The Specter of Residential

Some things we just don't want to hear.
Photo by Ambro

Last week, we had a meeting with the Wrap team and E's ABA therapist.  We went over the current plan and schedule and discussed what was working and what wasn't.  Mostly what wasn't.

We've had a few scary instances with E. lately.  These were relayed and discussed.  Each ABA session so far has been one big non-stop meltdown.  It's exhausting.  Appointments are becoming non-stop meltdowns.  We're all tired of walking on eggshells around E.  Sometimes his meltdowns are unpredictable, but usually we know what will set him off.  The reality, though, is that he has expectations to meet, including chores, and life is not one big party where you get to do whatever you want.  Just this afternoon, he threw a hairbrush at my head because I reminded him that there was a load of his laundry that needed to be put away.

Residential treatment was brought up at the meeting for the first time as something that could be a real possibility.  Even though I know that it's necessary for some kids, the idea is terrifying to me.  If it gets so bad that E. has to go into residential treatment, I feel like I've failed.  How many kids come back from residential with real improvement?  It seems like the ones I know of are a lost cause.  I feel like if I send E. there, I'll be washing my hands of him.  I fear the judgment:  "You can't even take care of your own child."  "You sent him away to be someone else's problem."  I would certainly feel that way, so why shouldn't everyone else be thinking it too, even if they are too polite to say it to me?

I don't know how to make this better.  I don't know how to make residential okay.

The New Friend

Photo by twobee

We just recently moved to a new complex on the other side of town.  While E. usually has some challenges making friends, he had a few kids to pal around with at the old complex and was worried about whether he was going to find anyone to play with at our new home.

A few days after the official move, E. asked if he could go out to see if he could find some kids to play with.  I didn't see a problem with that, so I told him to check back in an hour.  When his hour was up, he came back bursting with excitement over his new friend.

I was happy to hear it, and for the rest of the day, all I heard about was how cool Luke was and what Luke was into and what they had done together.  I was looking forward to meeting Luke, this child who was so quickly accepting of E. and all his quirks.

A couple days later, E. came back with Luke's dad's phone number and a request that Luke come over and play.  I was impressed that he had thought to get a phone number and called Luke's dad, ready to meet E.'s new best friend.

It turns out that Luke is not even five years old yet.  E. will be twelve in just a couple weeks.  I was disheartened and felt like I should have known.  E. doesn't get along well with kids his own age and typically prefers the company of kids who are much older or younger.  It's a pretty stereotypical behavior for kids with HFA, and it sometimes hurts to see E. behaving in "textbook" fashion.

I explained the situation to Luke's dad, who also didn't understand why E. would want to play with someone so much younger.  He was understanding and even walked Luke over so that we could meet.  Luke and E. played together well, even including little sister in their games (Luke is, after all, much closer to her in age).  Occasionally E. was disappointed when Luke was unable to follow along with some games and wasn't interested in looking at items through microscopes, but they seemed to have fun.

Watching them together, I completely understand why E. would seek out a friend like Luke.  To Luke, E. is the cool, older kid who takes the time to show him neat things.  He admires E., and he doesn't see the differences the way a child his own age (or older) would.

The Care of Alphabet Soup Parents

Don't give up on us, okay?
Image by tungphoto

One of the most difficult aspects of being the parent of an alphabet soup child is handling the inevitable isolation and the loss of those moments that define you as being something other than an alphabet soup parent.  Friends may recede as we no longer have the finances to support an active social life, let alone the time.  We may have to give up our jobs if we cannot find a way to work them around our schedule that has become filled with appointments and unscheduled interruptions.  It begins to feel like our lives are fully consumed by our kids and their needs.

Often, these changes can cause misunderstandings and hurt feelings among your friends and family.  Why do you no longer want to spend time together?  What's with all the sudden cancellations and dropped plans?  How come you aren't seen at family gatherings?

It can be difficult to explain, but I will try.

1.  Finding a babysitter has become nearly impossible.  We are trying to be polite and not impose.  We know that not every gathering is "family friendly," and we are attempting to respect that.
2.  Because one parent is no longer working, and thanks to mounting medical costs, our financial situation may no longer allow for "frivolous" activities.  We can't justify a dinner out when the power bill is due.
3.  Even family friendly events may pose a challenge.  Our children are often unpredictable.  We don't know when an outburst is coming, or whether it's going to be a shutdown or a meltdown.  Or we know perfectly well that an outing is likely to be overstimulating for our child and a meltdown is likely.  Rather than expose everyone to that situation, we simply stay at home.  
4.  We may simply be exhausted.  We are tired and stressed out and know that we are unlikely to be pleasant to be around.

You may feel angry about the situation or even slighted.  You might even think of your friend as rude or uncaring.  Please remember:  We have a lot on our plates.  We are trying to do the best thing for our family and for our child.

Here's how you can help:

• Read up on the situation your friend is coping with.  Understanding what they're going through is the first step toward accepting.  One excellent selection is How Can I Help?  A Friend's and Relative's Guide to Supporting the Family with Autism by Ann Palmer.  
• Check in with them once in a while.  Silence makes coping more difficult.  Your friend may feel abandoned and will be less likely to come out at all.
• Talk openly about the situation. It's not a taboo topic, and your friend will feel better knowing there is someone who will listen without judgment.  
• If you know the child and feel competent doing so, offer to help with respite care.  Don't be vague -- offer a specific time and date.  
• Continue to extend invitations.  Even if your friend can't make it, the invitation is appreciated.  Be understanding of last minute cancellations.  Unpredictability is simply a part of life for alphabet soup parents.

Alphabet soup parents, what would you add to this list?  Friends and family of alphabet soup parents, what are your questions?  

I'm Tired and I Want to Lie Down

Image by Danilo Rizzuti

Soup of the Day:  PTSD

And not my child's.  Could I be diagnosed with PTSD?

According to this article about the stress levels of mothers of kids with autism, it's highly likely.

When I read the article, I guffawed at first.  Then I thought about it some more.  I thought about the incident that took place on Monday, when I found myself calling 911 because E. was so frighteningly out of control.  He was threatening to kill himself and was fighting tooth and nail to get past me to get into the kitchen and get a knife. I have bruises covering my arm.

I stayed calm throughout the majority of the ordeal (well, as calm as possible).  Once the police arrived and took hold of the situation, I sank onto the couch.  I felt my chest began to contract, I started breathing in gasps, and my hands were shaking uncontrollably as the adrenaline that had been flooding my body took hold.  I felt sick, like I was going to throw up.  Later that night, I was hit with major digestive issues.  According to a quick web search, my tummy troubles were the result of the major adrenaline dump that had occurred earlier in the day.

This is what severe stress looks like.  While not every day is that bad, every day is a struggle.  Every day has some kind of stress attached to it.  From little things like arguing over whether E. had cleaned himself properly to bigger issues like today's, when I was visited by maintenance.  It turns out that E. had been dumping the garbage out by the side of the building instead of in the dumpster.  Why?  It's actually a farther walk to the location where the dumping was happening than it is to the dumpster.  And of course the mess was spreading as birds and scavengers went through our garbage bags.  The guy who visited me was clearly pissed about it. I'm pissed too.  There goes my stress level.

Now I'm trying to work out an appropriate consequence (I'm thinking garbage pick-up this weekend).  I know that there's going to be a fight tonight when we confront him, and I feel sick -- preemptively.

The other part of the article that spoke to me was that mothers of children with autism are interrupted at least one day out of every four, compared to other moms, who are interrupted less than one day out of ten.  It's why I left my full-time job.  How can you keep up a job when you are constantly fielding phone calls from the school or child care?  I'll tell you -- you can't.  At least today I could just stop what I was doing and answer the door.  But trying to juggle constant messages from human resources, write-ups for missed work, the dread of knowing that you have to go speak to your manager because you have to leave for the second time that week...  Constant stress.

I have no solutions.  I try to take care of myself, but some days it has to take a backseat to dealing with all of E.'s crises.  Today is one of those days.  I feel like a mess, but I have too much work to do.  Writing in the blog is my self-care for the day.  I'm hoping to meet up with a friend later, but I may have to cancel, depending on how E. handles the revelation that he's been caught red-handed.

This is my life.  And then people wonder why I'm cranky.

Delving into "Serenity"

Photo by anankkml

I'm not going to go into details, but I was raised knowing the Serenity Prayer.  Not being a particularly religious person, I had about as much use for it as I did for the Lord's Prayer -- namely, it was something memorized and said by rote when everyone else started reciting it.  I never really gave much thought to the words and what they meant, but it stuck, lodged in my brain like the lyrics of some song from the '80s I probably should have forgotten long ago.

Today I was working on my weight loss "homework."  I was writing in my journal, noting the progress I had made.  It took some work, because I had neglected to do it the last couple of days.  I was feeling overwhelmed by life in general and the last thing I wanted to do was analyze it.  But the only way to ride is to get back on that damned horse when he throws you off, so I was determined to get back into the groove.  I thought about what had sent me into this last tailspin.  What was the emotion that I wanted so badly to escape from?

It wasn't too challenging to figure it out.  It was that feeling of complete and utter powerlessness that comes over me when I'm faced with E. and his seemingly insurmountable challenges.  I feel powerless in the face of Asperger's.  I feel powerless in the face of the school system that wants him to fail before he can begin to succeed.  I feel powerless about not having money to simply throw at the problem and make it go away.

There it was, my limiting belief.  "I am powerless."  Okay.  Now, to change it into an empowering belief.  And suddenly, there it was, in my head:  "Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."  I suddenly understood every word of that little mantra.  It meant something to me, today, in that moment, despite my previous lack of connection.  

The things I cannot change:

• E.'s condition(s)
• The system that the school is trapped in
• The cost of the programs I want
• E.'s behavior 
• E.'s reactions
• Other people's behavior
• Other people's reactions

The things I can:

• How I respond
• How I deal with the school
• The level of information I have
• The level of education I have
• The steps I can take to learn how to work within the system
• My own behavior

It's another tool in my arsenal.  It doesn't mean that there won't be any more bad days.  There will still be bad days.  There will still be times when I feel powerless in the face of the challenge.  There are times when I forget to use the tools that I have.  But every tool I add increases my chances of finding the right one for the occasion.