Archive for August 26, 2013

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.



respite ringRESPITE – [res-pit] – noun

1. a delay or cessation for a time, especially of anything distressing or trying; an interval of

relief: to toil without respite.

2. temporary suspension of the execution of a person condemned

to death; reprieve.

3. to relieve temporarily, especially from anything distressing or trying; give an

interval of relief from.

4. to grant delay in the carrying out of (a punishment, obligation, etc.).

I am going with #3.  Autism doesn’t go on a courtesy delay, or cease for a bit now and then.  It requires 24 hour, round the clock duty.  It requires somebody (usually me) to be in the general vicinity of CJ day and night.

I won’t bother going into the various studies and opinions.  If you want to explore whether or not it’s true that mothers of adolescents or adults with autism have stress levels equal to soldiers in combat zones, be my guest.  I can’t say what my stress hormone levels are, or what’s high and what’s low in my body or bloodstream.  All I know is that sometimes, it’s sort of okay, and sometimes, it feels relentless and exhausting and sad and awful…really awful.

We are blessed, and I do mean blessed, with state-paid respite services under the Medicaid Waiver program.  This means that I can call an agency and request to have someone come to our home to stay with CJ so that I and/or my family can get out of the house and have a break.  Some of the people who come are amazing.  Once, we had a wonderful woman from the Bahamas who was a grandmother.  She was kind, willing and interesting to talk to.  Unfortunately, she had a full-time job and limited availability.  Eventually, she quit doing respite care.  It’s an ongoing problem.  Respite workers are trying to help…trying to provide a service.  But they get paid very low wages and rarely have enough hours.  They can’t make a living and they end up quitting.

When it comes to time, they are often unreliable.  Because of the low pay and limited hours, you can pretty much assume that most respite care workers have exhausted their other work options before they arrive at your front door.  If they arrive at your front door.  Among people who use respite care, it’s a well-known fact that you can’t generally count on them to be where they say they’ll be, on time.  Sometimes you get lucky.  Sometimes, you are left sitting  on the sofa as the sun goes down with tickets to a movie that started a half hour ago.

Sometimes, it is just not worth it to go through the process.  I have to weigh the time and frustration costs.  How much time and energy is it going to take out of me to get someone for a few hours on a Saturday afternoon so I can run errands?  Would it just be easier to just take CJ with me?  Would it be easier to just go at another time on another day?  How big a pain is CJ going to be if I take him with me?  Some days, he’s fine to go.  Some days, it’s a social and psychological nightmare.  Trust me, if he doesn’t want to do something, he can ruin your time.  You have to see it to believe it.  There is just something about a 6 foot tall, full grown young man pitching a fit in the middle of a store yelling, “Mom!  Mom!  I want to go!  Let’s go!”  For some reason, that really draws attention to you.  Those days can be really REALLY frustrating.

On the other hand, calling for respite, making precise plans, speaking with the agency and then directly with the respite worker, giving directions, and getting all one’s ducks lined up in a row, only to wind up watching the clock spin around as the hours of the afternoon disappear with no respite worker in sight…well, that can be several kinds of frustrating too.

So…I can commit to one kind of frustration, pretty much guaranteed, but 100% sure that I’ll have my groceries at the end, or I can take the longer shot, cross my fingers and hope that I’ll have a few hours to myself to recalibrate and do the hunting and gathering in peace, but possibly end up frustrated, trying not to be angry, trying to keep my perspective and understanding…and still needing to drag a reluctant CJ along for groceries at the end of it all.

If autism is a gambling casino, respite care is the roulette wheel.

It has been a great summer.  We were able to go to the beach with family and then managed to tag along with friends for another week at the beach.  (It is great to have friends who just let you and your craziness come along with them!).  The only really tough part has been getting a “respite”.  See # 3 above.  It’s all been fun and it’s been MUCH appreciated support from friends and family…but it hasn’t been a break.

I decided that desperate times call for desperate measures.  I got someone to come last weekend.  I had her come Friday, Saturday and Sunday evenings.  I had no plans.  My husband was working into the evening.  My daughter was at a friend’s for the weekend.  My friends were all out of town or not available.  No matter.  Friday, I ended up wandering around Target for several hours and then meeting my husband for dinner.  Saturday, I wandered around the mall for more than 2 hours.  Sunday, we took a friend to dinner for her birthday and spent more than 3 hours at the restaurant just talking.

It was all so ordinary.  It was all so normal.

I realized something very important.  Even when I think I’m doing okay, I really DO need respite.  I need some time alone.  I need some time away.  AWAY.  It is OK to need time.  I often think of what people say…you are no good to anyone else if you don’t take care of yourself.  On planes, they say that you should put your own oxygen mask on BEFORE helping anyone else.  Parents, and women especially, tend to take care of everyone else before themselves.  I (and many people I know) need to remember that we are better people, parents, spouses and friends, if we take care of ourself.

For me, the mom of an adult son with autism, a walk around the mall alone is a mask full of oxygen.


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.

B-Day is D-Day

CJ's cakeHappy Birthday, CJ!

Well…here we are. He is officially 18…an adult.  We are officially NOT in charge.

There were no casualties at the party. The cake was awesome and the friends were even better!

Now, I am stalking the attorney.  I emailed the office 7/30 for an update.  Tick Tick Tick Tick.  Remember that while we can file the paperwork for guardianship with the court, the court can’t act on it until CJ turns 18.  But the second he turns 18, he’s a legal adult and a free agent until the judge gets around to saying otherwise.  If he gets into medical trouble or legal trouble before then, he’ll be treated as an adult able to consent to care or otherwise.
This scenario gives me nightmares at the moment.
I was told that everything was filed with the county and we were waiting for a response from them.  We should know something “the next week.”  I managed to wait until the end of last week (it was heroic) and emailed again.  Again…the case is filed and will be handled by the attorney the beginning of next week.
A startling thought occurred to me:  could it be that this is all routine for them and not the center of this known universe and any others that might be next door to ours?  Could it be that they feel a legal play by play is unnecessary?  When I agreed to a retainer in return for a legal perspective, maybe that wasn’t an unspoken agreement to make my perspective their own.  Did I get it backwards??
Well…it is NOT routine for me and I can’t sleep at night.  My son is legally naked, so to speak, and it bothers me.  A lot.
I actually fell asleep while I was talking to a friend on the phone yesterday.
Oh fantastic.  Apparently, the judges are all out at a conference.  Ugh.

Just One of the Boys

Man caveIt wasn’t long after CJ was born that I noticed something: Men…are different from women.

A little late, you say, given that I already had a kid?

No, no, no. Not THAT kind of different. It’s just that I’ve noticed that men have certain…well…qualities.

Most men don’t want to engage in long meaningful conversations.  They don’t want to look at each other any more than they have to to get the channel changed or another beer brought from the fridge. Men think that sitting on a couch facing the same way silently watching TV for hours is socializing. When they do get up and move around, men prefer to do something.  Build something, throw a ball, run, mow, fix, etc.  And most men prefer doing one thing at a time, completely, before moving on to the next thing. Multitasking is unpleasant and to be avoided.

I have seen men I love work side by side for an entire day and not know one darn thing more about each other’s lives at the end of the day than they did when they started that morning.

Me: Thanks for fixing the car. You guys did a great job.
Him: No problem!
Me: Hey, how are he and Karen doing with the new baby? That first week home from the hospital is always rough.
Him: …. They have a new baby?
Me: Yes…. You know…the one that was born two weeks ago after her mother died and he lost his job of 15 years?
Him: …. Oh. He didn’t say.

Does any of this sound kind of familiar? Maybe a little bit…autistic?

There. I said it. Really, I had to say it. Because it explains so much.

From the start, men have always been attracted to CJ.  No matter how much his autism was driving his behavior at any moment, men have rarely had a problem having him around.  Men usually think he’s funny even when he is acting crazy.  When he was a baby, big, tough men would stop me on the street or in stores and tell me how cute he was.  Seriously, one day a work van stopped right in the middle of my street when I was crossing with CJ. A tough-looking construction worker leaned out of his window and said, “That is one cute baby.”  Fifteen years later, I am still a little shocked.

Even now, it’s no different. Football, basketball, you name it. All the players love him. He’s the kid who gets the shout outs and the “Woot!” when he shows up on the field. It’s something about his energy, I think. Autism or no, he just radiates “BOY!” And men and boys, without comment, without full eye contact, without question…they see it, they know it, they honor it and the door to the man cave opens wide.

Over the years, there have been several boys in our lives who never seem to notice CJ’s autism, or if they do, they just don’t care. I guess if you discount lack of conversation, lack of eye contact, hyperfocus on one thing at a time while excluding everything else, side by side parallel activity and the need to raid the refrigerator every 30 minutes, for a boy there aren’t really any “issues” with CJ.

CJ has never really wanted to play with Legos or action figures.  But somehow these boys have gotten him to participate many times.  I am always confused when this happens. The boys have all been considerably younger than him, but I’ve realized that CJ is being patient with them while they are being patient with him. Everyone wins. They are having Man Moments.  Somehow, the Man Factor can trump autism every now and then.

We were at the beach with close family friends not long ago when one boy got CJ to build a sandcastle with him…for over an hour.  He directed CJ to go and get water and told him where to dump it.  They built and built and I kept watching, waiting, and thinking that CJ would have had enough any moment or want to leave five minutes later like he usually does.  But he was was fine and he kept on being fine, which meant we got to hang out and have a normal beach day. Later that night, looking out of the window of our condo, CJ was concerned to see someone digging on the beach.  He wanted to make sure they were not wrecking his “castle”.  I asked if he had had fun building it.  Instead of the usual “yeah” or “fine,” I got a big “YES!”

He wanted to keep talking about it, too. That day, CJ was just one of the boys.

Thanks Zachary!

Shave and a Haircut…plus Teeth

angry toothbrushRecently, I was cutting CJ’s hair and giving him a shave, and it suddenly occurred to me that this was one more weird thing in the strange little world that is our Normal.

CJ has sensory integration issues.  A few years ago, I would have put that phrase in quotes.  Now, I won’t bother, as more and more people have become aware of what that is and that many children struggle with these peculiar sets of disconnected perceptions.  Many people now know of the kid who can’t bear the top seam of a sock across his toes, or the wind from a fan blowing across face or legs, etc.  Even the corporate world has gotten wise in a few cases.  T-shirt manufacturers have started making shirts with printed tags instead of sewn-in tags.  (This is great for the kid who would otherwise pitch a tag-induced fit and proceed to claw his shirt off in the middle of church, but not so great for moms everywhere trying to read the washing instructions in the tattered stamp of a well-worn Angry Birds XXL.)

Everyone has worn a scratchy shirt they couldn’t wait to get home and take off.  Most will wait until they get home to actually disrobe, however.  Everyone has had someone yank on their hair too hard.  “Ow!” or “Excuse me, not so hard!” usually stops the offender and life goes on.

Not if you have sensory issues.  A scratchy tag or a pull on the hair can produce an instant “fight or flight” response and you can find yourself running after your child with autism in the middle of a church sermon or struggling to put his clothes back on in the aisle at Walmart.  On a really bad day, you may find the entire contents of your garage scattered across five or six of the neighbors’ yards while the police walk up your driveway with professional smiles on.

Haircuts.  Tooth brushing.  We take them for granted.  Now…imagine that getting a haircut is actually physically painful.  Imagine that brushing your teeth can actually hurt.

Welcome to CJ’s world.

When CJ was very young, we had a neighbor who was a hairdresser.  She would cut his hair with scissors while he was in a swing or in his high chair.  It worked.  But as he got older, it wasn’t as realistic.  For a little while, we had someone who would come to our house.  Then I tried taking him to professional places a few times.  One visit ended with me pinning him to the floor in the middle of the salon while the stylist attempted to finish.  I can’t describe to you the end result but it was one-of-a-kind.  Later, we had a neighbor who cut her boys’ hair and she would do CJ’s as well.  For some reason, with her he tolerated the clippers in short doses even though the buzzing would drive him crazy if anyone else tried.  I didn’t question it and thought of it as a gift from the Haircutting Gods.  When she moved, I was once again at a loss.  Then CJ told me that he wanted me to cut his hair.


I do NOT cut hair.  No, no no no no.  I knit, I craft, I cook, I bake and I’ve even been known to laminate stuff.  Hair?  Okay, french braids…I’m all over that.  Pony tails and head bands…sure.  But actually cutting?  We did not own clippers.  I had no idea what to do.  Just…no.

But…the alternatives were a child who looked like a refugee, plus pointed, disapproving stares in public, and a monthly wrestling match at Super Cuts (if they’d still let us in the door), or…clippers.  So I bought a set and learned.  Never let it be said I can’t be moved by the twin motivators of public embarrassment and saving money.

At first, I needed something to practice on, and I can honestly say that this was the only time I have ever wished we had a dog.

Here’s what I now know:  if you cut on a #1, it lasts longer.  If you do a #1 all over, it is less noticeable if you screw it up.  CJ has curly hair and mistakes are hidden better that way.  We are all about the #1 cut at our house.  Some cuts go pretty well.  Some cuts do not.  He does NOT sit still.  Therefore, giving CJ a haircut can be something like shearing a sheep.  Grab, wrestle, grab some more, twist, throw a leg over if necessary, ignore the loud complaining and avoid actual bloodshed.  We have had a few interesting results.  Luckily, hair grows back, though his grows a little too fast for my taste.

Sensory issues don’t end with hair, however.  There’s the matter of oral hygiene, a daily torment for both the child with autism and the parent with a child with autism.  In CJ’s world, a toothbrush is a weapon and Mom is a marauding dental demon.

When he was little, I would pull his comforter up to his shoulders with his arms under it and pin him down with my knees on his shoulders.  When he screamed, it was my chance to jam the toothbrush in and start brushing.  I was big, he was small, and I was tired of chasing him around the house each day.  You’d have thought I was wielding a chainsaw instead of a Colgate-laden toothbrush.  Of course, as far as CJ was concerned, it was about the same thing.

That was SO much fun.


Now, thanks to the miracle of years of occupational therapy, he has learned to tolerate much more these days.  Brushing we can do, but he still cannot get his teeth cleaned at the dentist.  He has to be put under general anesthesia to have any dental work done.  Insurance doesn’t like that.  I don’t like it.  CJ doesn’t like it.  I don’t even think the dentist likes it.  Certainly my wallet doesn’t like it.  But there is an amazing organization called Grotto that will pay for dental work for persons with developmental disabilities.  They covered all of our out of pocket expenses more than once, and CJ has managed to keep all his teeth so far.

Except for his wisdom teeth, which had to come out last year.  He did really well.  He has an amazing ability to heal ridiculously quickly.  Like, superhero/vampire quickly.  That works well for us, as the prospect of a 17 year old, 200 lb teenager with autism running around or trying to eat with bloody holes in his jaws is enough to make me hide in my locked bathroom with a Kindle and a week’s supply of food.

My new least favorite sensory overload activity is shaving.  CJ is nearly 18.  There’s more hair now, and the bearded Victorian look hasn’t come back in vogue yet.  (I keep hoping)

Shaving involves razors.  Razors are sharp.  Picture me, CJ and a razor and use your imagination.  Go electric, you say?  Ah, electric razors work, but only so well (the closer the shave, the longer we can go to the next shave, you see) and they vibrate…so you see where this is going, and we are back to the sensory issue.  Shaving a moving target is even more interesting than cutting the hair of a moving target…and you can’t go a month or two in between.

Luckily, so far, CJ has only been nicked a few times.  Most have been minor and I take full credit for my new, deft shaving skills.  But once it was my fault and it was on his lip.  Anyone ever get a cut on their lip?  It bleeds like you’ve sliced an artery.  And it does not stop bleeding.  I know they say that “head wounds bleed,” but they didn’t say for how long, or what you can do with it while it’s happening.  Together, CJ and I have discovered that if you flail around and carry on like a wounded dragon, you can get blood on your shirt, your towels, your bedding, other people, the cat, and anything in the general vicinity.  If anything suspicious ever happens in my house and they bring in one of those ultra violet lights they show on crime shows to look for blood, I’ll be put away for 20 years with no hope for parole.  Clearly, they’ll say, there was a murder in my kitchen, and they’ll start digging up my backyard.

Luckily, I have witnesses to what actually happened…my daughter, who is underage, and the cat, who isn’t talking.