The Good Life Newsletter October 2016

We are on the hunt for new Board Members

Like with all boards,  Isaac’s Band of Brothers & Sisters needs to be refreshed from time to time as existing members get busy and have to focus on other things.

So if you, or anyone you know would like to be on the board please let us know.  You can learn more about what’s involved here.

Our Annual General Meeting is also coming up on November 10.

Outgoing board members Rob and David
Outgoing board members Rob and David

Isaac votes in Federal Elections

Isaac’s family and friends with a keen interest in politics created some picture resources that we used to explain to him what some of the key policies each of the parties where focusing on.  Then we asked him to put the parties in order of which he liked the best.  We did this several times and on each occasion he picked a similar order.
We also developed an aided language board with pictures so that Isaac could answer the questions that the electoral commission staff would ask him.  On the day he did really well and answered all the questions and watched curiosly as I transferred his picture ordered vote onto the ballot paper.  He carried the ballot paper over to the ballot box to post his vote.

We are not sure if he really understood but we figured he would be no less well informed about his vote than many other people voting that day!

Learning about the parties in the election and what they stand for
Learning about the parties in the election and what they stand for

Cheering for the Raiders

Isaac has been a champion Canberra Raiders supporter this season.  He’s been learning to stay for the whole match, how to talk about the football with his PODD communication book, how to do the Viking clap and who the best team in the universe is – go Raiders!  Look out for him in the 2017 season.

Supporting the Canberra Raiders
Supporting the Canberra Raiders

Pizza and PODD

Every three months or so we are going do a Pizza and PODD night where we play games using Isaac’s PODD so that we can become more fluent in using it with Isaac.

We had a fun time playing PODD Bingo where we had to combine symbols to make sentences and work out what you could say and how you would say it on the PODD.

Playing PODD Bingo
Playing PODD Bingo

Supported Decision Making Training

Tina from ADACAS came along to provide Isaac’s microboard with some supported decision making training.  She helped us challenge the idea that we must know and understand everything to be able to make a valid decision.  Many of us just make decisions based on a gut feeling without really knowing all the pros and cons.  I know I didn’t understand all the fine print on my mortgage documents!

So it’s important for us as Isaac’s microboard members to assume that it is possible for Isaac to learn to make decisions and we must give him lots of opportunities to learn how.

decision-making
Supported decision making training

Beadlemania News

Isaac has been spending increasing amounts of time at his house – Beadlemania.  He is now spending every second Friday evening and Saturday with his housemates.  His eyes light up when we tell him he is going to stay at his house.  It’s so awesome to see him so happy to have time away from his parents and hang out with friends.  Such a different scenario to the days of going to respite care.

Sadly we have had to say goodbye to two house mates as they are moving on to other things but we now have Shane and are on the hunt for a fourth flatmate who will also have a paid role as a casual support worker .

The housemates have been busy in the garden putting in a community vegie patch.

Recent additions to the animal menagerie are some little baby chickens which we hope will all be girls and lay lots of eggs for Isaac and his housemates to eat and share with the neighbours.  You can follow the adventures of Isaac and his fellow Beadlemanians on Facebook.

Isaac had a fabulous 19th birthday party at Beadlemania with family, friends and housemates.  His cake was made by the mum of one of Isaac’s support workers and was a really big hit.

Isaac delivers has two paying customers

Isaac delivers is Isaac’s start up delivery business.  He now has two paying customers –  Marymead and Hire up.  He has a great new uniform which was kindly donated by The Uniform Shop at Kippax.  He continues to do his magazine run until he has no time to deliver them.

Isaac Delivers will provide a professional business delivering cost-effective and reliable services to its clients.  Through this business, Isaac will be seen as a worker who performs a legitimate, useful and valued role. Customers can expect a professional and reliable service.

Isaac enjoys working in his business – he loves driving in the car with the radio going and the regular routine of meeting people.  It’s a work role that is valued by people in the community and that helps him to be perceived by others as contributing and skilled rather than dependant and incapable.  It provides him with continued opportunities to learn and develop life skills.  He is also highly visible in the community which means that he has many people keeping an eye out for him and making sure he is safe.

Isaac in his new uniform
Isaac in his new uniform

We are raising money for a car

Isaac needs wheels for work!  Isaac Delivers will be more viable if we can buy him his own car and not have to pay a fuel allowance if his support workers use their car – it  is really expensive.

Ideally we would love to buy him a little electric car to zip around in with his support workers and have it painted in blue with his logo on it.

You can help us by donating or spreading the word to your family, friends, neighbours, work colleagues and so on.

go-fund-me

Our New Team of Support Workers

Isaac now has a team of fabulous support staff – Josh, Dan, Manon and Fiona.  Thank you to the microboard for helping with the recruitment and thank you to Microboards Australia for providing us with some excellent recruitment coaching.

Isaac's support team meeting
Isaac’s support team meeting

It’s not all beer and skittles

I don’t want to paint a “Pollyanna picture” of building a good life for Isaac as something that has been quick, easy and always successful.  It has been none of those things. Nor has Isaac’s disability somehow lessened.  We are still faced with huge hurdles to work around every day.

We still don’t always get a full night’s sleep.  We still have mountains of clothes to wash.  We still have to prepare special meals for Isaac. We still struggle to think of places we can visit as a family where Isaac will be happy and not become anxious and fall into behaviours that others find challenging. We still struggle with medical issues.

We are still wounded by the comments and actions of others that stem from an unconscious belief that Isaac has less value.  We are still frustrated by the way our community sometimes doesn’t even think about how they might include Isaac.

We feel let down by the lack of interest in helping Isaac to have a good life by those we had hoped would be there for him. We feel hurt when we invite people to social activities with Isaac and nobody shows up. We feel frustrated that giving Isaac a good life is seen by some as lying solely in the realm of paid services and not with his friends, family and wider community.

It would be very easy to give up.

But the freely given support of the people who are involved in Isaac’s life is treasured.  It has led to achievements I talk about in this newsletter. The smallest wins give us enormous pleasure. They keep us going. One foot in front of the other.

Sometimes its lonely and tough
Sometimes its lonely and tough

 

 

 

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