Guardianship of an Autistic Adult

ambivalent smileyWell.  It is done.  I can’t decide if that should be in capital letters with a big smiley or in teeny tiny letters with a serious scowl.

We have the finalized guardianship paperwork for CJ.  It is stamped, signed and filed with the court and is now a matter of record.  I had such mixed feelings when I opened the envelope and slid the papers out into my hand.  I’ve been working on this and sweating it out for months now, feeling certain that we got on top of this whole thing in a timely way.  At the same time, I was feeling at sea, out of control and unsure that the system would work the way it was supposed to.  It did.  And now I can only liken it to the day after a big event, like a wedding or party… you plan and plan and organize and push and race to the finish line.  And then it’s over.

It felt so final and so flat, standing in my kitchen with a handful of paper.

I had a friend compare it to getting your final divorce papers two years after the end of the relationship and a year after the divorce agreements were done.  I have never been divorced, thankfully, so I can’t answer to that one, but it feels true somehow.  But while a divorce is an end of one thing and the beginning of many other possibilities, this just feels like a beginning.   A beginning with no end.  A beginning that will define the rest of our lives…and “forever” right now feels like a cell door clanging shut.

This is it.  With all the years of therapy and alternative points of view and experiments with diet and drugs and new outlooks and methods, here we are.  It could have been so much worse without all that…but it’s not going to get better either.  My son is an adult and has been declared legally unable to manage his own affairs.  This will be our truth until my husband and I die and it will be CJ’s truth for as long as he lives.

It is a relief to have things defined and finalized.  But it’s a life sentence at the same time.  I’ve been a warrior mom for as long as I’ve been a mom.  The job description for the mother of a child with autism would fill a library shelf…but there’s not much in it about global acceptance. We learn to accept limitations over here and start working out therapies and ways around those limitations over there.  We give here and push back there and fight and cajole and adjust and flex around and never, ever give up.  So I haven’t had much practice at just accepting.

I guess I’d better get started.

A few weeks ago, the preliminary paperwork came by email for review and I printed it out.  I skimmed it several times.  It all seemed standard.  As CJ’s guardians, we can determine where he lives, his medical treatment and make social decisions for him.  All the things you would expect.  I handed it to my husband when he came home from work.  He read it, made a few comments…and started laughing.


Me:  What on earth??

Him:  It says here:  we may NOT commit him to an institution.

Me:  I…wait…what?

Him (still laughing):  We also can’t consent for sterilization OR… (my favorite) for him to be part of an experimental biomedical procedure.

OK then.

I can see why they would include some of these things, but it’s kind of disturbing too.  Heck, me…I was just worried about being able to talk to the school and the doctors.  Entering him in some biomedical experiment hadn’t exactly occurred to me.  Perhaps I lack imagination.  I don’t think CJ would be on board unless there was a guaranteed outcome of turning him into a Florida State halfback.  But I just keep picturing Frankenstein.

It’s funny that now that he’s an adult, we have less freedom in some ways than when he was a minor.  He’s now under the protection of the court and we are answerable in a way we weren’t when he was a child.

I wonder if we could have entered him into biomedical experiments as a minor….

Chris and I still have to take a class to learn all the rules and accounting procedures involved in guardianship.  And we still have to create an annual plan and have to submit that plan to the court each year.  Just wait, Your Honor.  Just wait.

Because, you see, now that this guardianship thing is out of the way, I can finally turn my full attention to pulling together all the threads involved in getting CJ’s House out of my head, on paper and into reality.  There are CPA’s and lawyers and experts and donors and other parents to talk to…and boy, you want to see a plan for CJ’s future?  ‘Cause here it comes.

Sorry…but that whole Acceptance thing may just have to wait.


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