NO ABA FOR YOU!

The best seat in the house...........


This is our last blog entry before turning things back over to the girls. I cannot tell you how excited they are to get us off of here! They've been whispering back and forth all afternoon, tossing around ideas for a new password that's "hack-proof". They're not about to let us get on here again. It was fun while it lasted!

So, this week was a biggie. We started the week with a visit from Nana Cummings and Omi Paul. It was great! Saf took a little while to warm up but once she did she was all about showing off. She showed them how she throws the ball for her dog, how wonderfully her and her sister can play, and how very much she enjoyed their company. When Nana and Omi left for lunch Saf fell apart. She was so sad that they were leaving. As much as Saf can seem aloof and troubled by other's presence, nothing could be farther from the truth. See, Saf LOVES to be around people. She just doesn't know how to initiate interaction, giving her the appearance of being indifferent. In reality, she is nervous and unsure. Once she finds a "schtick" that gets a good reaction she feels much more relaxed. Nixi wasn't sure what to make of the whole visit, but she sure did like staring at Nana and Omi. What intersting broads! All in all, a great visit!

Saf had a wonderful day at school on Wed...but refused to go on Friday. For some reason she isn't game for putting on shoes...whether its the shoes or the promise that shoes means were're going out, I don't know. She had some banner communication moments this weekend, commenting on things like, "mmmm, banana is good", "donut is good". Seems small, but truly HUGE milestone! We were dropped like a hot potato by the ABA vendor that we had been with for the past year. Seems they wouldn't budge on the 30-hour a week intensive program idea. So, we're off to look for another vendor that will provide what's appropriate...consult services. Theoretically, Regional Center is taking care of that for us. Sadly, in a conversation with them on Tues. it was made clear that they just don't get "us". They are under the impression that we are anti-ABA. Weird, given the amount of fight we've been putting forth to keep our ABA services...just at an appropriate level.
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SCARY ABA SIDENOTE ~ ABA is currently the treatment of choice for Autistic Spectrum Disorders (ASD). Because of this, many counties and Regional Centers across the country as well as most insurance carriers are only offering ABA for ASD kids. The most inclusive review of the current research on ABA effectiveness states that ABA has an efficacy (success) rate of approximately 46%, with the most progress being attained in the first year of treatment. Every year thereafter gains have proven to be minimal. The few long term studies that exist infer that the gains made in childhood don't stay with the kids as they mature into adulthood and live in a setting other than the setting in which ABA was initially practiced. Scarier, the Denver model for Early Intervetion (what they were doing with Saf), has a success rate of 34% based on a study of less than 10 kids. So, seems like a bit of quakery you might say? Sadly, no, tragically...these are the best success rates to date for treatment of ASD's. There are a number of treatments and treatment philosophies out there, just not the money for research to scientifically prove them one way or the other. ABA costs roughly $20,000 - $40,000 a year...per kid. At the end of the day, there's a good amount of money in the ABA community to put back into the pot for things like research studies. Again, those studies have concluded that about 1 in 2 kids above the age of 3 involved in an ABA program will show notable progress....and little over 1/3rd of a child under the age of 3 will benefit from the hot new Denver model. OUCH! That smarts a bit!
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Back to Saf. We're NOT anti-ABA...but we sure as hell aren't gonna put all our eggs in a basket so loosely weaved! Saf is one of the 54% of kids that cannot tolerate an intensive ABA program....and THAT'S OK! Its not her fault, its not our fault, it just IS! So, we'll see if we get the new consult service and will pursue other avenues for different types of treatment in the near future!

Nixi had a patchy week.....full of highs and lows. A big low, getting 2 shots at her doctors appointment. Ginormous high, saying "moh" to request more food and more swinging! What a great kiddo! Truly a fragile soul, our little Nixi. She remains a bit of mystery to us at times. While she can be truly joyful, it just seems so fleeting. We just love her so much and want her to know that we're here for her always. I think she knows this on a cellular level, her anxious little brain just seems to get in the way! Really, a gentle and delicate kid.

Well all, its been super fun but its about time to turn the reigns back over to the girls. Take care and thanx for listening!

Sarah

Nixi's new fav way to swing.......