At what age was your child recovered?

[Guest guest]

Kristy,

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. And his killer smile and good

nature make up for that. He wants to go into engineering 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 14 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. Somewhere along the way he started doing

the things he needed to do gradually and one thing at a time. 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 hasn't gone on a date alone or had

a girlfriend. But he goes in groups and shows all the signs. I still worry

that he won't ask anyone to prom, because he is scared of rejection. Our kids

have had a lot of rejection in their lives. But I guess it isn't the end of the

world if he doesn't go. I'm hoping he will blossom socially with girls in

college. My first child (the one without autism) did not walk alone until 15

months of age. I remember crying in the doctor's office and asking what was

wrong with her. Actually she was just too smart and didn't want to walk alone

until she was sure she didn't fall. It doesn't matter when they learn to walk,

just as long as they learn. We all learn to read at different times, but that

is okay just as long as we do.

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.

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. Just

don't try to change all their behaviors at once. You need to concentrate on one

behavior at a time until it is mastered and then move on to the next. Pick the

one that drives you the craziest and start with that one. 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 and

he did need to eat. Pick your battles, but you do need to make them do the

things they need to do.

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