Sunday, November 30, 2008

official diagnosis

If you haven't heard the word yet, we finally got in to have Lewis' big evaluation at the Weisskopf Center in Louisville a few weeks ago. He was seen by four specialists (including a developmental pediatrician and a psychologist) and was diagnosed with autism. We were not surprised, but still somewhat disappointed and have been processing the whole experience which is why we have waited to post anything about it until now.

A couple of months ago, I began reading quite a few books about speech delays and autism and it seemed very obvious that all of Lewis' symptoms, habits etc. fit those related to autism. It was kind of a relief to finally have an explanation for it all. Lewis' love of spinning objects, selective eating, and difficulty in imitation all are common in autistic children......and I could list a couple dozen more odd behaviors that all fit.

Still, it has been a struggle to consider Lewis' future, and our future together as a family and why God would allow this kind of situation in our lives. After quite a few tears and some pretty angry prayers, we have come to accept it and to trust God to accomplish his purpose in it for all of us. We even have hope that Lewis may learn and achieve somewhat normal function in his life.

About six years ago, I was visiting my sister in Evanston, Ill. when some friends of hers announced at church that their son had been diagnosed with autism. He was two years old at the time, probably about the same age Lewis is now. In tears they asked for the support of the church, specifically through an intensive kind of therapy called ABA (Applied Behavior Analysis). A group of volunteers were trained to do the therapy 20-30 hours per week in their home, and my sister Beth was one of them.

They worked with this child for months and months, and eventually he lost almost all the signs of autism. I've seen him since and talked with him and could tell no difference between him and a normally developing child. Seeing first hand the difference ABA can make in a really young child with autism has helped me to face this head on. I know that great gains are possible. Approximately 50% of autistic kids who start ABA under age 3 eventually become high functioning or indistinguishable from their peers. We have begun pursuing this type of therapy for Lewis.

Unfortunately, it is not common in Kentucky and especially not in Bowling Green. Still, we are hoping to get a home program set up very soon. Basically, this type of therapy is designed to teach skills in small steps to make things easier to learn. Because autistic kids do not imitate actions or speech automatically like normal kids, imitation is taught through rewards (also called reinforcers). As they imitate and are rewarded, they typically become willing to try different and harder tasks, and many even learn to speak this way. Initially, children are forced to imitate simple actions by moving their hands (also called hand over hand) having them go through the motions themselves, until they are able to do it themselves.

Here's an example of something we have taught Lewis recently: Last Christmas Lewis got a book called Dog. This book has pictures of different kinds of dogs with textured things to feel like furry ears, and also pull tabs that make certain dog parts move (a scratching leg, a wagging tail etc.). While reading this book to a group of kids last spring, one child saw me pulling the tabs and immediately began to imitate my actions. That is a normal response. For Lewis, he saw this book read hundreds of times over the months, but would always try to move the animals not by pulling the tabs, but by moving the dog parts themselves. Finally the other day I took his hand and pulled the tabs while reading the book over and over. He didn't begin imitating me in that sitting. The next morning, the book was still laying on the coffee table. When Lewis got up and found the book, he started pulling the tabs all by himself and was so proud that he could do it. It was like he needed time to process this new skill.

Since then we've taught him to use some of his other toys this way too. He definitely has the capacity to learn, we just have to teach him in a way that makes sense to him and allows him to succeed in smaller steps than other children.

This has gotten really long, and I apologize! But we want to make it clear that we feel so blessed to have Lewis in our lives. We love him just the way he is and would not trade him for the world. On the flip side, we are expecting the next few years to be particularly challenging in trying to free him from the autistic behaviors that sidetrack him and keep him from learning. In that aspect we will need the prayers and support of as many as are willing. If you are interested in learning more about autism and ABA here a few books we recommend:

  • Let Me Hear Your Voice by Catherine Maurice
  • Facing Autism by Lynn Hamilton
  • Louder Than Words by Jenny McCarthy (this one has quite a bit of profanity, just to warn you! Her perspective and feelings are some I relate to very much as a mom so I will still recommend it.)
Feel free to ask us questions or talk to us about it. We are still learning ourselves, and we are finding that many professionals even are not familiar enough with the various aspects of this disorder that is affecting 1 in 150 kids in America today.

Tuesday, November 25, 2008

recent photos

Here are some highlights from the recent past. Grandpa Shepherd came to visit and took on both boys at once:


Aunt Monica stopped by too, and snuggled with Owen.


Lewis got some kind of stomach bug and was lounging pitifully on the couch. (We wondered why he wasn't hungry!)

Lewis tests out the strength of the red balloon.


Owen makes his first attempt at sitting up! He's already 5 months old after all.


Owen and Lewis play on the couch together.



Friday, November 14, 2008

five years and four shepherds

Last weekend, Justin and I celebrated our fifth anniversary. We took the opportunity to shop and try and boost our sad economy. We went to the Gap Clearance Center in Hebron, Ky. and onto the new IKEA in Cincinnati. My dad and Martha were kind enough to look after the boys! We got a little Christmas shopping done and got some other things for ourselves......including these slippers for Lewis for $1.

Lewis has been consistently taking off his socks lately, and since it is getting cold, we are delighted that he is willing to wear these slippers. He tends to connect wearing regular shoes with going outside, so this has been a nice alternative to keep his feet warm (and they are easier on the furniture). You can't beat the price.

When we went to pick up the boys, we were able to get a picture of all four of us. This is the first family picture since Owen was born! Note the matching vests given by my sister, Ellen.


Thursday, November 06, 2008

trunk or treat and beyond

Backtracking to last week, we took the boys trunk or treating on Halloween. A church downtown advertised the event, and there were 10 whole cars there with candy which would have probably disappointed most kids. For us, it was the perfect amount. Lewis was a lion. Though it took a while to get used to wearing his costume, once we were outside he forgot about it and even roared for some of the people who gave us candy. He went from car to car signing "please candy" and ended up with a nice stash.


Owen, on the other hand, was dressed in Lewis' old tuxedo costume. We called him the 'lion tamer' but he mostly just rode around in the stroller. He seemed happy with everything like usual.


Since then, the boys have been under the weather. We finally took them to the doctor today and discovered that Lewis has an ear infection in one ear, and Owen is congested with a cough which thankfully means he can avoid antibiotics for now. He may be sleeping in the car seat for the next few nights though at the suggestion of the doctor!

They've both been in pretty good spirits despite their coughing and sneezing. Owen is loving spending some time in our jumper thing. He doesn't really jump, but he does wander around and just loves being in the upright position. Here's picture with Lewis and daddy.


Here's a video:

Monday, November 03, 2008

A tale of two swing voters

Hey everyone, this is Justin, checking in on my regular every-few-months basis.

Well, this morning I woke after a long day of reporting on the Titans' overtime win over the Packers (yes, really, it's work)... and what did I find?

First, a little background. I often tune into MSNBC ("The Place for Politics!") in my spare time here at home, and my little guys are more politically informed than most toddlers and infants. Well, anyone that's met Owen and Lewis knows they're a couple loyal kids. What you may NOT know is how patriotic they are! Apparently, they'd caught a few John McCain ads in the past few weeks, and decided "Yeah! Country first!" And that's how I came to wake up to this:

Shepherd boys wearing McCain shirts?!?! Grandpa Billy would have a fit! But, Shelley and I are moderates and try to teach our boys to think for themselves. At least they're civic-minded, right?

Well, I stepped out for a bit and thought little else of it. But when I got back, it seems they'd figured out that their dad wasn't Joe the Plumber, but Justin the meager coffeeshop owner -- and that if daddy gets a tax cut, daddy's boys might get more toys! That's when I saw this:

Grandpa Billy would be proud now! (Grandpa Norm, not so much.) I think they're still conflicted -- thankfully for democracy's sake, they're not allowed to vote yet... (Cheesy moral of the story coming up... wait for it...)

But YOU ARE! So head out to the polls on Tuesday and exercise your rights!

This has been a public service announcement by the Fantastic Family Shepherd. No candidate or candidate's committee was involved in this announcement. And no one approved this message.