Dynamic!

I am enjoying all the wonderful words I am hearing from Wade the last while which he puts together in ways that just tickle my funny bone.

Our music therapist has started using the Music for Little Mozarts piano course with Wade.  It incorporates the adventures of Beethoven Bear and Mozart Mouse along with music concepts and Wade is LOVING it.  He learned the dynamic signs forte (loud) and piano (soft).  

One evening I was talking to Chris in the living room while Wade got ready for bed.  In the background I heard Wade saying something very loudly, but I ignored him for a bit while I finished talking with Chris.  When I finally went to see what Wade wanted, he said reproachfully, "Mom!  I was forte, LOUD!"

(Yes, yes, I KNOW, dear!!!!)

In our other summer adventures in learning, we finally got our Numicon Math Kit 1.  Down Syndrome Education International recommends using this math with our children.  Numicon was not originally developed as a special ed curriculum, but I've been in contact with a special ed teacher and researcher from Virginia who has had amazing results using this math with her students.  She is currently doing some research projects that will evaluate the effectiveness of Numicon in comparison to other math programs for students with disabilities and math difficulties.  Wade and I are eager to get started learning more about using it!

The summer writing practice continues.  

And so do the oral motor exercises.

Even for Murphy.

The Graduate

Wade graduated from his Bible Play School Pre-K class last week.

Next in line!

Posing with teachers.

  Celebrating with his best friend Bryan.

Performing at the program.  Wade is the letter S in J-E-S-U-S.

Back home.  Big brother swiped the outfit.

Phantom of the opera...or something.

Summer schedule coming up!  Stay tuned.

Adam Wouldn't Approve

...And then there are days

when you just don't care what everyone else thinks

and you name your dinosaur "Frog".

Bionic Boy

Dinosaur eggs...

and a Purple Dinosaur Bridge...

and the Sleeping Green Monster...

What could be next?

Um....this is starting to look ominous.

Oh, no!  They turned him into a robot!

And then they said, "Good night!  Sweet dreams!"

The American Academy of Pediatrics now recommends that all children with Down syndrome have a sleep study done by the time they are 4 years old.  So Wade had his done Friday night.  How you can have that many wires coming from your head, face, legs, chest, and big toe and still have anything that resembles a night of sleep is a wonder to me!

But he did!  

Daddy stayed all night with him and said he was sleeping within 10 minutes of crawling into bed.  

Now we are waiting on the results.  Apparently, a rather high percentage of children with Down syndrome have problems with sleep apnea.  We have questions about the quality of Wade's sleep at times.  He goes to sleep quickly but then sometimes tends to wander out of bed and fall asleep again instantly in odd places.  Why does he get out of bed when he's obviously still very tired?  We don't know.

A Perfect World

I dislike intensely the politics of most groups, secular and religious alike, when it comes to issues like abortion.  Behind the name calling and finger pointing of both sides, somehow in the heat of the argument, we seem to quickly degenerate into the land of the inhumane.  And no one benefits from that.

So, most of the time, I would rather allow this blog to be simply the story of what one family is learning, existing for those who will find it when they need it the most.

But....

....there are times when I feel the urgency of a message that must be heard because it is not only the message of an extra chromosome, but is also the heartfelt cry of us all.

Please don't destroy me because I am not like you.

This week Kurt Kondrich has written a thoughtful article entitled "Eugenics as a Human Right?"  As you read it, can you help but ask yourself, "When will they come for me?"

In the meantime, while you're thinking, take a detour over here "In Honor of Carissa" and just for a moment allow yourself to imagine: What if everyone thought like Carissa?  Would the world be more, or less, perfect?

Picture This

I'm hiding, I'm hiding, and no one knows where...

'cause all they can see are my hands and my hair!

What do I do with this extra button?  It's been like this all day!

Flying....

....high.

Here comes the pitch...

...off with his head!

Let me try that trick!

The hat says it all.

For some reason, the lid won't go shut on this box.

"You have to learn to think outside the  box," everyone says. 

 But there's something to be said for thinking inside the box too.

Miss Muffet is no longer here...

...but the Four Guys still are!

We'll never outgrow Dr. Seuss...

....or sweet nothings!

See you....

...later!

If You Could Go Back

After we had spoken to a group of medical students, one of them asked, "If you could go back to before Wade was born, what would you tell yourself?"

Here are the answers--from us and from families everywhere, who know now what we didn't know then.

Play Date

Oh, look!  A pretty girl! 

Let's play!

I like her!

I think she likes me too!

Yep, pretty sure!

Oh, wait!  There's another girl!

And she's got a phone!

I'd better make sure she has my number...

...so she can text me.

I went home and tried to text her back....

...but somehow, it didn't work.

Guess I'll delete.

Hey, I Can Relate to That!

In the evening, as usual, we're discussing Wade's schedule for the next day.  Wade tells me that tomorrow is Tuesday and I say, "What do you do on Tuesday?"

Wade thinks a little and then says, "Let's do Friday!"

When Will They Come for Me?

Disability is the only minority that any of us can join in an instant.  And until we build a world that includes everyone, we're all going to miss out.                                                              --Lawrence Carter Long in the documentary Monica and David

This week Time magazine featured an article on Down syndrome concerning the ethical debate that is raging over advances in prenatal testing.  A new blood test from Sequenom, a biotech company based in San Diego, makes the prenatal discovery of Down syndrome a simple process which carries with it the ability to reveal the extra chromosome as early as 10 weeks gestation with nearly 100% accuracy. Similar testing will likely soon be available for other chromosomal deviations.

It is true, that prenatal testing as a means of preparing for the future can be a good thing. Never has there been a world so prepared for a child with Down syndrome.  Early intervention, trained therapists, and myriad resources in the forms of books, blogs, and support groups all are at our fingertips.  Projects like I Have a Voice, cartoons like Punky, and events like the Buddy Walk serve to remind the public that human beings are not made from cookie cutters  For each of us then as individuals, the future would seem to be a bright and exciting place.

But I fear that the main purpose of this early and efficient test is aimed not to prepare for a future of diversity, but to destroy it.

And I wish that I could reach out to everyone who receives the news of that extra chromosome and say...I know.  I know how scared you are.  I know that you wouldn't choose this now.

But I also know that 99% of families love their children with Down syndrome.

I know that 88% of siblings feel that they are better people because of having a sibling with Down syndrome.

I know that 99% of people who have Down syndrome themselves are happy with their lives.*

And I know that there are waiting lists of loving families who are hoping to be able to adopt a child with Down syndrome.

A prenatal test can't tell you that.  A textbook analysis of that extra chromosome is only a biological description.  It can't tell you the personality, the joy, and the unconditional love that seems to come as part of the package.  It also can't predict the fierce love that will overtake you, the strength that will become you, the great and wonderful family of diversity that will join you.

A prenatal diagnosis could never have revealed to me the joy with which Wade greets each day.  It couldn't have whispered the happiness of hearing the words, "Good morning, Mama, good morning!"  It could never have communicated the pure pleasure of the enthusiastic thankgivings that pour forth every day from Wade, no matter whether we have given him a cookie or a chore.  It couldn't have pictured how his eyes curve into happy half-moons when he laughs or how the warmth of his hug makes every homecoming heaven even though I've only been away for 15 minutes.  And it could never have hinted of the aching wistfulness I often feel--not for the life we lived without Down syndrome, but for the life that Wade lives with it.

It is a life lived with a generosity of spirit that I wish could become my own.  For his is a vision that includes a friend behind every door, beauty in a crumpled leaf, and gratitude for a crust of bread.

Naive, you may say.  He just doesn't know enough to know better.

Maybe so, maybe so.

But it is through his naivety that I have been shown the pure goodness of unadulterated love.  And it is because of this innocent example that I am learning what it is to be truly human, truly imperfect, and truly loved.

It is a universal message that we all yearn to hear.

And so I ask you to consider the future--the future of us all--when I say, "Please, please don't kill the messengers."

First they came for the communists,
and I didn't speak out because I was not a communist.
Then they came for the trade unionists,
and I didn't speak out because I was not a trade unionist.
Then they came for the Jews,
and I didn't speak out because I was not a Jew.
Then they came for me,
and there was no one left to speak out for me.

                                                                --Martin Niemoller

 *Statistics based on research by Dr. Brian Skotko published in the American Journal of Medical Genetics