Saturday, April 18, 2015

Autism Aware- Our Journey to Treatment

My son Cullen was diagnosed with autism in July 2013, and getting to that point was nothing short of a trying journey.  Figuring out what to do next seems to be a continuation of that journey.

My son was receiving speech therapy during the time we were waiting to be evaluated by the specialist.  He received half an hour with a speech therapist and one hour with a teacher every week.  It wasn't nearly enough, and it wasn't a simple speech delay with which my son was dealing.  Please don't misunderstand me, Gail and Michelle were phenomenal and I will be forever grateful for the role they played in our lives.  But I now know that Cullen needs intensive Applied Behavior Analysis (ABA) therapy, and we'll get back to that, but first, wrap-around.  

Unfortunately, the status quo in our area seems to be "wrap-around" services.  I'm going to be upfront about our experience with wrap-around and tell you it was not good, and I'm very bitter about the whole thing.  First of all, Cullen had to be evaluated by the agency's psychologist.  Keep in mind that he had already been evaluated and diagnosed by a specialist who in his report indicated Cullen would benefit from ABA-based therapy.  But we went through with the evaluation.  Then, after the evaluation, we learned that because of Cullen's insurance, we would have to use a different agency.  Cullen then had to be evaluated again by the different agency's psychologist.  So three evaluations all in support of ABA-based therapy.  It seemed like a tremendous waste of time and resources to have two more evaluations.

I'll spare you the drama that came with the TSS (therapeutic staff support), the BSC (behavioral specialist consultant), and the agency in general.  But long story short, our TSS was only reactive to negative behaviors, and was never, ever proactive in developing positive behaviors.  Cullen doesn't display negative behaviors often (ie hitting, elopement, self-injury, etc), so we wasted a lot of time and resources on a completely ineffective agency and overall got the feeling that they could not possibly care any less about Cullen's success.

So the lesson here is to always question the status quo.  I had done my own research.  I knew ABA therapy existed as a separate entity and suspected that it may be more beneficial than "wrap-around," but I just went with the flow.  Question the status quo.  But sometimes that is hard when you don't know what you don't know.

This all took a lot of time, but I'm happy to announce that we ended our services through the wrap-around agency and began actual ABA therapy with Verbal Beginnings in November 2014.  Our BCBA (Board Certified Behavior Analyst) has been an angel and just what this family needed.  Since November, our BCBA among many other things has been in Cullen's classroom, has taken us on field trips to the dreaded public restroom and barber shop, and has included me, Aaron, and Maggie through it all.  It feels as if we're all learning a little bit more about how Cullen sees the world and how to speak his language.  I wish we had started ABA therapy from the very beginning!

Haircut Time!
A little about the above picture collage- Cullen used to get his hair cut at a stylist's salon.  He did okay at first, but he started to resist.  As he got bigger and stronger we grew worried about him getting hurt.  So we bought clippers to do his haircuts at home.  Aaron would hold Cullen on his lap and I would clip his hair as quickly as I possibly could, Cullen trying to get away the entire time.  As you can guess, haircuts didn't happen all that often!  We worked on haircuts at home with our BCBA, practicing and using copious amounts of positive reinforcement until we felt it was time to put our work into real life practice.  We spent two hours at the barber shop, but there were no tears or meltdowns and even though he didn't get a perfect haircut, I feel certain when we try again in a couple weeks that it will go even better.  

So for now this is where we are and the family seems happy.  I know we won't get to keep our therapist forever, so I'll have to be on the look out for what's next very soon!

Disclaimer- This post is based upon my own experiences and opinions.  I'd like to think that somewhere a family is receiving great services from a TSS and BSC.  I'd just urge you to pay close attention and remember to question that status quo.

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