Tuesday, October 6, 2009

Starting Point

Before I go to the beginning, I will start with now. Now is scary if I don’t choose to believe the truth. By truth I mean the ultimate truth, not the truth seen in the world around me, what doctors tell me, what my feelings tell me, but what God says about me, my family, love, and even suffering.

They tell me my little boy has autism. Or at least, a “working diagnosis” of autism. The “working diagnosis” part comes because he didn’t have a full-blown evaluation, because he’s only 22 months old, and they want to see how he progresses after a year of therapy. But in the books, it’s autism.

This happened 10 days ago. If not for my faith, my family, and my friends, I’d probably spend much time crumpled on the floor, trying to fix the hole in my heart, howling from the sheer pain of it, crying tears that offer no solace. Thank God I am not alone. I have done some of those things, because I am human, but I am not alone and I am not without hope.

If I go online I am bombarded with everyone pontificating about what works and doesn’t and why you must choose THIS way or THIS diet because look! My child was cured! And of course my heart aches to find just the right cure because I don’t want to deal with this, I want to just push this away under a rug, just make it dissipate, like smoke. But there is no way to find the right method for my child without some trial and error, and there is no way to know how much it will help until we try.

This is where faith comes in. Faith, which has never been my strong point. One of my favorite verses is in Mark when Jesus says, “Don’t be afraid. Just believe.” I think just choosing that as a favorite verse is an act of faith, because I am far from embracing the awesome simplicity. Don’t fear. Just believe and trust God that everything will be okay. Isn’t that what life really boils down to?

And so we are going to start some therapies and one of the main ones will be “Floortime.” Floortime is what they call a more “naturalistic approach,” which scares me a bit. When I think of naturalistic I envision, for some reason, the people diagnosed with cancer who go for alternative, holistic therapies rather than pumping their bodies full of chemotherapy drugs. To me, the chemo of autism is ABA therapy -- applied behavioral analysis. I call it chemo because it's the strictest, most intensive of the therapies, with the most research backing up the results. I’d love to explain ABA but still can’t quite figure out what it is, other than it having something to do with cause and effect, breaking every desired action into tiny steps, and reinforcing behavior. All I can think of is Pavlov’s dog.

I like the philosophy of Floortime because basically you’re approaching children at their level, especially to start. You are helping them to want to react and engage with you rather than teaching them rote actions. I see it almost like our relationship with God. How much does He treasures our spending time with Him not as a habit or forced obligation but because we genuinely love Him and want to? Not only that, but I can almost compare it to God's relationship to us. He meets us where we're at. He loves us even before we change and become all we can be or should be; before we reach our potential.

In Floortime, you join in with what the child is doing to draw him out. You encourage the child to “open and close circles of communication,” which is the back and forth that comes from regular interaction with others: facial expressions, gesturing, eventually exchanging words and ideas. The Floortime idea is part of a larger model for treating autism spectrum disorders (ASD) developed by Dr. Stanley Greenspan. While there is a wide range on this spectrum, Greenspan's (and much other) research has found that all children with ASD to some extent have trouble with eye contact, imitating gestures, and joint attention (using eye contact and gestures to show and direct the people around you). The premise of Floortime is that very early on, something in the child’s biological makeup caused these interactions to become unpleasant for the child – I believe a lot of it has to do with the child’s sensory intake, how they are perceiving the world around them – and they begin to withdraw because it doesn’t bring the same pleasure as it would to another child. Maybe noises are too loud, lights are too bright. Wires are being crossed at different places in the brain. I am hoping and praying that as we start with Ethan young, we can do some rewiring and help him along.

I know Ethan has potential. Every mother says this, and you know what? It’s true. Even if your child is in a wheelchair, needing constant care, they have potential to change a life. As my mom said recently, they have the potential to bring out God’s unconditional love in all of us. And what greater gift could you receive? But what’s painful is the rest of the world not seeing that potential. We live in a drab physical reality where people stress out if their child gets a B or doesn’t get to play on the soccer team. People, including Christians, aren’t often living in a spiritual state of mind.

So he has the potential that every child has, but I also mean I KNOW he has the potential to learn. And I want so desperately to harness that. I will give an example:
I’ve started to read the Floortime “Bible” to find out ways to start the play therapy with Ethan now. Much of the therapy is family-centered and meant to be practiced anytime, anywhere. So it’s crucial for family to be on board, especially since we learn better when we make emotional connections, and Ethan’s connections, as stunted as they might be, are obviously much greater with his caregivers and sister. In the book they gave some advice about using whatever the child’s interested in to get them to engage, and also to use the imagination (which is another rough area for kids on the autism spectrum).

SO, I decided to use cheerios and Elmo, both of which Ethan loves. I thought I’d show him about fast and slow and up and down using the cheerios on his tray while he was eating. So I started moving them very fast, then very slow across his try, and up and down, saying the words while I did it. He began laughing and looking at me, wanting to do it again. That was yesterday. Today he started picking up the cheerios, or even raisins, and doing the same actions himself, without me reminding him. He remembered, and he was imitating and action he had learned. I was grinning from ear to ear.

As for Elmo, Ethan has an annoying talking Elmo, but I encourage play with it because it’s a toy he’ll bring to me to make it go. We’ll have some back and forth interactions around irritating Elmo. Yesterday I decided to turn Elmo off for awhile so we could play pretend with him. We pushed him around in a toy shopping cart, gave him pretend food, tucked him in for a nap, etc. I offered Elmo a drink, and a few minutes later, Ethan did the same. Today we took out Elmo again and I began asking him if he wanted food. Ethan offered Elmo his cheese and drink, without me modeling first. This was the first time Ethan had accomplished the “Can pretend to feed a doll” milestone listed in those “What to Expect” books. BUT, this was the best part: Ethan had grapes, and I asked if he wanted to give Elmo a grape. So he did, and then I asked if he would give mommy a grape. I opened my mouth for him and he put it in.

Sheer joy! You see, Ethan is 22 months old but has never given me food when I ask. You know that cute sharing kids do when they’re eating goldfish and mom asks, “Can I have one?” and they take their pudgy little fingers and put one in your hand and mouth? Ethan wouldn’t do that, but he made a new connection, carrying it over from the previous day and from Elmo to mom, and I was so proud. These are the types of examples I hope to see more of from Floortime. They keep me motivated and focused, and I am praying for more of them.

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