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When I had a will written I learned about something called a letter of intent that is referred to in a will but can be changed without having to update the will. I put a lot of thought into that – with messages for both of my children and indications of what events, trips and vacations I wanted my son with Down syndrome to enjoy, using any money that was left in the special needs trust for him. As he grew up I added to the letter and of course updated it considering his interests and experiences.

Thinking about what we want for our sons and daughters if we are not here for them naturally leads to planning a better quality of life and richness of experience for them while we remain. I realized I did not want for him to wait until I was gone to have the best possible life!

One of the most enjoyable outcomes of moving in that direction was attending a “Person Centered Planning” introductory meeting sponsored by our county ARC and local school district. My son was invited to participate in a demonstration and it was an amazing experience. Other teens and young adults at the meeting all had such different levels of participation, or perhaps I should say, ways of communicating – but they were the true centers of the planning process and each one of them just knocked me out with their ambitions and goals, their interests and accomplishments.

I wrote an article about it quite a while back:
Person Centered Planning
http://www.bellaonline.com/articles/art53731.asp

There are great books by John O’Brien and Connie Lyle O’Brien
http://tinyurl.com/PersonCntrPlng
and I am sure they must have a webpage, too.

It’s good to think about these things well before our children reach the transition ages of 18 and 21 – but we get so busy with day to day life and our various family adventures it’s a wonder we can plan a weekend more than a day in advance. Remember all the professionals in our children’s lives have vacation and retirement benefits already in a certain structure – and they will be living their own lives with their own families in ten, fifteen and twenty-five years without any responsibility at all for our sons and daughters. And that is just as it should be – but we also need to take some time to make a five year, ten year, and twenty-five year plan.

Thank you for bringing up this topic ~ it’s one that needs to be revisited often, like changing the batteries in smoke detectors.

Pam W
SE of Seattle

http://oppositekids.blogspot.com/2009/07/kaylas-vision-statement.html