Utter Autism

April 10, 2010

Facing the Reality of the Future

Last year I went to a workshop on guardianship given by my son’s school.  A lawyer and disability advocate came to talk with parents of children with disabilities about the need for and process of obtaining legal guardianship. 

Once he’d finished his presentation there was time for questions and, as so often happens when you gather parents of kids with disabilities, some emotional venting as well.  The lawyer had touched on the need for specifying alternate guardians who could step in and take over should anything happen to the parents.  This started a conversation about the ethics of putting that burden on the disabled child’s siblings. 

I completely understand how they all felt.  How could it be fair to expect this person to care for that person simply on the basis that they had the misfortune of being born into the same family?  It just doesn’t seem right.  Shouldn’t they have an option? 

Some parents even told stories of how they’re typical children were already ‘caring for’ their disabled siblings in some ways and how these siblings talked about a future of caring for their siblings as if it were just normal or expected.  And these parents clearly felt very badly about this. 

I hesitated to tell them all my secret.  I AM a sibling to someone with a developmental disability too.  So I have a rather unique perspective on all of this.

I explained that while it may not seem ‘fair’ or ideal, that one of the siblings would eventually need to become the guardian and/or advocate for the disabled child was simply the reality.   And facing that reality as a family sooner, rather than later, was one of the best things they could do for themselves and their children.

I understand as a parent how tempting it is to imagine that you’ll always be there to care for your disabled child.  But the facts are that they will very likely out live you.  We can either spend our time and efforts preparing for this reality or else pretend it doesn’t exist till we die… leaving our children to have to try to muddle on from there. 

We can do the hard work of setting our disabled children up with care – residential services, daily programming, employment, social services, Social Security, guardianship, etc.   But that’s not the end.

This group of parents were obviously on top of things.  They were, after all, there to face the reality and learn what they needed to learn to get the job done.  I commended them on that but warned them that the job of advocating for an adult with disabilities wasn’t something that was done once and forever.  It’s an ongoing task. They could never ‘finish’ the job so that sibling advocates would not be needed. 

It’s interesting to note that all the parents in the room were able to identify a sibling who either had a special bond with the disabled child or else had the personality traits of a good advocate.  I encouraged those parents that when their children spoke about taking care of their siblings in the future, that they should embrace that reality with their kids – to give them strength, encouragement and faith to be that advocate.

I’m acutely aware that one day Adrian’s siblings will someday have to take over my job as advocate.  It will mostly likely be Gee who takes over the bulk of this task but I don’t feel badly about this.  She’s smart, she’s strong and she’s got a special bond with Adrian. 

I’m going to do everything I can to make that job as easy for her as possible. I’ll set up what I can for Adrian, I’ll teach her what I know about advocating and I’ll do what I can to support and prepare her for the task.

I know she’ll be an awesome advocate.  I know it and I’ve already told her so.  And Bee and Zee will be there to sustain and support her the same way my sisters support me in advocating for my sister. 

The future really isn’t so scary.  The reality is Adrian is a very lucky guy.  He’s going to have an awesome advocacy team on his side 🙂

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