Archive for Guardianship

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.


The System Worked

gavelIt’s official.  The judge signed the paperwork granting us guardianship over CJ and we got the unofficial copies in the mail.  Legally, he’s protected again.  Emotionally, I’m still sorting it out.  More on this in a few days.

Screw Loose

multipurpose tool

Feels like forever since I last posted.  It’s that time of year.

So, what’s been going on?  Well, we had an IEP meeting at the end of the school year.  I finished and mailed off the paperwork for the application to become CJ’s Guardian Advocate. And I dealt with the yearly renewal for benefits through the State of Florida’s Agency for Persons with Disabilitites (APD).

This year we had to provide additional documentation.  Things got interesting.  We had cashed in some savings bonds I found in a file drawer that were in CJ’s name.  He cannot have more than a certain amount of money in his name by the time he turns 18, as that would screw up the Guardianship application, so I knew they needed to be cashed in ASAP.

Of course, we all know that when you loosen a screw in one location, the universe is obligated to tighten a screw somewhere else.  It’s a cosmic law or something.  So APD now had to make sure that CJ didn’t have too much money.  Fair enough.  However, they had to make sure he didn’t have too much money RIGHT NOW…as in, right away, as in within days.

Tick tick tick tick.

My favorite part of dealing with them is the math. The letter they sent was dated 5/22. The letter stated that if I did not get the requested information to them by 6/3, his benefits would be cut off. (Oh, they will do it, too.)  I received the letter on 5/25. Naturally, it was a holiday weekend.  The soonest I could do anything was 5/28.

I ran around calling places, calling people, holding the line and then holding some more.  Calling APD, calling the bank.  Since my husband is the parent listed on CJ’s account, Chris had to run down to the bank on his lunch hour to sign mysterious paperwork and then he had to fax everything to APD the next day.  We got it all faxed on 5/30.  By 6/3, I had nearly recovered from the experience.  We can now officially say that CJ does NOT have too much money to do anything more than buy Air Bud DVD’s on sale.

Then we went on vacation.

Next week, I have a meeting scheduled with a company that runs group homes for people with varying needs, several of which are owned by foundations.  I am searching the community for people who are already doing what I’m planning on doing, even if their end goal is different than mine.  I am currently working on a very long list of questions, as I still have a lot to learn.  After this meeting, I expect to be a lot closer to launch date for CJ’s House.

It seems that no matter how much I get done, my “to do” list just gets longer.  There is a light at the end of the tunnel.  There’s no train, but it just seems that the hurdles are getting more and more visible.

See you at the next jump.

Signing on the Dotted Line

Sign on the dotted lineWell, I finally did it.  “It” is in the mail.

I sent off all the guardianship paperwork to the attorney.  I sent the applications for my husband and I to be approved as guardians of our own child.  (I was thinking that 18 years of parenting would qualify us, but I understand why they have to be careful)  I also sent the applications for my mother and sister to be successor guardians.  I sent a letter from his doctor saying that he was disabled and would be for life.  The diagnosis was there in black and white.  It was a little hard to look at, as this time, it is for eternity.

My sister, who is still in the most denial about CJ’s condition, says that in her head she keeps thinking, hoping, dreaming that he will just wake up one day and be typical.


I also sent a copy of his IEP and his paperwork from the state showing that he receives services.  All of this along with a big check.

I put it in the mail.  It’s done.  Now, the waiting begins.

I applied for Social Security Disability on CJ’s behalf as well, and sent the SSA the paperwork at the same time.  I think I thought it would make me feel better somehow to make him permanently disabled in writing all at once on the same day.  I’m not sure how that’s working for me, so far….

As I sit now, dealing with the State of Florida’s APD (Agency for Persons with Disabilities) about his services and our insurance company about his medications, I am realizing that this is never going to go away.

A friend of mine recently posted on Facebook that when her son turned 18, something was said about being all being together forever and planning for retirement for three and not just two.  It was said in jest and it was funny, but it was so so true at the same time.

We are truly entering a new and unchartered chapter in our lives.  I don’t wanna go.  Can we send Captain Kirk instead?  Mr. Spock would be really useful right now!!

Autistic Guardianship or The Lid on Pandora’s Box

Autism Adult GuardianWell, I’ve done it now.  I have actually started.  I have a appointment to meet with an attorney about guardianship. I have started the research on a non-profit organization to build a house for CJ, his friends, and hopefully others like him.  And I have let this blog go live.

There is a part of me that is so empowered and excited.  There’s a part of me that is scared to death.  There is a lot riding on this.  My son really does need to “move out” and become more independent.  He is happier when he is with his own friends, doing his own activities.  He loves going to youth group and camp.  He loves going to baseball and football practices and games at school.  I love seeing him happy.  I love the idea of restoring some balance to our lives.

There is a HUGE learning curve with all of this.  There are big questions.  Can I do it by myself?  Do I need an attorney?  Do I need an accountant?  How does it all run?  Will it end up costing more this way?  Will it end up being more work this way?

There are so many unknowns at this point.