Monday, April 21, 2008

Frog Update

We are back from Frog’s first Neurology appointment. They were not able to give us any new insights, but the Neurologist confirmed what we have suspected all along. Frog is part of that rare (or not so rare, but often undiscovered) subset of ASD where receptive language, social awareness, and the desire to connect with others is fully intact, but he is so severely limited by his lack of expressive language, sign, gesture, and inability to imitate that he can’t regularly demonstrate the extent of his knowledge and awareness. He compared Frog to a few other kids he had seen in his practice who were considered severely impacted-low functioning ASD and then they began to type or write when they reached 10 or 12 years old and were able to tell about everything they had been aware of over the years - Similar to Tito Mukhopadhyay or more recently Carly Fleischmann . We have started using Rapid Prompting Method (RPM) developed by Soma Mukhopadhyay to teach her son Tito. Through RPM we have discovered that Frog knows his letters and numbers, listens to the stories we read and can answer questions about them, wants to know more about dinosaurs and cars and wants to learn to ride his bike, can read some words, is frustrated when people don’t know how smart he is, thinks his sister talks too much and he wants a dog. I’ve been trying to figure out why he can and will choose between two answers for RPM, but was so hit and miss with discrete trial. I can see two major differences: The physical motor plan for the activity stays the same and has the same prompt (giving him the pencil) and the information is constantly new – he is not being asked to do the same meaningless task over and over again. He has also started to request to write letters and after months of avoiding his voice output system, he is now exploring it a little on his own – especially the alphabetized keyboard screen. I suspect he will be writing and/or typing within the next year or two.

So our days are now structured by the rhythms and open intake philosophy of ENKI using DIR/Floortime, sensory play, communication through RPM, and lots and lots of letters. It is starting to feel like school – and we are starting to make some progress on the goals that are most important to us as a family. We also found a new social outlet for Frog – JUMP PLANET! While we were in Seattle for the neurology appointment, Jump Planet was hosting a special needs family night. We weren’t sure how Frog would react to all the people in the room, but he dove in with wild abandon. The set-up was safe and contained so we could give him the freedom to run around and choose his activities independently. He had a ball – jumped with other kids, tolerated unexpected bumps and jostles, no pinching, no biting, no meltdowns. We will defiantly be going back.

I will also be expanding my DIR experience with an on-line conference. I’ve wanted to go to a conference for several years, but could not find it in the schedule or budget to be away from home for that amount of time. Dr. Greenspan and Rosemary White, OT are putting on an interactive on-line version of the conference training starting on April 25th . Parents and professionals from all over the world have signed up – I’m excited about the chance to compare notes and experiences with this diverse group.

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