The measure of a man (or boy)

It's that time again. That time when Kieran has his annual evaluation for First Steps. The time when I remember that it's been two years since we received his diagnosis.

I understand the need for yearly evaluations. I do. I understand that parents of typical children look forward to them because they tend to bring good news--"you've successfully met the goals we set for you and are therefore graduated from the program and no longer in need of our services." And I also understand that they provide a way to find out which areas are strengths and which are weaknesses needing work.

But that doesn't mean I have to like them. As the therapists spent their requisite hour with Kieran, asking me questions, and observing him, making their little checks in the boxes on the evaluation sheets, and tallying up the "points," they finally announced that, yes, according to their calculations, he was still delayed in just about every area.

And I found myself wanting to say, "But . . . but . . . but isn't there something you can say he's good at? Where, for instance, are the check marks for 'can hum any tune after hearing it once'? Where are the boxes for 'learned the Doxology after only hearing it at church and knows that it ends with aaaaaaa-men'? What about the points for 'never met a stranger'?" But I didn't. Instead, I signed the forms I was supposed to sign, and the therapists went on their way.

I'm not the only parent of a child with special needs who feels that "pang" in their heart after an evaluation. Another father of a child with a disability wrote:

In the pile of papers I referenced yesterday were some old test scores. Since Paul attends public schools, they assess his educational progress as mandated by various federal and state bodies. The things they want to measure, he can’t do. His scores on reading, reading comprehension, math, math concepts and the like were as low as you can score and still be breathing.

The things they can’t measure – like his inherent, God-created dignity as a human being – he excels at. I used to cry when those came in the mail every year. They still make me sad, not because of how severely disabled they ‘objectively’ show him to be, but because this is the cultural measure of his worth.

And therein lies a danger to children with disabilities not yet born. These are the objective measures of ‘reality’ that doctors and social workers and university professors understand – and which are communicated to parents who live in and breathe the air of this culture. The decision to do away with such seemingly worthless human beings then appears to be obvious.

No, let us talk about what is truly real. God creates some to live with disabilities (Exodus 4:11), he knows all their days (Psalm 139:13-16), he will supply every need (Philippians 4:19), and he knows the end from the beginning (Revelation 21:5-7).

After the therapists went on their way, I found myself singing the chorus to this old 4Him song:

This world can analyze and size you up

And throw you on the scales

They can IQ you and run you thorugh

Their rigorous details

They can do their best to rate

And they'll place you on their charts

And then back it up with scientific smarts

But there's more to what you're worth

Than what their human eyes can see

CHORUS

Oh I say the measure of a man

Is not how tall you stand

How wealthy or intelligent you are

'Cause I found out the measure of a man

God knows and understand

For He looks inside to the bottom of your heart

And what's in the heart defines

The measure of a man

Rewriting history

In my spare time, I enjoy playing a friendly game of Scrabble on Facebook. My main opponents are sisters-in-law. For me, it's not really about the competition but about keeping my brain active and giving me something to think about other than diaper changes and therapy appointments.

With some of the games, we like to add an extra brain-boost by using the word(s) played in a sentence in the chat box. In a few instances, those sentences have turned into stories. I just finished a game with SIL Rose in which we, somehow, ended up rewriting history. It went a little something like this:

(S) Once upon a time, George Washington chopped down a cherry tree with an ADZ . . .

(R) All the FEMales nearby were very impressed.

(S) From the wood, he made a beautifully ornate SALVER on which he served ....

(R) roasted HEN with sage.

(S) This went well with the filleted COBIAS he pulled from the Delaware River, while he was crossing it,

(R) And thanks to that FABulous wool coat he wore...

(S) he was, anachronistically, WIRED and able to communicate quite well with his troops.

(R) It was a change from the GO-GO boots he was used to wearing.

(S) Ah, but he loved those boots, as did Martha -- she found they really got his MOJO going

(R) --which he needed since that cold cold trip across the Delaware really made his nose fill up with SNOT.

(S) "Martha, my dear," he said with a GLEAM in his eye, "Don't you think it's time for ..

(R) you to take a few TURNS walking the dog after dark?"

(S) "Oh, dear Georgie," said Martha, "Don't be such a nAG. You know I don't like walking the dogs because...

(R) of the TAXER it is on my poor back. If only...

(S) I had a few QUID TI pay a lAD to walk them for me . Do you think you could work some overtime so we can pay a dogwalker, my dear?"

(R) "But Martha, my dear, you know I'd rather smoke a STOGEY than earn extra to pay for dogey."

(S) "Oh, George, you're such a romantic POET. Do it again, if you can."

(R) Then said George, "My hair is thick. I keep it SLICK. The fleas I flick before they stick."

(S) Martha, grossed out by George's latest poem, ran blindly into a QUAGmire of sand, just outside their house.

(R) George thought her to be a bit NAIVE as to the realities of life, so he shrugged his shoulders and said, "If freedom of speech is taken away, then dumb and silent we may be led, like sheep to the slaughter."

(S) While George was waxing eloquent and making speeches that would eventually find their way into the history books, Martha was looking for something that would help her HOVER above the sand. She finally found ...

(R) a 5 foot length of homespun wool wound AROUND a nearby branch lying next to George's axe.

(S)"Pray, THEE, my dear, please stop pontificating and start helping me by pulling me out of this quag with that wool."

(R) "PEW! That quag smells like PE! Grab hold quickly, Martha dear! I'll rescue you."

(S)"Thanketh thou. How MANY times do you think you'll have to rescue me in the future, GW?"

(R) "Let us not beLABor the point. I shall never reLAX as long as my dearest Martha needs rescuing....or our country."

(S)"The country--wION earth is it always about TI country!?! What about me? What about my needs?"

(R) "Quite frankly, my dear, and it KIlls me to say this..."

(S)"Wait, Georgio, don't say ID. After all, you're about 200 years too early to be saying such a line."

The advantages of speech therapy

From the time we enrolled Kieran in First Steps immediately after his WS diagnosis, we wanted him to have a speech therapist (since there are known speech delays in those with WS, we wanted to be proactive in getting him help). Sadly for us, speech therapists are few and far between in our area. We had one for a few months last year but she quit First Steps and so we were back on the waiting list.

Finally, in June, we got another speech therapist. Mrs. Jane came highly recommended from our OT, and I've been happy with her work with Kieran and her suggestions for us in working with him. One of those suggestions is to offer him more chewy and crunchy foods (e.g., those round Snyder's pretzles) to strengthen his jaw muscles to help with his speech.

While I was grocery shopping, I picked up some Rice Krispies, thinking I'd make some Rice Krispy bars to fulfill the "chewy" part of therapy. This afternoon, we melted the marshmallows, added the cereal, and let them cool. And then we ate some.

Who said therapy can't be fun -- and delicious?

New Arrival

A few weeks ago, as Seth was hypermiling his way home, the Golf suddenly decided it didn't want to go into fifth gear. And so he drove it the whole way home in fourth gear and determined, upon arrival and inspection, that a new transmission was in order. Since he does most of the work on our cars himself, he ordered a new transmission and began driving my car, the Jetta, to and from work while the Golf waited for its transplant.

After a few days of driving the Jetta, Seth called me from work with a good news/bad news scenario. The good news was that I wasn't driving the Jetta. The bad news was that he was driving the Jetta on his way to work when its transmission decided to follow the Golf's off to the Great VW in the Sky.

He'd been warning me for months that the Jetta's transmission was going. And we'd been talking about replacing the Jetta with something bigger since fitting two big car seats in the back seat is a tight squeeze all around. But we hadn't actually done anything about it since I didn't really want to let go of the Jetta, and we wanted to keep the money in our savings account intact because the plant where Seth works is closing and his job situation is therefore tenuous.

So, the Jetta's transmission failure forced our hand, and we began to look at a bigger vehicle to replace it. Seth absolutely and in all other ways refused to even consider a mini-van (apparently, he's not the "soccer mom" type), so we checked out SUVs.

My main criterion was that it had heated seats. I've had that criterion for the past several vehicles, and for whatever reason, have never seen it realized. With our blue car, the passenger seat was heated but the driver's heating mechanism was broken. I spent many cold winter days trying to figure out if I could drive from the passenger seat (I couldn't).

That was also my criterion when we replaced the blue car with Jetta. However, since the Jetta Seth chose didn't have heated seats, he promised to put one in the driver's side for me. He never did.

So, I was hoping that with this car purchase, I'd finally realize my dream machine with heated seats. And, after perusing the car sites and visiting the car lots, this is what we ended up with.

A 2007 Ford Escape. It doesn't have heated seats.

However, Seth assures me that with the $200 we saved because we paid cash for it, we can purchase a heated seat cover. I'll let you know this winter if that ever happens.

Three months

Where does the time go?

You know you live in a holler when . . .

. . . your neighbor, who recycles scrap metal for money,

 hauls off your old washing machine like this.

Oh yes, he did.

Optimistic pessimist

I suppose I should stop saying that I see the glass as half-full and admit that I'm a pessimist. The glass is almost empty, for crying out loud.

When Kieran was diagnosed with Williams syndrome, I read as much as I could on WS and my pessimistic tendencies kicked into overdrive. It was easy to become bogged down in the things those with WS aren't supposed to be able to do. And it was easy to look at the goals we were setting for him in his therapies and think, "Will he ever get this?"

When the therapist says, "Oh, he'll get it eventually--just give him time," I find myself thinking, "Yes, but he's not a typically developing child who just has a few delays in some areas. He has a GENETIC DISORDER. He's not guaranteed success." I know--not the best attitude to take, is it?

Lately, however, he's been reaching the goals we've set for him. He walks, he runs, he jumps, he's started talking, and just today, he said, "I have to go." Seth had started potty training with him around the time that Cael was born. I figured that, at this stage, it was an exercise in futility since he wasn't really expressing his wants and needs and wouldn't tell us when he had to go. We've just tried to catch him in the act and sit him on the pot to finish. But today, he stood up, and said, "I have to go." And he did. On the pot. And there was great rejoicing.

He's also been doing really well at puzzles lately. Visual-spatial deficits are common among those with WS and they aren't supposed to do well at things like puzzles. But all of his therapists have been working with him on them (as have we), and just in the past few weeks, he's been able to place the puzzle pieces -- even on ones he's encountering for the first time -- in their appropriate places.

And so, I've decided that I really need to get a handle on the pessimism and start approaching his life in a more half-full way. He will learn to feed and dress himself; he will learn to color in the lines; he will transition to a big bed; and he will learn to use the potty. He will. It may take him a little longer to learn things, but he will.

And, down the road, when the goals get bigger--reading, writing, going to school--we'll work just as hard at mastering them. He may not be guaranteed success, but it's up to us (while leaning on our gracious Lord) to make sure it's a viable option.