My low-functioning autistic son is 40 years old. He did attend a public
school class for 5 years..... a long time ago! My husband and I also have
three daughters. When our son was in school we used to be critized by the
teachers for treating him like a 'regular' member of the family. We were
told that we wouldn't be able to keep him at home much longer and since he
was going to be institutionalized we should be training him to live in an
institution. My reply was that our home was a home, albeit different from
anyone else's, and it was NOT an institution. He WAS a member of the family
and that as long as he lived with us we would treat him that way.
Furthermore, when he was institutionalied, the staff at the institution would
have the responsibility of training him to live there... that would be part
of what they would be paid for... and noone was paying me!
From the time he was three until as recently as about four years ago,
professsional genius's along the way have told us he should be
institutionalized when we were not asking for advice nor complaining about
his behavior. On occasion we have tried to figure out why this might be
important to them... the conclusion we usually come to is that THEY would
have great personal problems dealing with the challenges he presented... and
I'm sorry but that is their problem, not ours. I am not nor have I ever
wanted to be a psychiatrist!
I know that there are some good people out there trying to care for very
handicapped individuals in institutional settings and I am sure that there
are some who succeed. I'm also sure that some of those children/adults fall
through the cracks no matter how much good people try to work with them. My
husband and I have always agreed that if we ever see a better placement for
our son than our home, great... we will place him there. In the meantime we
are and will remain his caretakers as long as we are physically and mentally
able to... with no apologies... AND we hope that before we die there will
indeed be a place for him somewhere where intelligent, trained staff will
understand the immune system issues that are his life and where he will be
able to be taken care of with human decency and respect.
The last 10 years of gf, then cf and treating yeast, using vitamins,
supplements, and now amalgam removal(I hate what mercury has done to
thousands of innocent people), have improved the quality of his life so much.
We KNOW this would not have happened if we had given him up to an
institution. We also KNOW that if we had to give him up right now because of
our own health problems, all the good we've been able to piece together for
him would be down the tube immediately and that by the end of a week, he
would be drugged out of his gourd and tied to a bed by the same 'carefully
taught' professionals who are telling you young parents that diet can't
possibly help your children.
Back in 1965 I was kicked out of a doctor's office three times one winter.
Each time I told him there was something very wrong with my son... the third
time I was told that there was nothing wrong with my son but that there was
with me... I was an overanxious mother. He told me to take my son and get
out of his office because there were 'sick' children waiting to be seen.
That was the beginning of several long distance moves looking for a diagnosis
and then treatment. Three years later we had a diagnosis of "autism, but not
Kanner's syndrome because you have such a good family." We had about 10
months of 'experimental behavior analysis' (fortunately, no negative
reinforcement stronger that simple time-out) and we realized we were on our
own. We set priorities for education and health for our daughters as well as
caring for our son and determined we would keep him at home as long as we
could.......LOL, we were hoping we would be able to manage him for three or
four years at least! If we had known we would still be caring for him this
many years later, I'm sure it would have been too overwhelming to even
contemplate just as it must be for most of you today.
Well, we've survived ... and so can you, whatever the decisions are that you
will have to make.
We still each have to make our own decisions and at the end of the day we
know we have done the best we can for that day. It is seldom easy. I've
seen famillies with children who are so much more damaged than my son. Family
circumstances can make it impossible to continue caring for a child at any
moment. Neither the best intentions nor money can make it possible
sometimes to manage the problems presented. Parents may need to find a
placement because they DO care about their child, not because they DON'T.
Unfortunately, we are only human on our best and worst days. The heavy
responsibility of autism doesn't exempt us from the normal problems of every
day living like raising other children, job lay-offs, affordable housing,
concern for elderly parents, even falling down and breaking a leg(oh,
yes!)... and all the other stuff that makes up the daily trials and
tribulations of our friends.
Well, if you've made it this far, surely you can manage to do the diet one
more day or fight the good fight with your school or beg your child's doc one
more time to start helping you heal your child's gut, or put together a
snack pack for the grandparents or
read one more book yourself....
We think of recovering as a process... for our son the extent of the recovery
is an unknown... goals and HOPES change along the way... moving backwards two
steps before moving forward sometimes happens... we keep learning...we revise
our plans with new information... we keep moving our son toward wellness as
best we can... we smile about each new skill... and often, still, after all
these years, we weep for what was our son's birthright.
Dona |
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