Tuesday, February 24, 2009

CEC speech clinic update

My first impression of WKU's speech clinic has turned out to be wrong! The therapy is handled by a senior student with a faculty member supervising. The first day we went, the supervisor was out for surgery and the student seemed pretty unsure of how to work with Lewis. He is not the easiest child to figure out, even with us providing a lot of info ahead of time. He was uncooperative, and she had little success staying in control of things.

The next week, the supervisor was back! Things have been going better, but there had been little work done on actually making sounds.....which is what is what you would expect "speech therapy" to focus on. Today the supervisor asked me in the observation room if Lewis ever sang songs or said the words of songs, to which I replied, "Oh, no! He doesn't say any words." Immediately, she ran into the room and began coaxing signs and sounds out of Lewis. I have to say, I was impressed. She quickly figured out how to play a simple game of stealing his cup and getting him to request it back with the sign for drink and a sound that was much like "mo" for "more."

The best part came at the end when the therapist, a student observer, and the supervisor were all singing "Itsby Bitsy Spider" with Lewis. He just started doing the motions with our DI the other day and I was hoping he would participate with the group. He watched them for a couple rounds and the supervisor held his hands and helped him do some motions, but then he started doing them on his own with the biggest smile and you would've thought they'd bought him a Mercedes, he was so happy.

He participated with so many of the tasks today, and did really well sorting fake fruit and finding animals on a board. The tasks are similar to things we are doing in his ABA program, but the directions he followed were much wordier and not what he is used to at all. It was just nice to see that he could adapt to that new environment and still use the skills he's learning in ABA. That is our goal, for sure!

There have been many heartwarming and encouraging moments the last few days which show us that we are getting somewhere. I'll try to share more when the schedule lets up!

Sunday, February 22, 2009

funny boys

These are some leftover pictures from last week. The boys have matching jammies (thanks to my stepsister, Leah) and I had to get a picture. In this picture, Lewis is looking at his animal book and trying to say, "Meow." He pretty much just says, "MmmEEE," but it's a start!


There was some warm weather last weekend and we got to go to the park. Lewis has gotten much more interested in playing at the park, which is a nice change from just beating on the equipment and running up and down the ramps. He has been crawling under everything lately.....chairs, tables, through our legs, so these tunnels are a wonderful alternative!



There are a couple of slides he really likes going down now too. The tunnel slides are a bit more challenging because they do not sit even with the landing above. Lewis worked for a half hour one day figuring out how to get his legs inside so he could go down by himself. Now he's a pro!


One of those other motherly things I did last weekend was to dress the boys in red for Valentine's Day. Lewis was excited at first when I got out the camera,......



but when he realized he was not going to get to play with it, he responded this way:



He recovered soon after and hopes that everyone had a great Valentine's Day!

Wednesday, February 18, 2009

musical Lewis

Last spring we went to a birthday party and Lewis got a castanet as a party favor. Well, he got 2 actually. Anyway, he loves clicking them these days, especially on car rides, so at some point I made up a little song called "castanet" that really has nothing to do with these cute little percussion do-dads. Recently we started adding signs to the song, and the other night discovered that there is a sign for "Lewis" which absolutely cracked me up. Look for it in this video.



His other favorite song right now is "The Wheels on the Bus" and he has lots of motions to go with that too. You could say he's into music. And maybe he feels more creative just after bath time because the other night he bypassed his p.j.'s and went straight to the piano. Check him out!

Sunday, February 15, 2009

boys' baptism: a theological moment

We have been wanting to set our boys apart to the Lord for some time. Last weekend we took the step of having both of them baptized together at our church, Grace and Peace Presbyterian Church. The PCA practices infant baptism, which is not something that Justin or I knew much about beforehand. But after studying up on it, we felt very comfortable sealing our boys in this way, and trusting God to reveal Himself to them in his due time. Oddly enough, when I was a baby my parents were attending a Presbyterian church and so I was also baptized in this way.

Much of the argument in favor of infant baptism comes from the examples in the New Testament where an entire household was baptized when the head of the family comes to faith in Christ. Here's an excerpt from one of the articles that was really helpful.

"Baptism is also not merely an outward sign of an inward change....Baptism is a sign and seal of the covenant, and thus it signifies what God does, not what we've done. We are baptized, we don't do anything in the act of baptism. Baptism signifies that, from our perspective, the person is a recipient of the covenant relationship with God, either because the person has professed faith in Christ or one or both parents have professed faith. Of course the profession of faith may not be genuine, and in the case of an infant he or she may prove to be an apostate, but we baptize in the judgment of charity, not because we can make infallible judgments about one's spiritual state. While we believe that professed Christians should be baptized, we believe that God's covenant has always been made with families and not just with individuals. In our extremely individualistic culture, this is a difficult concept for many people to grasp." --Kevin Twit
We realize this is not the typical or even popular view of baptism today, so feel free to talk with us more about this later if you'd like! We want Lewis and Owen both to take part in the blessings of God's grace now, before they know the Lord, and for those experiences to lead them each into true relationship with Him down the road when they are old enough to grasp spiritual things. We hope they cling to Him as children with childlike faith, but we know that he is the one who really does the clinging, and we are so grateful for that!

And the pictures (our pastor, Brian Howard, baptized the boys!):

Tuesday, February 10, 2009

the diet and other stuff

This past week or so has been busy, but we've managed to get some things done. Our ABA program is progressing nicely. Lewis has gotten very used to the routine of it, and he mastering his tasks step by step. He's able to work 4 and 5 piece puzzles (with non-peg, connecting pieces) and he's imitating some basic nonverbal movements like "arms up" and "rub hands" so we are encouraged.

We also went to the DAN! doctor last week. He took some notes about Lewis and then encouraged us to try the gluten free, casein free diet (also known as GFCF). He said that 65% of kids with autism respond well to the diet, and because it's not invasive, it is a good place to start. After trying it for 3 months or so, we can try adding back in some dairy and eventually wheat to see if it makes a difference. Many kids have leaps in speech though, so we figured we have to give it a try. The diet eliminates all milk, wheat, oats, barley etc. which is tough, but not impossible. Thankfully, Lewis can still eat beans which are by far his favorite food. We are also supposed to avoid soy.

Here's what Lewis ate yesterday:

Breakfast: GFCF cereal bar and rice milk.
Snack: Juice with liquid vitamin added.
Lunch: Gorilla Munch cereal (dry), potato sticks, pureed fruit (apples & bananas) with a GFCF cookie and marshmallows for dessert.
Dinner: Veggie crisps (Trader joe's version of veggie chips), GFCF pretzels, a good size helping of black beans(which he mostly ate himself with a spork!), and marshmallows for dessert. Rice milk.

Other things he can eat (all different brands much be checked to be sure): french fries, corn chips, rice cakes, any fruits or veggies, a version of Cheerios called PerkyO's and I'm working on a recipe for chicken nuggets. Besides crackers and cookies it's relatively easy, although somewhat expensive! We'll have to train him to eat more potatoes.

Personally, I'm loving the gluten free granola I bought at Whole Foods. It's outrageously expensive, but since Lewis won't eat it I have really enjoyed helping myself. Yum!

We were delighted to get Owen into the sib study with Vanderbilt! He and Lewis will be seen around their birthdays this summer, and then Owen will go back every 3 months or so for progress checks. Full diagnostic evals will be done at 24 and 36 months. The best part is they pay us to participate--not much--but still, it's something!

Our First Steps record review came back and our units doubled. We were hoping for more, but we now have 3 therapists per week for an hour each. I'm really thrilled to have our OT start coming. Our First Steps 'team' seems very solid now, which we're so grateful for.

We have our HCB waiver assessment tomorrow afternoon--another big answer to prayer. Hopefully that will go well.

The other thing I wrote about was the CDC at WKU. We had our first appointment today and it was not impressive! We'll give it a little more time to see how it goes, but it was just short of a waste of time. I did run into another mom of a child with autism that I've been getting to know via Facebook so that made it worth the trip!

So this got really long. But thanks for your prayers. We have really made some headway and will keep you posted. We crammed some other things in this week too, and we'll save that for another post!