When I think back to when Beth was born, I get the feeling of isolation. Not that we were isolated necessarily, but compared to today I remember it as a lonely, isolating time.
I've written about this before, how if you needed help with something you picked up the phone and called. If you were curious about your child's diagnosis, you went to the library and looked through the card catalog for the books about children with special needs. Or in our case, 'Mongoloid children.' Yes, it was called that even as recent as the 80's.
My 1992 Websters Dictionary says, "Down's Syndrome: mongolism, a type of congenital mental retardation." That's what we had to base our ideas of the future on.
Nowadays parents ask a question on Facebook, "My child is doing such and such, do your children do this? What experience have you had with this?" And in minutes there is a thread of comments a mile long. Encouragement, resources, referrals.
I sometimes feel a little sad that we didn't have those kinds of connections. I wonder how different Beth's life would be if we had.
I guess we're coming up on World Down Syndrome Day. I said that slowly, out loud to myself the other day. World Down Syndrome Day. World. The United Nations has declared it so.
The United Nations!
My first thought was, 'the United Nations know we exist??' This is so mind boggling to me. I think of when Beth was 3 and she was playing in the front yard with the neighbor kids. The United Nations was the last thing on my mind. Let alone the world. I was just living day by day, trying to navigate this world of special needs. What did I need to do tomorrow? Why did I need to do it and what impact would it have on my daughter?
But I guess some parents decided more people needed to know about our kids who have special needs. They've advocated and lobbied for support and acceptance and awareness. Something I could never do, but am so thankful that they did. And now we have World Down Syndrome Day. That's just remarkable. Such an accomplishment.
Well done parents. Well done.