What's in a Label? Autism

As I've shared before, my 13-year-old daughter has Cornelia de Lange syndrome. It's a rare genetic syndrome resulting in growth delays, developmental delays and autistic-like behaviors.

At least, that's the way I used to describe it.

Now, I may be changing labels and "upgrading" her diagnosis. Why? Because we just got the test results back from a study we participated in through Children's Hospital of Philadelphia looking into behavior and autism in CdLS. Was there a higher incidence? Were there risk factors?

So, in 2008, we filled out several behavioral evaluation checklists. In February of 2009, I spent three hours on the phone with a researcher answering another battery of questions. And now, in July of 2010, we finally have copies of the data reports.

The verdict? Her scores are above the cutoffs for a suspected Autism Spectrum Disorder diagnosis and a full evaluation with her educational and medical team is strongly recommended. Anna will be going back to school in a few weeks. I'll pass the information on to her teachers and we'll see what they have to say before I contact our pediatrician.

In the meantime, what would Autism mean for our family?

As I discovered a long time ago when she was diagnosed with CdLS, a label doesn't change who Anna is. Nor how much I love her. However, a new label would give me another avenue to explore in trying to understand how she thinks. I have a lot more to learn but I might even discover ways to help her cope with transitions when her routines fall apart.

Will others understand her better if she was labeled with a more common condition than CdLS? Will it open doors to new educational strategies? How many new people will I meet as a result of learning more about autism?

What about you? Have you ever received news that turned your world upside down? Do you think that labels are important? Why or why not?

His Eye Is On the Sparrow

"Do not fear therefore; you are of more value than many sparrows." ~Matthew 10:31 NKJV

We just returned from our 4th annual family vacation in Branson, Missouri. One of the highlights is renting a boat and spending a day fishing/tubing/swimming at Table Rock Lake. The other highlight is spending time at Silver Dollar City with all of the rides, shows and old-fashioned artisan shops.

One of my new favorite shops is an inspirational art gallery near mid-town. We ducked inside to explore in air-conditioned bliss until it was time to meet the rest of the family for a fruit-topped funnel cake. The Bittersweet Gallery features the work of artist Jack Dawson and his "The Seek and Find" Series. Beautiful paintings with hidden messages and symbolism.

My wall now graces a framed print of his painting "His Eye Is On the Sparrow." Why? Because of the refreshing message. Not even the sparrows are out of God's sight and care. How much more does He watch over me?

What about you? Could you spot Jesus in the painting? (Hint: Find the sparrow. Look to the right for Jesus' hand and trace it upward to find His face.) Do you sense Him watching over you?

Being Aware of the Unseen

While working in my yard this summer, I discovered again the insidious nature of the un-cared-for areas of life. All because of some raspberries and an Ash tree.

Six years ago, we planted several raspberry plants along our back fence along with a bed of strawberries, two cherry trees and a couple grapevines. (We enjoy our homemade jams and jellies!) The front yard got an Autumn Purple Ash tree, surrounded by a bed of bulbs and perennials.

Fast forward to last summer when the raspberries really started taking over. New shoots cropped up everywhere, but they were manageable. Mostly in the right spots, even if they were annoying (and prickly) when harvesting the strawberries, cherries and grapes. I meant to corral them ... but never quite got around to it.

Until this summer.

Instead of gallons of fresh strawberries in early June, we harvested one small bowl. The raspberries were choking them out and blocking the sunshine. Not only that, the cherry trees had whole sections without blossoms because they were being surrounded. Oh, and did I mention that baby raspberry plants were cropping up in the middle of the lawn?

What once was a small problem had become a major chore and took hours of work to dig up. And in the process, I discovered the cherry trees had sent up suckers last year. But they'd been hidden behind the raspberries and required a handsaw to cut them off at the ground.

Meanwhile, the bulbs in my front yard bloomed beautifully. The tree did not. I waited and waited, checking the ends of each twig for buds. Nothing. My neighbors all had leaves, but we didn't. Because of a little ash borer bug (and his friends) who'd been living inside the trunk of our tree and destroying it from the inside out. I didn't even know there was a problem until all that was left was a dry, cracked and lifeless shell of a tree.

So, because I hadn't paid attention to the trunk or known that I should spray for bugs, we got to dig up the Ash tree and all of the surrounding bulbs and plants. And then plant a new tree. And new plants. And new mulch. And I'll need to get new bulbs this fall.

The lessons I've learned? Pay attention to the little things. Take care of them early. And be aware of what's going on under the surface - where unwelcome bugs and roots spread with destructive consequences.

What about you? Are you aware of what's growing under the surface of your life? How do you take care of those areas?

The Running Father

"But when he was still a great way off, his father saw him and had compassion, and ran and fell on his neck and kissed him ... the father said to his servants, 'Bring out the best robe and put it on him, and put a ring on his hand and sandals on his feet.'" ~Luke 15:20b, 22 NKJV

Don't get me wrong. I have a great Dad. When it comes to knowing how to build and fix stuff, he's the best. Add in strong faith, wisdom, patience and a quirky sense of humor, and my Dad can't be beat.

Well, except by my Heavenly Father.

Jesus told another story to show us what God's Kingdom is like and how God welcomes His children when they head home. The father in this story waits and watches. He sees when his wayward child is still far away ... and runs to meet him. And when he gets there, this amazing father loves. Welcomes. Accepts. Elevates. Lavishes. And throws a party because his lost son has returned.

The prodigal's father was more interested in their restored relationship than restitution for the squandered inheritance. (Unlike the older brother who clung to resentment instead.)

And Jesus said this is what God is like. Ponder that for a moment. God, the Sovereign Creator, who would be fully justified in holding me accountable for all my failings and shortcomings, sees my heart. He waits and watches for me to turn home in repentance. And then He runs.

Our Father, in heaven, runs. To me. And to you.

It reminds me of a song by Benny Hester, When God Ran, (performed by Phillips, Craig & Dean) that says it better than I ever could.

What about you? Are you like the prodigal headed home or the older brother sitting in judgment? Would it be easier to repent if you saw God as the running Father?

Mixed Mail

Over the past few weeks, I've been getting some mail. Special mail in the self-addressed-stamped-envelopes I had included with query letters to various book publishers regarding two different projects.

Each time I spotted one, my heart rate accelerated and I got short of breath. After waiting for anxious months to learn whether anyone was interested in seeing more of my writing, the moment of truth had finally arrived. My fingers trembled. Should I rip open the envelope and scan the contents immediately? Or should I wait until I was actually inside my house and away from the prying eyes of my neighbors?

The first letter arrived three weeks ago. A form letter in very faint ink telling me that "being turned down, as is the case here, is not necessarily a criticism of your submission." So, why did it feel like it?

The second letter? Another form letter telling me to "look for a more suitable publisher" for my work. Ouch.

The third letter, also a form letter, was the nicest by far. They thanked me for considering them as a possible publisher before saying they were sorry they couldn't use my material.

Three letters. Three rejections. And one very grumpy, discouraged writer.

And then the fourth letter arrived. Holding the envelope didn't yield the same feelings of heady anticipation. In fact, I almost threw it away without opening it. Yet, I'd decided (for tax purposes) to save the rejection letters as proof that I'm actively seeking publication.

I sat down and opened the sealed flap. I tugged the enclosed single sheet of paper out and unfolded it. My eyes scanned the first paragraph. Thanks for your query letter about your proposed book project. We appreciate your interest.

My heart sank. This sounded like the previous letter.

Until I got to the second sentence of the second paragraph. The spot where they asked to see more of my work. My heartrate accelerated and I felt a wave of dizziness. An actual request for a proposal based on a query letter. My. First. Ever. And the emotional waterfall threatened to wash me away into an oblivion of prideful daydreams.

What happens when we get mixed messages? Do we believe the rejections and consider giving up? Or do we believe the praise and wrestle with pride? The bigger question may be whether either message truly reflects who we are at the core of our character? Which message will we believe?

I may have received mixed mail, but I'm still the same person I was before opening either kind of letter. And I have a feeling I'll be getting more of both in the future. So, I'd better to learn how to deal with the emotional aftermath now.

What about you? What kind of mail have you been reading lately?

The Loving Shepherd

"If a man has a hundred sheep, and one of them goes astray, does he not leave the ninety-nine and go to the mountains to seek the one that is straying?" ~Matthew 18:12 NKJV

Growing up in church, the story of the shepherd with the lost sheep is a familiar one. So, too, are the images of the shepherd returning to the flock carrying the lost lamb across his shoulders.

But why did Jesus tell the story in the first place? To illustrate the amazing love God has for us. You see. God is like the shepherd who seeks and saves those who are lost.

Like the not-so-bright species of sheep, we've wandered off into dangerous territory. But does our shepherd let us go, hoping we'll learn a valuable lesson? No. He pursues us. And when He finds us, does He scold and nag and punish? No. He carries us back to safety and sets us down on the correct path again.

Have I ever gotten off track in life? You bet. Have I suffered the natural consequences of being lost out in the cold and dark? Yep. And have I experienced the amazing warmth of being pursued, loved, healed, and carried home? Absolutely.

Do I sometimes forget and wander off again? Unfortunately. But I'm so thankful that God is like the shepherd in the story and keeps coming after me.

What about you? Have you ever strayed from truth and gotten lost? Have you experienced God as the loving Shepherd?

Catching Up

I've spent the last three blog-free weeks catching up.

Catching up on my sleep. On family time. On yard work. On the massive pile of ironing and mending. On sorting the mountain of outdated toys in the basement in preparation for a garage sale. On my to-be-read pile.

Somewhere, in the middle of all my catching up, my dreams caught up with me and the ideas are flowing again. By giving myself the amazing permission to do things when I felt like it (instead of being driven by my ambitious goal lists), I gained rest. And freedom. And, believe it or not, progress.

Who would have thought it was possible to get things done while resting? Certainly not me. But God's mercy is amazing and I'm learning yet again to let Him lead.

So, while I'm back, I'll be posting less frequently for the rest of the summer. Consider it a lesson learned. (Not to mention the family vacation later this month!)

What about you? What have you been catching up on?