True Recovery

[Guest guest]

In response to the following post, I too saw the video that was put out by

Autism Research Institute. In my opinion almost all of these kids were not

truly recovered. Although one or two were doing quite well, most were still

greatly afflicted. In comparison, Dr. Goldberg's patients are on a different

level and able to do things more typical in nature if they get the educational

component and/or the ABA needed in conjunction with the medical treatment.

My child is recovered. I determine recovery as being indistinguishable from his

peers. Mine is a little nerdy and a little Bill Gatesish, but no one who ever

guess he was once severely afflicted with Autism. He is now seventeen. If

someone would have told me when he was four and in the third percentile for

speech that some day he be interesting to talk to, knows more about the world

than anyone I know and be able to make me laugh uncontrollably, I wouldn't have

believed them. My son is also a good person with good values. He helps others

and has the empathy the doctor's said would never be possible for someone with

Autism. When he was first diagnosed, I was just hoping for an independent life

not in a group home or institution. But he is in all AP classes with no

assistance, drives his friends to school, and gets almost all " A's. " Our

biggest decision is now where he will go away to college. He will have a normal

life thanks to Dr. G's treatment and the ABA we did over the years. Now if I

can only do some of that ABA on Dr. G so we don't have to wait so long in his

office for our appointments.

If you wave a magic wand and make these kids bodies healthy, you still have to

catch them up on all the academic, social and life skills they missed along the

way. I too ache for parents whose children are not recovered like mine. There

are some parents who work tirelessly, do the medical and behavioral

interventions and their children's immune systems are too compromised to have

complete recovery.

But the kids I hurt the most for are the ones whose parents haven't given them a

shot by trying the medical or the ones who are afraid of the ABA because it

might hurt their children's self esteem. And don't even get me started on the

parents who do get the ABA, but the ABA providers are trying to make a fast buck

and are not doing it correctly.

It saddens me that some kids they are just too old when they start the medical

and recovery is extremely difficult (but possible). Even if their children get

better physically, the inappropriate behaviors are ingrained. For years these

kids have done these behaviors as a way to survive this hell. And the older the

child is after they start medically, the more they need to learn in language,

social skills and appropriate behavior.

There are parents out there who would do anything to avoid a meltdown. I used

to be one, it was much easier in the short term to give the kid what they

wanted, but was not what was best for the child. These parents do not treat

their children like " normal " kids and subconsciously do anything to appease

their kid to make sure there are no outbursts. Our kids can be very

well-behaved if we give in to them and don't demand that they join up with the

rest of the world.

My child was well-behaved before I began ABA. He only became a terror after we

started ABA and demanded things of him. They hold on tight to their obsessive

behaviors and children who were never violent before often become so for a short

period of time to try to remain Autistic. I didn't even realize how many things

I did to avoid upsetting him. Most of the time it was bargaining. If you do

this, then this will happen. But you can't bargain with terrorists and that is

what our children become if we let them. I used to let him sit behind me in the

car because it made him happy and I thought I was being a good mom. But you

have to shake up their world and not tolerate the obsessive behaviors. The real

world is not the same all the time. My kid would only eat lunch between 12 and

1 so if we missed this time period, he would not eat until dinner. I usually

would turn back the clock so he wouldn't know what time it really was. Looking

back this wasn't the worst thing I did because you can't teach them everything

at once. You need to concentrate on one behavior at a time until it is mastered

and then move on to the next.

Over the years I have talked to thousands of parents who are well meaning in

nature and would do anything to help their kids. Unfortunately those of us who

have lived this know just how draining these kids are and how stubborn the

parent needs to be to make the child do the right thing. It takes an

unbelievably strong parent to keep going when you get no feedback from your

child that they are progressing. Recovery is a long process and the hardest

thing I ever had to do was to keep talking and working with a child who did not

respond. It was not until later that I realized he was learning even though he

gave me no feedback. Hang in there and don't give up on your child, no matter

how hard they try to make you.

And if you haven't already done so, get your child to Dr. Goldberg in Tarzana,

CA or Dr. Bruce in Chorpus Christi, Texas.

Marcia

Hi,

My name is Charmian and I am new to the group. My son is 6 and mildly to

moderately affected by ASD. I too, am skeptical about " recovery " . I watched a

tape on the web of a group of recovered children and saw a group of children

very similar to my son. If he were interviewed by an adult in front of a

microphone and asked questions about his preferences, he'd perform beautifully.

But put him in a backyard with a couple typical kids and leave him to his own

devices and his challenges would soon be apparent. And that's when he

doesn't have strep...which is a different story entirely.

I ache for every Mother who's children have not made the progress mine has

made, and every Mother who's children have gone farther gives me hope. But

recovery, I just don't know.

I hope to learn more from this group. I'm particularly interested in PANDAS

and fever stories.

Thank You

[Guest guest]

Thank You Warren, Lea, and Marcia. As a Mother of a 6 year old in

Kindergarten I need to see the future as something other than bleak. I'm hoping

with my son's mind, maybe he can work here at IBM and support us. We've

certainly blown our retirement savings. Fortunately, I have no other kids to

resent me for my obsessive attention to my son. My Cats, however, have never

been

the same since he was born.

It sounds as if you continued with the ABA well into elementary school. Did

the school pay for it for such high functioning kids? Just wondering.

A woman who wrote a book on her recovered son goes to my developmental ped.

We have an appointment next month. I have so many questions to ask.

Thank You for sharing your stories. I especially take hope in the fact that

several of the children were not the " diagnosed at 18 months, did 2 years 50

hours ABA and now at 5 he's in Kindergarten without an aide " type stories that

make the rest of us feel so much like we did too little, too late.

Sincerely,

Charmian

[Guest guest]

it's also hard finding a good ABA provider (at least in my experience). ABA

is all the rage now a days. when my son was diag almost 7 yrs ago, i didnt

hear much about it (maybe it was just me). anyway, bio med treatments and a

GOOD ABA program in a newly diag child can make a huge difference. a little

too late for my kiddo, but, im still very hopeful...

vicki

[Guest guest]

We are the friends to whom refers, and she summarizes our situation quite

nicely. Our son still does take some meds, but we use the word " recover "

unashamedly, for the same reason that several others on this list do: our son is

indistinguishable from his peers. Those of us who know his history, of course,

might attribute the occasional bit of rare behavior to his diagnosis (our son

tends to act a bit impulsively when he's sick, for example), but the rest of the

world would simply chalk it up to a bad day, something my neurotypical daughter

has perhaps more often than my son. :-) I would love for him to be able to get

off the meds completely, and I pray that that day will come sometime soon. (Dr.

Goldberg seems as enthused as he's ever been these days about those dang immune

modulators that all of us have been waiting for forever.) But if the price for

the incredible recovery that my son has experienced--5 A's and a B on the most

recent report card; good social skills; I used to pray that he'd talk someday,

and now I can't shut him up--is a regular regimen of maintenance meds, we're

willing to pay that. My mom's been on thyroid meds for 40 years, and she's

doing OK.

Getting to this point has been the hardest thing we've ever done. About half of

the past 8 years that we've been with Goldberg are just a blur--that's time that

we'll never recover. We pray that our daughter won't end up on a shrink's couch

in 20 years, bemoaning the fact that her parents had to spend every waking

moment for about 6 years focusing on her brother. And we're in debt up to our

eyeballs. We'll be living paycheck to paycheck for the rest of our lives, I

imagine. But our son now has as much chance as any other kid to go to college,

marry, get a job, and raise a family of his own sometime, Lord willing, and we

wouldn't have been there without Goldberg and the protocol and intense ABA

overseen by the fabulous folks at CARD.

Warren & Lea

True Recovery

I have not been active on the list for many years since our

son's recovery, but I did read the list today and noticed the thread

on true recovery. I just wanted to share our story to give hope to

others that true, complete recovery is possible.

Our son was diagnosed with " autism " () at 2 years of age and we

began medical treatment with Dr. Goldberg and ABA therapy through

CARD when he was 2.75 years old. Our son was

definitely " autistic " . He was nonverbal, had stim behaviors and

lacked significant social skills. After 3 ½ years of intensive ABA

therapy and medical treatment by Dr. Goldberg, he was recovered and

entered Kindergarten without any difficulty.

Now our son is 11 years old and in the 5th grade. He is truly

indistinguishable from his peers in every way. His teachers have

been unaware of his past history and always comment about what a joy

he is to have in class. He is a straight A student, competes on the

school spell bowl team, is a starter for the travel soccer team he

plays on, frequently receives awards in class (including for good

behavior) and most importantly, has normal friendships. In fact,

this year he has started getting phone calls and gifts from girls at

school. I'm not sure I'm ready for these upcoming teenage years but

he certainly is!

Our son has not taken any medications for for over 4 years

now. We do continue to watch his diet; he avoids dairy and whole

grains in order to keep from overly stressing his immune system. We

also continue to monitor his immune system through yearly blood

panels with Dr. Goldberg. Our son is unaware of his previous

diagnosis and only remembers that he had trouble talking when he was

young due to an immune system problem and that he needed speech

therapy.

I do not believe our son would be recovered today without both the

medical treatment by Dr. Goldberg and the intensive therapy. It was

a very long and difficult road to travel with major sacrifices to

make it happen. But it did happen for our son, and he is not the

only one. We have dear friends whose son was also diagnosed

with " autism " at the same age and time of our son. They also sought

treatment using Dr. Goldberg and the protocol and intensive ABA

therapy. Their son is also recovered.

I do not mean to imply that this approach is for everyone or that

full recovery is always possible. I just wanted to encourage those

parents who needed it. I know what a long difficult road it can be;

and I dare not think what might have happened if we hadn't pursued

and persevered with our son's treatment.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute and/or the Parent Coalition.

[Guest guest]

Thanks to you and for your emails, I really need to keep my eye on

the prize. My daughter has always been high functioning but it's her

social skills that really set her apart from her peers. And eventually it

will be her reading comprehension since she's so concrete and has a hard

time making inferences. I keep hearing about ABA but I've never thought of

it for her. Is ABA for all kids, or is there a certain type of child it is

better suited for?

Thanks in advance,

[Guest guest]

Hi Vicki,

It's never too late! Have you heard of AST (Autism Spectrum Therapies)?

(310) 641-1100. They're just one of many good agencies.

May God bless your family.

Argie

Re: True Recovery

it's also hard finding a good ABA provider (at least in my experience).

ABA

is all the rage now a days. when my son was diag almost 7 yrs ago, i

didnt

hear much about it (maybe it was just me). anyway, bio med treatments

and a

GOOD ABA program in a newly diag child can make a huge difference. a

little

too late for my kiddo, but, im still very hopeful...

vicki