What recovered from autism really means?

[Guest guest]

Hi all,

People everywhere talk about how different treatments can help children recover

from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

For me the meaning of recovered is being able to be independent in life,

happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

In your opinion, what recovered means to you?

JR

[Guest guest]

I just posted a very similar question about a week ago It's like the better

your kid gets, the more you want. While other behaviors disappear, other little

things begin to emerge...sometimes it's only things that YOU see while your kid

looks pretty normal to other people. I know what you mean about the recovery

thing. " Recovery " scares me sometimes because I don't want to fail. It's easier

for me to say " recovering. " I don't know that we will ever have an actual tool

to consider a child recovered other than taking the child to a completely

unbiased dr for a thorough exam to make sure the child no longer meets the

requirements. What I have come to learn is that there are so many opinions when

it comes to autism and recovery..what it takes to get there and when a child

should be considered to be recovered. Just as there are many different ways to

recover our kids, there are many different doctors with differing opinions. I am

no expert, but for me, I am aiming for my child to lose all inappropriate

stimming behaviors and for him to be able to completely function in a classroom

with no heavy assistance. HTH Amy

>

> Hi all,

> People everywhere talk about how different treatments can help children

recover from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

>

> For me the meaning of recovered is being able to be independent in life,

> happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

>

> In your opinion, what recovered means to you?

>

> JR

>

[Guest guest]

To me recovery = cured. No more autism, no more symptoms. No more subtleties. It

means gone. To me that's what it means.

Failed recovery hurts. When Allie went gfcf at 2 1/2 yrs old & began talking, I

just knew she would be recovered by kindergarten. That came & went, then I told

myself by 2-3 grade. As that approached I said by puberty. Now puberty is

starting & I'm slowly starting to accept she likely will always have autism. I'm

moving more away from cured and more into improvements. That's why I think the

autism community should not focus on recovery as much as improvement. To me

recovery means cure, I'm sure to each person it means something different.

When I began to miss those milestones I had made in my mind for my daughter, it

was like getting stabbed in the guts over & over. Some kids are cured,

recovered, what ever you want to call it. I believe that. But to date they are a

minority. But, the majority of kids with autism make varying degrees of

improvement. If a parent expects improvements then parent gets expectations met.

If child recovers, it's even more than expectations. If child doesn't recover,

expectations still met through improvement. Therefore I wish we would focus on

improving health to give child best outcomes and to prevent this parent funk

that hits many of us when it doesn't happen.

Debi

--- In mb12 valtrex , " "

>

> In your opinion, what recovered means to you?

>

> JR

>

[Guest guest]

>

Great Question!

I have read so many stories about children who have been recovered but I have

never personally met a child who has recovered. While I am extremely happy for

these parents and children, I do get discouraged that I can't seem to 'recover'

my son.

While I would not consider my son recovered, I feel he is steadily improving. I

continue to do everything I can to address any health concerns (inflammation,

yeast, immune system) as well as provide him appropriate therapies such as OT

and Speech.

I get discouraged; however, my son brings me so much happiness, I am thankful

for how far he has come and how much love he brings this family.

He is a 6 year old boy who doesn't have a mean bone in his body. He is a loving

individual who melts everyone he meets. For someone who lacks social skills, he

sure seems to attract a lot of people.

I don't care so much that Stratton loses all of his autistic traits, I just want

him to be independent one day, happy and find love and friendship. I want him

to be healthy and have a good self esteem. If he reaches these milestones, in

mind, that is more than enough.

I am glad you raised this question and for the responses of other parents.

> Hi all,

> People everywhere talk about how different treatments can help children

recover from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

>

> For me the meaning of recovered is being able to be independent in life,

> happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

>

> In your opinion, what recovered means to you?

>

> JR

>

[Guest guest]

Have you seen the video on recovery from Generation Rescue or TACA (someone help

me out here)?

There is one part, it's really cute, a little blond girl says, " I used to have

autism, but now I take pills and I don't have autism any more. "

CGF

>

> --- In mb12 valtrex , " "

> >

> > In your opinion, what recovered means to you?

> >

> > JR

> >

>

[Guest guest]

Hi -

You describe my son – he too, does not have a mean bone either and attracts attention even though he is non-verbal.

For me, it’s not recovery, it’s more about quality of life and that’s what I focus on – to make sure he is as independent as he can be to live a quality life – that would make me very happy. He always is happy and I hope that does not change as he ages (he’s 6 too). He is the hardest working 6 year old that I know and if my NT 4 year old had to do 1/2 of what he does every day – she would not be as happy as he is. I am hoping we can give him more ways to communicate if he stays non-verbal so that he can at least interact with others as well. My biggest fear is isolation because he cannot talk – so, we’ve worked on that since he was 18 months old and will continue that throughout his life to help him in that way should he never gain words.

Laureen

>

Great Question!

I have read so many stories about children who have been recovered but I have never personally met a child who has recovered. While I am extremely happy for these parents and children, I do get discouraged that I can't seem to 'recover' my son.

While I would not consider my son recovered, I feel he is steadily improving. I continue to do everything I can to address any health concerns (inflammation, yeast, immune system) as well as provide him appropriate therapies such as OT and Speech.

I get discouraged; however, my son brings me so much happiness, I am thankful for how far he has come and how much love he brings this family.

He is a 6 year old boy who doesn't have a mean bone in his body. He is a loving individual who melts everyone he meets. For someone who lacks social skills, he sure seems to attract a lot of people.

I don't care so much that Stratton loses all of his autistic traits, I just want him to be independent one day, happy and find love and friendship. I want him to be healthy and have a good self esteem. If he reaches these milestones, in mind, that is more than enough.

I am glad you raised this question and for the responses of other parents.

> Hi all,

> People everywhere talk about how different treatments can help children recover from autism. I have even seen many people say that their children are recovered. When I see their children and compared them to my son, my son is doing much better and I don't consider my son recovered yet. So I'm confused... I really want to know what " recovered " really means. I would really like people to be able to measure improvements by using the same metrics " measuring stick " .

>

> For me the meaning of recovered is being able to be independent in life,

> happy, have friends, be successful in school, be able to find a job and keep it(not be an expense to this country), be a confident person and most important be 100% healthy.

>

> In your opinion, what recovered means to you?

>

> JR

>

[Guest guest]

That's an excellent point Debi. Complete full recovery sometimes seems so

unattainable, that we set ourselves up to feel like failures. " since he is doing

this now, he must be doing this by next year.... " Doesn't always work out that

way. I remember my son didn't understand Christmas at all. I was always thinking

" next year he will be excited about Santa... " This happened for like 2-3 yrs and

he finally understood it..but it wasn't on my timeline. It was when HE wanted to

do it Looking for steady gains, great health and doing the best we can sounds

like a better plan. Autism is an auto-immune disease..sometimes it's easier to

think about maintaining this disease. Some can't cure asthma or allergies, but

they can avoid certain triggers and keep it under control. It's not always as

simple as ridding yeast or ridding metals. New stuff pops up when we least

expect it. So, I would strive for your child to be healthy, do periodic testing

to make sure you are going in the right direction and place your child in the

least restrictive school environment, making sure he/she is both assisted and

challenged at the same time.

>

> To me recovery = cured. No more autism, no more symptoms. No more subtleties.

It means gone. To me that's what it means.

>

> Failed recovery hurts. When Allie went gfcf at 2 1/2 yrs old & began talking,

I just knew she would be recovered by kindergarten. That came & went, then I

told myself by 2-3 grade. As that approached I said by puberty. Now puberty is

starting & I'm slowly starting to accept she likely will always have autism. I'm

moving more away from cured and more into improvements. That's why I think the

autism community should not focus on recovery as much as improvement. To me

recovery means cure, I'm sure to each person it means something different.

>

> When I began to miss those milestones I had made in my mind for my daughter,

it was like getting stabbed in the guts over & over. Some kids are cured,

recovered, what ever you want to call it. I believe that. But to date they are a

minority. But, the majority of kids with autism make varying degrees of

improvement. If a parent expects improvements then parent gets expectations met.

If child recovers, it's even more than expectations. If child doesn't recover,

expectations still met through improvement. Therefore I wish we would focus on

improving health to give child best outcomes and to prevent this parent funk

that hits many of us when it doesn't happen.

>

> Debi

>

> --- In mb12 valtrex , " "

> >

> > In your opinion, what recovered means to you?

> >

> > JR

> >

>

[Guest guest]

What a great topic!

To me, recovered means that we can be free of my son's rages and mood swings and

OCD and the whole family being disrupted by them.

When we can have (relative) peace in our home or can go someplace without worry

about tantrums and meltdowns.

Nanci

>

> Hi all,

> People everywhere talk about how different treatments can help children

recover from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

>

> For me the meaning of recovered is being able to be independent in life,

> happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

>

> In your opinion, what recovered means to you?

>

> JR

>

[Guest guest]

In Freud's words, to be able to love and work. When my girl is able to enjoy others and be creative and productive, I'll be done!LuzWhat a great topic!To me, recovered means that we can be free of my son's rages and mood swings and OCD and the whole family being disrupted by them.When we can have (relative) peace in our home or can go someplace without worry about tantrums and meltdowns. Nanci>> Hi all,> People everywhere talk about how different treatments can help children recover from autism. I have even seen many people say that their children are recovered. When I see their children and compared them to my son, my son is doing much better and I don't consider my son recovered yet. So I'm confused... I really want to know what "recovered" really means. I would really like people to be able to measure improvements by using the same metrics "measuring stick".> > For me the meaning of recovered is being able to be independent in life,> happy, have friends, be successful in school, be able to find a job and keep it(not be an expense to this country), be a confident person and most important be 100% healthy.> > In your opinion, what recovered means to you?> > JR>

[Guest guest]

I thought I'd use this as a chance to jump in and introduce myself.Some of you may recognize me from my Age of Autism post.As you may know,I don't just have autism,but a whole host of serious medical problems,that began between infancy,and age fifteen.My autism is/has always been like autistic disorder/LFA,but without intellectual disability.I have everything else,and I do mean everything,including eloping and headbanging.Some may call this atypical autism,and some high functioning autism.Medical problems,and regression triggered by illness,have always been a central part of my autism,which is why I cannot really relate to the majority of adult autistics.When was the last time you read an adult autistic like Baggs blogging about bowel disease,chronic fever,heart problems,or how a bout of one of these can lead to several days of

worsened autism symptoms,left alone an,acute infection that can lead to a major prolonged regression,such as I have had several times,most recently in April of 2007.This gets us to recovery.For all of the hype you see about this regimen or that regimen, and how it has "cured" someone of autism,recocovery is often a temporary thing.It can often take a minimum of ten to fifteen years to truly "recover","lose your diagnosis".or "move up spectrum" to a less severe ASD.One major infection can push you back decades,and cause serious regression.Amy,has your son actually been diagnosed with autoimmune disease?This means something very specific.As someone who has had just about every possible test for autoimmune disease.and had them come out more or less normal,I would be kind of surprised.Like wholly genetic causes,a truly autoimmune cause for autism hasn't been found.Allergies are a comorbidity,just like seizures,but they can make

autism worse.

I really hasn'tI do hope you saw Tim Buie,and Martha Herbert's presentation at this year's Maine CDC autism conference.They believe that not all complex medical syndromes in autism are fully mitochondrial.Some are part mito part something else,and some are yet another unidentified class of disease,possibly autoinflammatory,and involving the innate immune system. -- In mb12 valtrex , "amysmith_lasvegas" wrote:>> That's an excellent point Debi. Complete full recovery sometimes seems so unattainable, that we set ourselves up to feel like failures. "since he is doing this now, he must be doing this by next

year...." Doesn't always work out that way. I remember my son didn't understand Christmas at all. I was always thinking "next year he will be excited about Santa..." This happened for like 2-3 yrs and he finally understood it..but it wasn't on my timeline. It was when HE wanted to do it Looking for steady gains, great health and doing the best we can sounds like a better plan. Autism is an auto-immune disease..sometimes it's easier to think about maintaining this disease. Some can't cure asthma or allergies, but they can avoid certain triggers and keep it under control. It's not always as simple as ridding yeast or ridding metals. New stuff pops up when we least expect it. So, I would strive for your child to be healthy, do periodic testing to make sure you are going in the right direction and place your child in the least restrictive school environment, making sure he/she is both assisted and challenged at the same time.> > >

> > >> > To me recovery = cured. No more autism, no more symptoms. No more subtleties. It means gone. To me that's what it means. > > > > Failed recovery hurts. When Allie went gfcf at 2 1/2 yrs old & began talking, I just knew she would be recovered by kindergarten. That came & went, then I told myself by 2-3 grade. As that approached I said by puberty. Now puberty is starting & I'm slowly starting to accept she likely will always have autism. I'm moving more away from cured and more into improvements. That's why I think the autism community should not focus on recovery as much as improvement. To me recovery means cure, I'm sure to each person it means something different.> > > > When I began to miss those milestones I had made in my mind for my daughter, it was like getting stabbed in the guts over

& over. Some kids are cured, recovered, what ever you want to call it. I believe that. But to date they are a minority. But, the majority of kids with autism make varying degrees of improvement. If a parent expects improvements then parent gets expectations met. If child recovers, it's even more than expectations. If child doesn't recover, expectations still met through improvement. Therefore I wish we would focus on improving health to give child best outcomes and to prevent this parent funk that hits many of us when it doesn't happen.> > > > Debi> > > > --- In mb12 valtrex , " " > > > > > > In your opinion, what recovered means to you?> > > > > > JR> > >> >>

[Guest guest]

I was at the USAAA conference this weekend. Dr Goldberg brought in 3 young

adults that have recovered and a family. He stopped his talk so the children and

their parents could speak. I almost fell off my chair to hear they really didn't

remember having autism. One was in college, one high school and another going

off to college. They took questions from the audience and answered them! This

completely changed my view of the extent recovery is possible.

They have normal lives now and so do the parents. I just have to say I was

completly blown away and from the applause I would say so was the audience. I

had only seen recovery videos before that seemed a litte recovered but this has

COMPLETELY changed my goal of what is really posible. It was really nice to see

some happy outcomes for a change. Boy would I love my kid to drive me around

someday

Sally

>

> Hi all,

> People everywhere talk about how different treatments can help children

recover from autism. I have even seen many people say that their children are

recovered. When I see their children and compared them to my son, my son is

doing much better and I don't consider my son recovered yet. So I'm confused...

I really want to know what " recovered " really means. I would really like people

to be able to measure improvements by using the same metrics " measuring stick " .

>

> For me the meaning of recovered is being able to be independent in life,

> happy, have friends, be successful in school, be able to find a job and keep

it(not be an expense to this country), be a confident person and most important

be 100% healthy.

>

> In your opinion, what recovered means to you?

>

> JR

>

[Guest guest]

Thank you for the post, Sally. It brings a tear of hope to my eye.

--penumbra

>>> They have normal lives now and so do the parents. I just have to say I was

completly blown away and from the applause I would say so was the audience.

<snip>

[Guest guest]

I agree with what you've said, my son is not yet three so not expecting independence yet, but in the future I certianly hope for it. To me recovered is if I just met my son I would never know that he had been autistic. He would go to regular schools and he would test as normal on tests, even if it did take a few years to catch up on stuff. He would talk and play with the other kids that he is currently facsinated with but runs away from when they approach.

That said, if he could just start talking I think it would make a world of difference in his life and I would be overjoyed with that result alone.

To: mb12 valtrex Sent: Saturday, July 11, 2009 10:04:58 PMSubject: What "recovered" from autism really means?

Hi all,People everywhere talk about how different treatments can help children recover from autism. I have even seen many people say that their children are recovered. When I see their children and compared them to my son, my son is doing much better and I don't consider my son recovered yet. So I'm confused... I really want to know what "recovered" really means. I would really like people to be able to measure improvements by using the same metrics "measuring stick".For me the meaning of recovered is being able to be independent in life,happy, have friends, be successful in school, be able to find a job and keep it(not be an expense to this country), be a confident person and most important be 100% healthy.In your opinion, what recovered means to you?JR

[Guest guest]

Hi Many of us here feel that our children have auto-immune diseases

because of what is going on in their bodies. In my particular child's case, he

has been diagnosed with mitochondrial dysfunction..testing showed an antibody

against the inner part of the mitochondria indicating " auto-immune " issues. My

husband has diabetes, his only sister had diabetes, his father has diabetes and

his mother has multiple sclerosis. I do feel that there is something genetic

that put him at risk for all of this. He used to have a severe vomitting problem

as well and hyper immunity (never got sick). In saying all of this, now he is 5

and appears to be somewhere between PDD and ADD. He is doing very well, but I

still have to juggle everything..all of his supplements, his special diet (he is

very sensitive to gluten and food dye), watching his yeast levels, doing

testing, he has an IEP, etc. Sometimes I think he is in a managed recovery and

other days I think " what in the world am I thinking!! "

I am fascinated by your story. There are some kids who don't seem to respond to

medical treatment, but for most of us, it seems to be our life line. I will have

to check your post on AofA. Your story sounds so interesting.

> > >

> > > To me recovery = cured. No more autism, no more symptoms. No more

subtleties. It means gone. To me that's what it means.

> > >

> > > Failed recovery hurts. When Allie went gfcf at 2 1/2 yrs old & began

talking, I just knew she would be recovered by kindergarten. That came & went,

then I told myself by 2-3 grade. As that approached I said by puberty. Now

puberty is starting & I'm slowly starting to accept she likely will always have

autism. I'm moving more away from cured and more into improvements. That's why I

think the autism community should not focus on recovery as much as improvement.

To me recovery means cure, I'm sure to each person it means something different.

> > >

> > > When I began to miss those milestones I had made in my mind for my

daughter, it was like getting stabbed in the guts over & over. Some kids are

cured, recovered, what ever you want to call it. I believe that. But to date

they are a minority. But, the majority of kids with autism make varying degrees

of improvement. If a parent expects improvements then parent gets expectations

met. If child recovers, it's even more than expectations. If child doesn't

recover, expectations still met through improvement. Therefore I wish we would

focus on improving health to give child best outcomes and to prevent this parent

funk that hits many of us when it doesn't happen.

> > >

> > > Debi

> > >

> > > --- In mb12 valtrex , " "

> > > >

> > > > In your opinion, what recovered means to you?

> > > >

> > > > JR

> > > >

> > >

> >

>

[Guest guest]

Mr , I absolutely agree with you. That would be the meaning of "recovered'. To be able to live independent productive and happy life and make friends. that last part would be the recovery- the removal of the basic factor of autism- the avto- Greek" for by itself". It is possibly though, my son is there- I mean he is 8, doesn't have a job, bu he gets an allowance for chores, does this count? And he is not on any treatment any more or diet. It took 6 years of intensive treatment but we arrived. I hope the same for every child and parent out there!You too! :-)Have a wonderful day!!!Milena Sideris autismalternative.comTo: mb12 valtrex Sent: Saturday, July 11, 2009 8:04:58 PMSubject: What "recovered" from autism really means?

Hi all,

People everywhere talk about how different treatments can help children recover from autism. I have even seen many people say that their children are recovered. When I see their children and compared them to my son, my son is doing much better and I don't consider my son recovered yet. So I'm confused... I really want to know what "recovered" really means. I would really like people to be able to measure improvements by using the same metrics "measuring stick".

For me the meaning of recovered is being able to be independent in life,

happy, have friends, be successful in school, be able to find a job and keep it(not be an expense to this country), be a confident person and most important be 100% healthy.

In your opinion, what recovered means to you?

JR