Guardianship and Autism

As I sit at my computer I can tell a beautiful fall is just around the corner.  The leaves are just waiting turn bright shades of yellow and orange, and the nights are about to get cooler – I can smell it.  I look forward to the fall – mostly. This fall there are added events. It just happens that this year we will once again go to the polls to vote for the candidate that best reflects our hopes for the future.   Matt loves politics and will eagerly go with me to the polls to vote, but Matt’s vote doesn’t count.  I have yet to tell him because it breaks my heart.  Matt, my wonderful 26 year old son, was deemed legally incompetent at the age of eighteen and that means he is not eligible to cast his own ballot.  How do I tell him that in this land of freedom, equality and diversity, that he loves so much, that his voice will not be heard?  It hits me twice as hard this year because it is also time again for me to complete the Guardian’s Annual Report.  Filling out the report is not difficult, but the weight of it on my soul can be very difficult indeed. 

In order to become the legal guardian and conservator for my autistic son the court had to first find him incompetent to manage his own affairs.  It was (and still is) a very emotional process.  It is something that I had to choose to initiate because I knew Matt needed me to do it - but that doesn’t mean I took it in stride.  It literally took years of thoughtful contemplation to even begin the legal process.  I tried my best to weigh the consequences for both obtaining guardianship and for not pursuing it all. Unfortunately, each comparison always pointed toward the “must get it done” side of the argument.  No matter what people might tell you, having your child deemed legally incompetent is neither an easy route nor a desired one.  I felt all those hopes and dreams in the back of my mind – the ones where I pictured my son being able to make it on his own one day – begin to disappear as I put pen to paper and signed that one official document. I realized in an instant, before the ink even had a chance to dry, that this beautiful mind, this wonderful young man that is my son, would never be like so many other autistic people – people like Temple Grandin who have made it on their own.  He would never be completely free to make his own decisions every day, or have full independence to live the life he chose to have. 

It is not something to be taken lightly, the role of Guardian, and yet I can see very clearly that it could be easily abused.  Guardianship does not mean dictator – it means protector. My son needs me for some things -I accept that and Matt accepts that - but I also need to allow him as much independence as possible.  The hard part is figuring out where my role as his guardian begins and ends.  To me, it’s like chasing shadows across the lawn as the sun moves across the sky. Just when you think you have it all figured out the light shifts.   The shadows can either become a deeper shade or become so thin as to let small beams of light poke through.  And it never ends, this shifting of responsibility.  Even as an adult, Matt’s autism is in flux.  I have to remind myself that just because there are some things he can’t do now that doesn’t mean he may not be able to do them next year, or the year after, or even 10 years from now.

 I knew Matt needed me to help him after the age of eighteen, as he was still in high school with graduation coming up quickly.  Without guardianship, Matt would’ve refused to be given speech therapy, would have thrown away his IEP and never would have fought the school system over the end of course exam in English.  He needed that extra writing time and to have his exam read to him.  Without guardianship, Matt would not have graduated number 4 in his class that year – and probably would not have graduated at all. Not because he didn’t want those things, but because he would not have understood the implications for not having an IEP.  Matt can’t communicate like you or I, he can’t tell you his problems, his fears, his confusion, can’t foresee the consequences of his actions, and he can’t do finances.  The worst part for him of course is the difficulty talking to people. Please understand, Matt can’t– not won’t.  He is learning every day, and because we have a special type of communication between us I can help him.  Communication is at the heart of his “can’t”.  As we work on communication and as his ability to speak to other people improves I know some of those “can’t” items will change to “can”.  I know this.  I have watched it happen many, many times before.  It takes time and teaching and love. 

My role as Matt’s guardian is one I take very seriously.  I am his mother and as his mother I shower him with love, acceptance and opportunity to be all he can. I am his best friend and his shoulder to cry on.  As his guardian I am his teacher, his mentor, his financial officer, his personal healthcare professional, his cruise ship director and his drill sergeant. The roles overlap quite often I assure you.  So, as another fall arrives and I fill out another Guardian’s Annual Report I think of my son’s future.  I still have dreams of independence, but they are not as pristine as they once were.  Matt’s independence will be on a sliding scale between what he can really achieve and what he can not YET achieve.  I know I will continue to teach him every little thing I can think of, and we will tackle another year one day at a time. 

He will again go with me to the polls on voting day as he has always done and again he will walk beside me as we go behind the curtain to vote.  I know Matt is not incompetent on politics and is actually very aware of which candidate has his best interests at heart. And again, I know I will not tell him that his freedom to vote as a US citizen has been stripped from him. Instead, like on every Election Day within the past decade and a half, I will give my son the voting pen and he will mark the ballot. As his guardian I am his voice and through me his voice will be heard because on voting day Matt is my right hand – the one that holds the pen.  As his guardian, I will continue to protect him and will share my freedoms with him always, until that day – soon, I hope -when he can have his own freedoms returned.