Marie Bristol, Director of Family and Preschool Research and Services at the School of Medicine - University of North Carolina, at the NATIONAL DOWN SYNDROME CONGRESS' CONVENTION in October, 1989, gave this message to parents to relay to the "professionals" working with their children:
Remember that he is, first of all, my child.
Let me see him smiling in his sleep.
And let me think how handsome he is-
Not about how delayed the smile was in coming.
Help me not lose sight of my son In the sight of his
limitations.
I know that you care for my child, And that you work
hard with him.
I need your expertise to help him become All that he
is capable of being.
You need my help in understanding who he really is.
And in the following through at home with things that
are important.
Remember though, that you send him home at night.
And have weekends off and paid vacations.
Let me have the luxury of having a vacation...
Sometimes physically, sometimes emotionally.
For a day---a week---a month--- Without your judging
me.
I will be there for him when you are long gone.
I love my child with an intensity that You can only imagine.
If on a given day, I am tired or cross with him, Listen
to me.
Lighten my burden. But do not judge me.
Celebrate with me.
Rejoice in who he Is and who he will become.
But forgive me if, from time to time, I shed a tear -
For who he might have been.