Welcome to Illinois

Thinking about the future

Posted in Personal by Matt at WelcometoIllinois on January 25, 2009

Who will look after G, should it be necessary, once his mother and I have passed on? It’s not a question I like to dwell on, but it was a significant part of the thought process we went through in deciding to continue with the pregnancy once we knew he would be born with Down’s syndrome.

While it was one thing for us to decide that we wanted to, and were capable of, caring for someone with additional needs, we were very aware that it was quite another to ask G’s older brother J, or any other relatives, to do so.

I was reminded of this today while reading this article in Knoxnews (which covers Knoxville, Tennessee) which focuses on the future choices for Matt Boyer, a 29-year-old with Down’s syndrome.

It appears that Matt is very fortunate to have a loving family around him who are thinking about his future – not only his parents but his younger brother Spencer.

“I totally decided on my own that I would take care of Matt,” says Spencer Boyer. “Anybody I ever dated, and my wife currently, knew that from the beginning. I brought it up with my parents when I was 15 or 16.”

I can’t help but hope that J will feel the same about G but I don’t want him to feel compelled to care for G and I certainly wouldn’t hold it against him if he felt it was not something he was capable of. Anyway, hopefully this isn’t an issue we’ll have to worry about for some time.

Funnily enough as I write this J is being informed by Justin on Something Special, that “family is the special people who care and look after you”.

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3 Responses

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  1. rickismom said, on January 25, 2009 at 10:38 am

    There is a vast difference between “caring for” and “looking out for” a sibling. Ussually by the time a parent dies, the sibling is in some type of community apartment, or in his own apartment, hopefully with some government help. The siblings best contribution is to take a long hard look once or twice a year to see is things are going OK, or if someone has to call out “foul!”. However, he should not be the only one. I DO relay on Rickis siblings for the future, but that is because
    1 They are numerous
    2 we have set up a system that it not fall on one of them

    If you only have one other child, I urge you to try and get hold of Woodbine’s out of print book:

    Laying Community Foundations for Your Child with a Disability
    Linda J. Stengle, MHS
    ISBN 0-933149-67-0

    It has a LOT of good ideas………

    • welcometoillinois said, on January 25, 2009 at 11:39 pm

      G has just the one sibling, at the moment, but he has more than enough cousins who adore him and will look out for him. Fortunately we don’t have any worries on that front. In time we will get around to setting up a system. There is (hopefully) plenty of time for that. Thanks for the book suggestion – I need to explore the Woodbine library properly at some stage.

  2. starrlife said, on January 25, 2009 at 1:37 pm

    Great post, good thoughts…. we have a special needs trust set up for our daughter and, although her aunt,uncle and their kids (close to my child’s age) live 5 hours away we go out of our way to cultivate that relationship since they have offered to be the trustees/future guardians if something should happen to us. It’s a big comfort to us…

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