By Jaquie Mills (Eli’s mother)
Eli’s microboard is called Blazing Condor Soul Explosions Inc (BSCE). Eli is a bit of a character as you can see from his Microboard name. His microboard was the first Vela Microboard in Australia. Members of BCSE Inc include family, friends and former support workers.
When Eli was in high school I really started to worry about how I would be able to continue to support Eli to live an ordinary life in the community. In 2006, myself and my partner Darryl flew to Baltimore in the USA to visit another family who had a son with Angelman syndrome and a microboard which had helped them to set up a good life for him. On our return, I set up a circle of friends around Eli and then worked in partnership with the Disability Services Commission and Perth Home Care Services (now Avivo) to develop the Microboard model with families in Western Australia.
Eli’s microboard members include Eli in their own lives. Microboard members Coral and her husband Jason and brother Joe are keen footy fans and they wondered if Eli would like to come along with them to the football each week. Eli had never been to a football match and it turned out that he loved footy! Eli doesn’t speak so when the other team scores he does the sign for “dickheads”! He has now been going for many years and is well known at the Bayswater Football Club.
As for many people with disability, accessing medical care safely can be tricky for Eli. His microboard members at times attend medical appointments and treatment with him. It makes a difference when the person has a group of people around them who care about their wellbeing. One of the microboard members did an over night shift with Eli when he was in hospital.
Eli communicates using a PODD book. Coral designed these communication boards for Eli’s PODD and prints and laminates them as well as his schedule and other resources. Microboard member Sophia programmed PODD for Compass on his IPad. His other microboard members have learned to use the PODD and help model how to use it with Eli.
Eli’s microboard decided they wanted to do a trip with Eli to the Gold Coast in Queensland. We needed a large vehicle to accommodate Eli’s wheelchair and other equipment for the trip. Hiring this vehicle was going to be costly so we decided to do some fund raising. BCSE developed a relationship with Eli’s local Coles store through BCSE member Jason who works there. They provided us with some buns and sausages and the microboard ran a couple of sausage sizzles to help pay for the vehicle hire.
When we arrived at the Gold Coast the microboard members supported Eli to ride a roller coaster safely. We knew it could be potentially dangerous for Eli as he has a number of medical issues. So the microboard members tested out all the rides and rated them from safest to most risky. They also problem solved how to keep him safe on rides – sitting him in the middle so his arms didn’t move outside the carriage and things like that. While he didn’t go on any of the highly risky rides he had a fantastic time on some of the smaller ones.
Vice chair of BCSE Liam is a pool guy, which comes in handy now Eli has a spa at his house. Liam checks the chemicals in the spa every fortnight. He also checks in on how the house is going and shares any concerns with us and the microboard.
Luke is a member of our local State Emergency Service. He makes sure we have the right fire equipment and evacuation procedures. He enjoys writing safety policies and procedures.