is 8...

[Guest guest]

Hello all,

Today is ' 8th birthday. He is tucked happily in his bed, so I

want to take a minute to express a few things that I have on my heart.

We have had such an amazing trip during the last 4 years. Some of it

has been heartbreaking, some enlightening, some inspiring; but all a

part of the tapestry that is becoming my life...and his.

is doing so well right now. He is making progress, finally,

after plunging headlong into oblivion for two and a half years. Those

two years were full of the most incredible agony...I don't think I

can even describe what happened to us during that time. I would not

have believed that people could exist in that state, had I not gone

through it myself. After years of working with children with " rare "

disorders, I find myself among those parents who have the unfortunate

experience of hearing expert after expert say, " There is nothing I

can offer you " . The pain that comes with those words....This is my

baby. There is supposed to be SOMEONE who knows what to do, but not

with CDD. We have had to find a way ourselves, and whether by luck or

skill, I think we are finally on a road that leads upwards again.

Either because it is the course of the disorder or because we have

found a plan that actually meets some of his needs, is ever so

slowly moving back toward the world he so completely left behind a

couple of years ago. He is trying to talk after losing all of his

language. He is relating to his siblings after seemingly losing

sight of their existence. He is aware that his aggressive actions

can hurt another person and tries to control them. He is happy, after

3 years of fear, anger, and misery. That is the best part; he wakes

up with a smile on his face almost every day now. I think that is

the most important thing we have accomplished...he seems genuinely

happy again.

I don't know what the next eight years have in store for . I

am hopeful that he will continue to step gingerly toward our

world...but the literature is so negative for CDD that I am almost

afraid to hope. We will keep fighting to help him find his way

back...but we will also, as necessary, allow him to stay where he has

to be in order to feel safe and happy---I have learned that I cannot

drag him into a place where he has no interest in being, so my job as

I see it is to make this place we call " normal " as appealing and

unthreatening as I can so that he will be willing to risk a move in

it's direction again.

We recently had a discussion about the different perspectives parents

can adopt when raising a child with autism. It was stated that there

are those who believe that there is a different child hidden under

the autism and those who believe autism is an integral part of who

the child is. I think I fall into both categories...I know there is

a different little boy under these odd behaviors---he used to live

here. But I also know that this disorder has shaped the feelings,

ideas, needs, and beliefs of that little boy in a way that will never

go out of his being. If he " recovered " tomorrow, he would never be

that other little boy again. Too much has happened to him. He has

lived a nightmare that no child should have to endure, and that will

never go away.

is an everchanging miracle to me. He is beautiful...he is

sweet...he has an innocence that most 8 yr olds have long since left

behind in their quest for growth and maturity. He is my baby, and

there is no way I can express to you how I feel about having him in

my life. I love all of my kids, and would do whatever is necessary

to help them have all that is out there for them in life...I often

wonder what is out there for . Whatever it is, we will go

there together, for as long as I can, and we will look for the best.

He deserves it.

Thanks for listening.

Raena