Re:What recovered from autism means?

July 12, 2009

,

My child is recovered. was one of the kids at the conference with Dr G.

this weekend. I was so impressed with all the kids he brought and they are

just a few of the many. 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. And his

killer smile and good nature make up for that. He went into engineering at

college and most of the engineering kids we saw on the college tours are

much more quirky than he is. He did not get better all at once. I remember

asking someone the same question you did of me. How long was your son on

the protocol before he was considered " recovered " ? Was he indistinguishable

from his peers? Does he still have to take those " nasty " meds?

It is not like boom they are better. It is such a gradual process. You

asked if my son still takes the meds. My son still takes iron, celexa, and

antifungal and an antiviral. Until the new medications come along we need

these like a diabetic needs insulin. All of us have medical conditions for

which we take stuff. I'm just glad that in the 15 years my son has been

taking meds in one form or another there has never been a blood test that

showed the meds were doing harm. I worry more about if he will build up a

tolerance to a medication and they will no longer work. But fortunately for

us when the antiviral stopped working, Dr. G found another one to switch to.

The hardest part of raising an child with autism is knowing if it will ever

be okay. Are all these sacrifices our family is making worth it? Are they

actually doing any good? It takes so much time and patience to teach them

all they missed. And it is hard not to let the anger for having to do all

this get in the way. I remember asking myself, " Why do I have to teach my

kid everything other kids just learn? " " Why is everything a struggle? " The

strange part is after going through this, I'm still not exactly sure when he

started learning on his own. It was so gradual that sometimes I didn't even

recognize it was happening. But it did happen and it is a good thing

because I could no longer help him with Math in middle school. Sometimes we

concentrate so much on what they still have left to be taught, we forget to

notice all they have accomplished.

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 even though he is recovered, he like all kids is still evolving. The

social is the last to come. In high school he still had not gone on a date

alone nor had a girlfriend. But in college that all changed.

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 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 like I was for a time are too afraid to

give their kids the medications they need. And don't even get me started on

the parents who are afraid of the ABA because it might hurt their children's

self esteem. Just be careful. There are thousands of ABA providers who

are trying to make a fast buck and are not doing it correctly. And move

away from the strict ABA and teach things more naturally when compliance is

reached. Good teaching is ABA, just not as rigid.

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.

Hope this help,

Marcia

July 12, 2009

Marcia

I saw your son, you are so lucky I have never seen recovery before like the

children Dr. Goldberg showed. It must have been a huge journey and relief at the

same time

Congrats!

-- In , " Marcia Hinds " <hindssite@...> wrote:

>

> ,

>

> My child is recovered. was one of the kids at the conference with Dr G.

> this weekend. I was so impressed with all the kids he brought and they are

> just a few of the many. 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. And his

> killer smile and good nature make up for that. He went into engineering at

> college and most of the engineering kids we saw on the college tours are

> much more quirky than he is. He did not get better all at once. I remember

> asking someone the same question you did of me. How long was your son on

> the protocol before he was considered " recovered " ? Was he indistinguishable

> from his peers? Does he still have to take those " nasty " meds?

>

> It is not like boom they are better. It is such a gradual process. You

> asked if my son still takes the meds. My son still takes iron, celexa, and

> antifungal and an antiviral. Until the new medications come along we need

> these like a diabetic needs insulin. All of us have medical conditions for

> which we take stuff. I'm just glad that in the 15 years my son has been

> taking meds in one form or another there has never been a blood test that

> showed the meds were doing harm. I worry more about if he will build up a

> tolerance to a medication and they will no longer work. But fortunately for

> us when the antiviral stopped working, Dr. G found another one to switch to.

>

> The hardest part of raising an child with autism is knowing if it will ever

> be okay. Are all these sacrifices our family is making worth it? Are they

> actually doing any good? It takes so much time and patience to teach them

> all they missed. And it is hard not to let the anger for having to do all

> this get in the way. I remember asking myself, " Why do I have to teach my

> kid everything other kids just learn? " " Why is everything a struggle? " The

> strange part is after going through this, I'm still not exactly sure when he

> started learning on his own. It was so gradual that sometimes I didn't even

> recognize it was happening. But it did happen and it is a good thing

> because I could no longer help him with Math in middle school. Sometimes we

> concentrate so much on what they still have left to be taught, we forget to

> notice all they have accomplished.

>

> 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 even though he is recovered, he like all kids is still evolving. The

> social is the last to come. In high school he still had not gone on a date

> alone nor had a girlfriend. But in college that all changed.

>

> 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 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 like I was for a time are too afraid to

> give their kids the medications they need. And don't even get me started on

> the parents who are afraid of the ABA because it might hurt their children's

> self esteem. Just be careful. There are thousands of ABA providers who

> are trying to make a fast buck and are not doing it correctly. And move

> away from the strict ABA and teach things more naturally when compliance is

> reached. Good teaching is ABA, just not as rigid.

>

> 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.

>

> Hope this help,

>

> Marcia

>

July 17, 2009

Marcia-

I can't thank you enough for this post. All of it rings so true as I have a 6

1/2 yo and feel as though we battle everything. It can be hell but I so

appreciate that you continue to post. It gives me hope. My guy is in good

shape for the most part and I know he will recover but tonight couldn't be fast

enough. From the school systems, to the insurance companies, etc....it is so

exhausting. Not to mention how hard this dx is on a marriage. I love my child

so intently but sometimes don't feel as though we are afforded the life that

others with typicals are.... and those are the days I run into parents with 2

affected kids and an additional child with cancer (true story). Count your

blessings my friends.

Much Love,