Lessons I've learned
I knew that we would be told F.'s dx was PDD, only because
I had come across
folks online whose kids had it. I knew "just enough to be scared
out of my mind,"
as I have often put it, but people around me were amazed to note
that I didn't
openly grieve. My excuse was that I was "too busy" to grieve.
With
all I had to
learn about PDD, autism, language delay, services, funding, etc.,
I
found no
time to grieve. When I did shed tears, it was from exhaustion and anger.
After
all, I've lived in the special needs world all my life, having had hydrocephalus
from birth. *How*, I wondered, could God allow this to happen to me AGAIN??
I can recall my months of wrestling with this.
Well, F. is improving at an amazing pace, and because of this, my health has
improved dramatically as well. Life is GOOD, much better than I ever thought
it
could be two years ago, when we first got the eval results. This brings
me
to the philosophy that it is pointless and even insulting to mourn the way a
child is, whether from autism or anything else.
I have never enjoyed admitting it, but hydrocephalus pervades through every
aspect
of *my* life. It is because of hydro that I am who I am, and without it,
I would
be a whole different person. Now I know that this is true in regard to
F. as well,
and I know how I would feel if I knew my parents had wished my
hydro could be miraculously
cured. When I was a kid, I wanted that, desperately.
Now I know that, even if a cure were found
tomorrow, I'd still have the
headaches,
the seizures, the concentration and organization difficulties, the
short-term memory
issues, and all the other effects I have. The only thing
I'd never need again is
shunt surgery. Well, I haven't had any for almost
18 1/2 years! What difference
would it *really* make?
My conclusion in mulling this over is, very little. I think this
is what comes
of acceptance, and I realize that many of you have kids with far greater
daily
issues than F. has, but I hope my experience helps some. I do fear
that F.
will struggle through life, as I have, with school, relationships,
directions,
and
other things, and it upsets me to think about it, but he will have someone
who can
help him with first-hand knowledge of how to cope--something I did
not have. I hope
this makes his life better, and I hope I can prove to him that
I love the little
boy he is and can now say that I wouldn't change him if I could.
Love to all!
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