Friday, April 29, 2011

Autism Awareness - Tara's Part 2

You'll remember that I had promised a 2 part guest spot for Tara. I am pleased to wrap up Autism Awareness month with her!!

Part 2

'What Did It Mean?
The Autism diagnosis changed everything and nothing. We went to see all the same therapists and behaviorists, it was another piece to the puzzle that is Alex. It was simply a new filter in which to view some of his behaviors.

The biggest decision that came with the diagnosis was to medicate or not. The drug the team felt would work best for Alex was Risperidone (trade: Risperdal). I have worked in the drug discovery field for most of my adult life and while I believe that medication can absolutely be a life-changer in many situations, I’m also very aware of adverse effects that can occur as well. While this drug had been around for decades, there was very little info about the usage in pediatrics and the long term side effects that may occur with long term use in a patient population so young. I agonized over the decision; and eventually decided to give it a try.

For the first few weeks of the new medication regimen, the only changes I saw in him were his appetite and sleep patterns. He was ravenous and slept during the night. Around the third week, I was swearing that there were no other measureable changes. He could just as easily be having a good behavioral run. Then one day the toilet in his bathroom backed up and started to overflow. Now, normally, he would come running out of the bathroom screaming and flapping and grunting. This time, he walked over and simply said, “mama, there is something wrong with the toilet.” I remember standing there staring at him, thinking, ‘this was an extremely appropriate response to the situation. The drug is working”.

He took the medication for about two years and many of the aggressive behaviors we had seen in the past disappeared, others slowed and became more manageable over time. He was the best part of himself almost all the time. He was able to think without all the emotion and make better choices, he was able to participate in his academics and socially with this peers. Don’t get me wrong, he was still Alex….he still had Down syndrome and Autism, but the most extreme, impulsive and aggressive behaviors were lulled into submission with Risperidone

We saw a huge difference at school, the calls from the principle all but stopped. We found out that Alex learned more like someone with Autism than someone with Down syndrome. When we made these small shifts in the way information was presented to him, he started to read. He learned he really loved science and math (making his geeky mama so proud). He learned he really liked school. He made friends.

I pushed to continue to have a behaviorist work with Alex on coping skills in preparation for eventually taking him off the meds. We found the portions of ABA and other methodologies that worked for him and ditched the rest. Once we were not constantly on ‘high alert’ I was able to better understand what his behavioral triggers were and adjust my behavior and our schedule to better suit him.

Two years later we weaned Alex off Risperidone over summer break, hoping that the tools he learned and the maturity he gained would compensate. They did. Alex has been drug free since

If I have learned anything from this experience is that we don’t fully identify with any one thing or diagnosis. I’ve learned to ‘work the problem’ and not bind (or blind) myself by looking only through the filters of a specific diagnosis. I no longer Google ‘teach to read Down syndrome’ but just ‘teach to read’ and I find the best parts of each methodology and cobble together what works best for Alex.

I learned that too much information clouds the view. I learned to surround us with experts and to respect their expertise in the same way that I expect them to respect that I am the ‘Alex’ expert. I learned that while he needs structure, he needs me to be flexible and resourceful. I learned how to be a good advocate for my son and now on to the next phase….letting go and allowing him to advocate for himself.'

1 comment:

  1. Tara, thank you so much for sharing your story. It is very much appreciated!