Our Babies

Our Babies
Luke and Claire

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sunday, July 1, 2012

Luke's Progress


To qualify for speech and occupational therapy, Luke has to receive an annual evaluation to track his progress. This year he had to respond to social cues, say/sign the words he knows, stack blocks, and complete various other two-year-old appropriate tasks. The ONLY reason he qualifies for ANY services is simply because he has Down Syndrome as his medical diagnosis!!! Otherwise, he is doing so well that, despite being a little delayed in some areas, he wouldn't qualify for services. This is AMAZING news!!!! Patrick and I sat down with his case manager, occupational therapist, speech therapist, and lead teacher, and here's what they had to report:

- Luke is interacting great with his peers. He is very sociable and has lots of friends.

- After Ms. Diana (teacher) sings a song to signal the start of free play, Luke's favorite two activities are either the art center or instrument center.

- He loves to have dance parties!! (tell us something we don't know!) His favorite songs are "If You're Happy and You Know It" and "Old McDonald". He can even do all of the hand motions to about 5 songs.

- He signs about 15 words including: eat, more, drink, potty, swing, open/close, please, sleep, etc. We are even working on putting a few signs together. For example, "More drink", "please read"

- He says about 10 words (in Luke-speak) including: Momma, Daddy, ssss (for sister), ah-puh (airplane), dog, dce (dance), etc.

- Luke is walking all over the place with no problem. Our next goal is to perfect jumping and walking up and down stairs with less help.

- He's starting to identify animals and animal sounds. So far, we have dog, cow, and sheep mastered. The others are a little hit and miss.

We are so proud of how well he's doing, and we can't wait to see what he learns next!

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