Friday, February 06, 2009

What to Do When You Don't Have $20,000 for a Week of Therapy?

Figuring out how to guide children with autism in their thinking is never easy. The Bilson family found their daughter had developed the habit of tantrums whenever she did not get her way. Figuring out how to set limits to avoid letting an autistic child dominate a family is not easy. Watching the "before" video of their daughter Marissa reminded me of how Helen Keller controlled her family before Annie Sullivan arrived on the scene. What I find most fascinating about this video is how closely Marissa pays attention to how people react to her screaming to see if they are ready to cave to her whims. I wonder if Pamela never developed that habit because she was not as adept at referencing our reactions.

The Bilson family received five days of counseling, worth $20,000, from an ABA therapist. Because CNN filmed and aired this story, the service provider of the therapy waived the fees. So, what do the rest of us do?

In our case, we are finding that RDI helps us with Pamela's toughest issue, anxiety, a big problem for many people with autism. Dr. Temple Grandin, a well-respected expert on autism (who also happens to have autism), said that in her late twenties, "Anxiety and panic attacks got worse and worse. It was like a constant state of stage fright." Low-dose antidepressants have kept her anxiety at bay ever since. However, she recommends other alternatives like weighted blankets and other sensory integration equipment for younger children. When Pamela was young, we found sensory integration techniques critical in helping keep her from melting down.

Our approach is to teach Pamela to reference us when she is anxious, which I have chronicled all last month. Everyone in the family, including her brother David, is learning how to remain calm and neutral because it helps Pamela calm down. Rather than giving Pamela treats for becoming regulated, we focus on guiding her thinking about how people are feeling. If we are not panicking, then there is no reason for her to panic. Moods can be highly contagious, and we have noticed a pattern. If one of us wakes up on the wrong side of the bed, Pamela catches that mood and becomes out-of-sorts. If one of us gets upset because something is not going our way, Pamela becomes more susceptible to screaming when something does not go her way. We are all becoming more mindful of how we pass around moods like cold germs. To recap our efforts, I started off explaining resiliency in a messy world, handling Pamela's trigger words, whacking one uncertainty at a time, and practicing what if scenarios.

We are starting to see progress on the uncertainty front. For example, with trigger words, last week, I still had to warn her in advance that I was going to say the upsetting words. Here is an example of how she reacted when I forgot! My bad!

This week I noticed I no longer needed to give her warnings about saying trigger words. Pamela is starting to stay calm when she sees I am calm. In fact, she acts downright playful here!

However, I still have to limit the number of trigger words and treat lightly around topics that create major anxieties for Pamela (such as the radio station going silent for thirty minutes). Here I go from selling the dogs to being sick to the broken radio.

Earlier in the month, Pamela had started to get anxious whenever Steve ran before work because sometimes he left the house later than usual. She was even more bothered when he worked from home (which he does from time to time). While she has not conquered this new anxiety, she is improving.

Yesterday morning, Steve caught Pamela completely surprised. He left early (like 6:15 AM) to go to an early morning Rotary Meeting (a new gig of his). It was held about 20 minutes from home. Steve decided to return home and switch to the car that consumes less gas since the office is another hour from the location of the meeting. He did not warn either Pamela or I in advance. The worst thing you can do is surprise her like that! As soon as I saw him in the driveway, I got the camera ready and, when he came him, I let him know I would film. Pamela was startled but Steve handled it very well. He reassured her about his intentions to go to work and plans to switch cars first.

We still have a long way to go in whacking the anxiety moles, but now the entire family has a game plan and we are mindful of how we can help Pamela overcome her anxieties and how our negative moods influence her mood. Even better, it doesn't cost us $20,000!


Anonymous said...

Wouldn't $20,000 for a week of therapy be great?

I'm glad to see Pamela's continuing progress. Great work!

We've been doing a lot of the same things to help our son with anxiety issues. I'm finding a big difference lately as I've been doing what your husband did in that last video clip (he calmly and repeatedly explained to Pamela what he was up to). I'm finding that my son seems to take a LONG time to process the input but, when we are patient and remain calm and answer his many repeated questions, it has improved things a LOT.

Thanks for your blog - I'm learning a lot from it!

Horizons said...

Thanks for writing about this, Tammy. You provided some excellent information and examples for parents to think about in regards to these kinds of issues. Maybe you saved some people some money :)

Anonymous said...

$20,000 for 5 days of ABA?!?!?

I am getting so much out of watching your videos -- especially seeing how you use your voice and body language to soothe Pamela. She really is making tremendous progress with referencing you and letting you redirect or comfort her!

walking said...

Actually, Susan, I would like the $20,000 and I bet I could squeeze out three YEARS of therapy with that! LOL!

Susan and Mama, Pamela is making progress, especially now that everyone is mindful on how to avoid spreading bad, grumpy, snotty moods!

Nicole, it sure gives me perspective on the value of RDI when you line up the cost. Granted, most people do not pay that much for ABA in a week, but I know some that pay more than that for ABA in a year! I think RDI gets more bang for the buck and is more mindful of underlying issues such as uncertainty being at the heart of some of our kids' anxieties.