Mc Carthy book and The Cure

[Guest guest]

When my son was seven I thought I " cured " him also. I even wrote an article

to that effect at the time and had it published in the Autism Society of

America. Like , I had only good intentions and truly thought my son

was " cured. " But what I didn't realize was that even though he was so much

better, he had a long way to go. Seeing the difference from the weird and

bizarre behavior he used to exhibit made me think he was better, and he was.

It was like night and day, but he wasn't done yet. I'm not sure we are

ever done teaching any of our kids (normal or afflicted). The social,

reading comprehension and friendships were the last to come. His first

" true " friendships that I didn't help facilitate did not happen until he

went away to college.

In my opinion 's child probably has a way to go and is not fully

recovered. Sometimes you don't realize the true deficits in these kids

until they are older and have more complex social issues to deal with. But

it sounds like Evan is doing quite well and on his way. And aren't we all

grateful for all the attention she has brought to help all of our kids? By

reading her book you can tell has been in the trenches like the rest

of us. Her books are comforting in that it makes the reader feel not so

alone in this overwhelming mission to help our children.

My son is twenty and 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. 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. But what makes me most proud

is that my son is 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.

He was just recognized for his community service by Hillel and awarded a

congressional service award by a congressman in front of 250 people. There

were only four students getting recognition and he was the only one from his

university. I was busting at the seams because I was so proud of him and

all he has accomplished. When he was first diagnosed, I was just hoping for

an independent life not in a group home or institution. But he surpassed

all my hopes and dreams. He will have a normal life thanks to Dr. G's

treatment and the ABA we did over the years.

When was first diagnosed I was told he would never be " normal, " and

would probably need to be institutionalized. As a result of medical,

behavioral and educational interventions, he now attends a major university

on an academic scholarship. He is president of the Jewish Student

Association and recently joined Sigma Chi Fraternity. He maintains a 3.8

GPA, drives, goes to parties, and has an active social life.

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 the 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.

Then there are the parents who would do anything to avoid a meltdown. I

used to be one of them, 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 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 after starting ABA. 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. But you have to shake up their world and not tolerate the

obsessive behaviors. Unfortunately the real world is not the same all the

time, and as they get older they are no longer little and cute.

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. Teaching them

everything in the beginning is such a overwhelming task. There was so much

to learn sometimes I didn't know where to start. In time I learned to

concentrate on one behavior at a time until it is mastered and then move on

to the next. It was kind of like bringing a stroke victim back.

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 look like he responded at all to anything.

It was not until much later when he was significantly better that I realized

he was learning back then. 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 Corpus Christi, Texas.

Marcia