Monday, October 06, 2008

Informed Decisions

Stanford University is developing a safer test for children with aneuploidies, particularly Down's Syndrome. The extra chromosome is picked up in the mother's blood, instead of an invasive test that risks injury of the fetus or even miscarriage. Part of the "good news" about the new test is that it can be done very early in the pregnancy, "giving women more time to make choices about their pregnancy."

Carol Boys, chief executive of the Down's Syndrome Association, said: "There is no question that these non-invasive tests will be introduced in the next few years.
"It's therefore incredibly important that potential parents are given accurate information on Down's syndrome before they make a choice about whether to terminate or not.
"We don't consider Down's syndrome a reason for termination, but we recognise that bringing up a child with Down's syndrome isn't right for everyone.
"The more informed parents are, the better the position they are in to make the choice that is right for them."

Carol Boys is absolutely correct. Parents need to be informed, and make an informed choice- not a choice out of fear of the unknown... fear of Holland.

I have written on this subject before, but revisiting this theme is something I find worth doing. Not everyone reads old blog posts, and each day there are new parents in our little corner of the world- the one labeled "special needs."

They need to be informed. We all do. However, I am especially keen on making parents informed before that baby is even born. The decision to have a child- any child- should not be based on fear. It should be grounded in solid, reliable, and complete information, as complete as we can make it. Raising a special needs child is a special challenge. However, raising any child is a challenge. The challenges are different, the experience of parenthood may be different, the friends you make and the ideas you value, the insights you gain and stories you tell may be different, but different is not worse.

If parents knew the supports available, the resources out here, had clear understanding of their rights and what to do to cross those hurdles and meet those challenges, would raising a special needs child be such a terrible thing? If people understood that a person's special needs, even when severe, makes them no less a human being, no less an asset to the human race, would there be more resources available?

In all those "So You're Expecting!" books, we ought to have a chapter, "What if my baby has special needs?" The opening of that chapter should be: "All people have special needs. The trick is knowing what resources are available, and how to use those resources to best support and raise your child."

Without that understanding, the choice made is not informed by facts, logic, and information. It is made from fear.

To all you expecting parents out there:
Be prepared. But don't be afraid.


bobbie said...

This is really a wonderful post. And I think the most important part of it is that "All people have special needs." If only more of us could realize that. If only all expectant parents could know and accept that, and go on without fear to meet whatever challenges there may be, to raise their child and experience all the joy in watching him/her grow.

Stimey said...

This is an absolutely beautiful post.