Monday, December 8, 2014

A is for...

Baby Bee is obsessed with the alphabet right now. Well, certain letters of the alphabet that is. He loves to find the letter “B” on book titles or packages, and searches diligently for the letter “P” on buses and billboards. He points out the “W”s in whatever media I’m reading and jumps in to the alphabet song when we get to “O.” Hearing him attempt to say “alphabet” is pretty cute too.

Our family recently received a personal helping of Alphabet Soup. Baby Bee has formally received a diagnosis: ASD, or Autism Spectrum Disorder. We’d been operating under the informal SPD label (Sensory Processing Disorder) and figured there was more to the story. The letters themselves came as no surprise: ASD level 2, with some unofficial words about “highly gifted” and “cognitive abilities of a four year old in some areas” thrown in. 

In our family, A is now for Autism.

We were in disbelief at first. Did we really, finally get someone to tell us what was going on with Baby Bee? The trend, in working with families in the early years of life, is to say, “Come back later. In several years. Let’s wait and see how things turn out. He might catch up. It’s too hard to sort out right now.” So we were amazed that someone said, “Hey, your kid really does fit the profile. Here’s some letters for him!”

Then the disbelief turned to joy--help is on the way! We qualify for therapies specifically designed for kids with ASD, like ABA (applied behavioral analysis) therapy. Can’t wait to get started!

Now we are in a funny place. We are fighting the insurance company for the help that’s supposed to be here already and wondering if we will ever get a good night’s sleep—or a nap during the day for that matter.  Plus 3 to 6 months of sitting on service waiting lists seems like a long time when your kid isn't even two. We are exhausted after all this advocating and realizing that we will probably have to continue to advocate for everything in the future. We weren't scared to get a diagnosis, but deep down, a little piece of me thought having a definitive name to describe our lives, meant things would somehow get easier in their own right.

I think this is the part of the post where I am expected to tie things up. Loop us back around from A to Z, and say something clever about Baby Bee being so exceptionally smart and how lucky we are as parents. Or about how we wouldn't change a thing about him even if we could. Instead, I’ll let you share in our present discomfort, and you can know that this is where we truly are right now. Grateful, tired, grieving, hopeful...did I mention tired?

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As far as the homestead, my energies have focused more on Baby Bee while Mr. Bee’s been doing most of the animal work. My role is primarily limited to getting a teenager goat’s head unstuck from the same gate *every single day.* No small task, I assure you. We’ll post more about those happenings soon, I hope. 

2 comments:

  1. We did ABA for my child too, over a decade ago before insurance companies would pay. We found that licensing and credentials had much, much less to do with our son's success than a loving, caring, organized therapist. Our Certified ABA consultant tied my son's legs together and pushed him off the bottom step to get him to learn to "jump". When trying to teach him yes from no, she shoved an olive in his mouth when he answered "yes" to "do you want an olive?" which then made him scream no no no at the top of his lungs any time you asked him "do you want..", whether it was chocolate or ice cream or whatever. It was a college student who came up with a new program to teach him yes from no, and after 2 months, we undid the damage that horrible certified, highly recommended, expensive consultant did. That college student ran our program for 2 years at a fraction of the cost, but she was AMAZING and my son benefited so so much. Don't be seduced by credentials. Trust your mama instinct.

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  2. I'm sorry to hear your initial ABA experience was so horrible. I can't imagine what that must have been like. For all of you.

    We've found an amazing match. It's not traditional ABA but I couldn't have asked for a better therapist.

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