

this fall. She couldn't tell..... (I actually only told her about

Mark's food allergies.... nothing else).

Now, I can tell, you could tell and I am sure that anyone on this group could

'see' it still because we are the trained eye and of course, we are

always looking for it. For Mark, you can still see it in his eyes... that

hyper-peripheral vision which we are working on right now.

So.... I'm looking to get the rest of that 'wart' off of my boy

because he's pretty sick and tired of dealing with it....

Janice

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

November 20, 2008

The word 'cure' implies some type of magic pill which of course is unrealistic.

What we have done more closely resembles a comprehensive treatment program....

OT, SLP, VT via neurodevelopmental therapy and then a dietary and supplement

protocol which works the immune system and heals the body. But the end

result... what we are looking for is a person who is 'free' of the condition so

that they can live a regular life.... with all of it's usual setbacks and

possibilities.

But at the end of the day.... I still like that word..... cure.... hmmmm.... it

has a yummy taste to it, doesn't it? Of course, we all know that there is no

one pill, no one treatment but a varied and assortment combo of everything that

works in the end. However, I like to think that the really young kids have an

opportunity to 'completely' heal their bodies so that down the road, they won't

even remember having gone through this as part of their life. I think that is

what we need to strive for. The kids today have such a better prognosis then

the kids in Mark's generation and I believe that this will get better and better

with the new babies being born today and tomorrow.

Janice

Re: [ ] Re: McCarthy