Monday 25 February 2013

Help!

Maria graduates with full honours
The medical professionals did have one trick up their sleeve; they were very quick to point-out there was a support group for RTS in the United Kingdom and we might want to get in touch. This turned out to be the only truly helpful advice they gave us in the end. 

We contacted the RTS Support Group in 2012 and went to our first event in June that year. The people we met very quickly became our extended family; they're the only people we trust to know what it's really like to be the parent of an RTS child. We appreciated meeting people who, like us, were still recovering from the shock; people who were still working out the answers and keeping their collective chins up.

The event gave us the chance to meet RTS folk of all ages and after our first meeting we felt relieved not to be alone in our confusion and grief; to have the moral support of such a friendly community was a necessity

After that weekend, Joan and I looked forward to the next event. This turned out to be in December 2012. This was good fun too and we found ourselves also invited to a Christmas dinner at Duxford Air Museum, hosted by American F15 pilots. Both Maria and Isabella received lovely presents from Santa and ran amok among the museums precious aeroplanes!

The RTS events gave us a chance to meet other parents, learn snippets of information, compare developmental stages and get recommendations on the latest iPad software.

At each event, Professor Chris Oliver and his CEREBRA research students at the University of Birmingham, UK, would turn up and report on their latest research findings in RTS. At the same time they would ask parents to volunteer their children for some research experiment. It gave us all a chance to participate in the process of better understanding RTS. Often, Chris would offer consultations with parents to discuss psychological aspects of RTS behaviour.

All in all, this felt like a much better way to help Maria but, at the end of the day, we still needed our questions answered in order to help Maria with her individual needs. 

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