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Watching Plays through the Filter of Autism . . .

19 Jul

Most of you who know our family well know my story first hand.

About ten years ago, we took Joey, our son with autism, to a high school musical–West Side Story–at Tallwood High near here. He would have been eleven or twelve. Our young friends from church, the Davises, went with us.

We enjoyed a great performance by the young actors. Joey seemed to enjoy it as well.

At least until the end. I looked over at him as we were getting ready to leave our seats and saw him crying inconsolably.

Since Joey is not usually a crier, I was alarmed. I went over and asked him what was wrong.

Joey asked me a question in return, “How are they going to do the play again tomorrow night with all those people dead?”

It was like an arrow through my heart. I had never thought to tell Joey in advance that the people who died in the play were only playacting their deaths.

Poor guy! He didn’t know. A wave of sadness washed over me, too.

Autism is so inscrutable. Just when you think a person understands things in a normal way, something like this happens . . .

So it is that last night, when we went to Regent University to see the outdoor Shakespeare play (Julius Caesar), I was very happy to note our son sitting on a blanket in the front row, taking the deaths of the emperor and various other combatants in stride!

In fact, since he knew one of the castmembers and it was an all female cast (college students), he was visibly entranced by the loveliness before him! Typical 22-year-old guy!

He did ask his friend afterwards whether her dagger was real–he seemed to be relieved when she let him feel for himself that it was rubber.

In any case, he knew that no one really died–that the fight scenes were staged.

Progress!

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Sleeping in the Breezes!

14 Jul

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Last night Noel and I slept in the breezes. Our son chickened out and slept downstairs, till we could get the air conditioning fixed this morning, but Noel and I just opened our almost ceiling-to-floor windows and slept in the breezes. Things were pretty still till about 4 AM, but nevertheless we stayed comfortable in our room, despite the temperature in the hallway outside our door creeping up to 84 degrees F.

With the advent of air conditioning, we so seldom sleep in the breezes anymore. When we lived in Germany in the late 1990’s, our non-air conditioned apartment was above a bakery and a butcher shop (both sources of intense heat) so we left our windows open on three sides of the building all summer long! They were not screened either (no mosquitoes in Germany).

We even once went camping near Pisa, Italy in a pup tent (at U.S. Army Camp Darby), with some incredibly refreshing breezes every night except one when it was so still we pulled our sleeping bags out under the trees. Stifling!

Fun memories of fun times.

In more recent days, our son and I spent some vacation time over the summer with my parents at their lake cottage (since sold). We slept on a futon in their screened porch (this was when my son was still a little guy) and very much enjoyed sleeping in the breezes (is there any better way to do that than in a screened porch???).

Then, three years ago, my brother and sister-in-law built a screened porch on to their house and our son got to christen it by being the first person to sleep there overnight. What an enviable position he was in. He especially liked being able to awaken every morning as the sun was rising and see the horses across the street hanging over their fence, ready for breakfast. Lovely!

We did *not* get to sleep in the breezes in June when we stayed in St. Ignace, with our hotel balcony overlooking Lake Huron, as the Michigan Upper Peninsula mosquitoes were big as birds and twice as tenacious that month! How I longed to leave our sliding screen door open to the breezes, but it was not to be.

We all love breezes and probably most of us love sleeping in them. But it is such a rare occurrence in modern times . . .

When People with OCD Won’t Let Grudges Go . . . (OCD #6)

7 Jan

People with OCD can be drama queens . . . but so can the rest of us.

People with OCD can have trouble letting grudges go . . . but so can the rest of us.

This is where OCD starts to cross into “normal” behavior and make us a smidge uncomfortable.  

Do lots of us have a smattering of OCD?  I think so.

From watching my son with new eyes this Christmas vacation as he is home after four and a half months at college, I am pretty sure that he finds it difficult to exist with a low adrenaline level.  So he “thrill seeks” as they say.

This would make him a “drama queen” in the parlance.

I am actually pretty fortunate that he does that, not by way of alcohol, drugs, or sex addiction, but by way of living in his own head.  Only that is painful in another way . . .

Far as I can tell, he comes up with his grudges against people out of thin air.  He will describe something that someone at the college or associated with the college has done that he feels is an affront to his dignity and . . . I just won’t see it.  

Or it will seem as though it comes from a parallel universe he has set up, with different rules for behavior.  People will have no idea that they have offended him because they won’t know the rules in his parallel universe.  It is as though he wrote a script for a play and treats other people as actors in his play who got their lines wrong . . .

He has a thing for honorifics.  Whom he should call “Mr.” “Ms.” or “Miss,” as opposed to those whom he addresses by first name.  And this part of his parallel universe has driven several powerful grudges he has developed at the college.  

If I thought that addressing the honorifics issue and defining it specifically for everyone in his world would actually help him cease being a drama queen, I would speak with his school’s administration about it.  But I am fairly certain that, even if they got the honorifics sorted out with Joey, he would have a new “drama queen issue du jour” by tomorrow.  It’s what he does.  

I don’t know how to get him to stop holding on to an “issue du jour” any more than I know how to get him to “reconcile” with people against whom he holds a grudge for reasons totally invisible to them.  

I pray that our brainstorming will help us with this part of OCD, too.

And . . . maybe in the process we will find some relief for supposedly normal Christians who develop grudges against others and say that they cannot find a way to let them go.  

It’s worth a try.  I have known many people stuck in hatred they said they didn’t even wish to carry.  I know it is not pleasant to carry bitterness and vitriol, even for a little while.

Maybe we can find help for us all.  

 

When People With OCD Feel Compelled to Interrupt (OCD #5)

6 Jan

A couple of days ago I wrote about when people with OCD overshare.  I threw the issue open on my Facebook page and discovered that many parents deal with not knowing what to do in the situation.  Not too many of us have found coping mechanisms that work (other than waiting till our child is old enough and responsible enough to be at home alone, then just leaving when they start that behavior . . . and not answering when they dial the cellphone!!!).  

This is never meant to be an “us vs. them” forum.  No one asks to be born with OCD.  They are not the enemy.  I am coming out of the closet on this issue in order that we might encourage and be encouraged.  Our children with OCD also need to be encouraged . . . We will work together to help them!

I am also convinced that people with autism/OCD will ultimately solve the riddles of autism/OCD, so we must continue to involve them in the conversations.  

Notice that I mentioned that the people who have thus far dialogued about OCD and oversharing have all been parents.  To me, that is telling because, especially when children with OCD/autism are young, parents may find themselves isolated, as the only people who interact with their child on a regular basis (except for teachers and others forced by the law to interact with them).  There is a reason for that.  Well, more than one reason, but let me throw this one right out there because it is another elephant in the room . . .

Many people will not voluntarily interact with a person with OCD.  Because of the fact that they get going on a session of sharing and don’t stop till they have overshared, many people find them odd and off-putting.  And sometimes people with OCD can actually cross a line into criminal oversharing (sharing sexual fantasies that have no part in normal human interaction and may actually be illegal, depending on the age of the person who is being forced to listen).    

It is totally understandable that people who want to keep their head straight would flee at the sight of someone who overshares like that.  The idea is not to build a world where oversharing is tolerated.  It is to help our children with OCD learn how to not do this.  The goal is to teach them where the line is drawn, then create in them a strong desire to not go over that line, regardless of what their OCD is telling them to do.  

A related issue that has come up a lot in our chats on Facebook is the actual topic of this post (sorry for the long sidebar discussion!).

What do we do when our child with OCD constantly interrupts our every conversation or activity?  I throw this one out there as one on which we have made some progress in my son’s 21 years but not as much as I need us to have made.  

I have actually lost some friends over this one, or had friends remain close to me after we “agreed to disagree” about how much control I had in the situation.  I can remember being told to “get a grip and make him stop interrupting you every time you are on the phone.”  I can also remember hearing, “Okay, now we have just had the usual interruption of our phone conversation.  I knew it was coming–I just did not know when it would happen.”  And, sadly, I agreed with that friend.  I also knew the interruption was coming at some point . . .

With a “normal” child, consistent consequences would eventually stop this from happening, right?  So I must not have been imposing consistent consequences, right?  So the thinking goes . . .

And in a world that had consistent rules that always governed human behavior, that would be true.  Only this is not that world.

I tried two things.  I tried ignoring my child as he interrupted.  That did not work.  He would only ratchet up his volume, higher and higher, until I could not hear my conversation. Remember Glenn Close saying in “Fatal Attraction” the words “I will not be ignored”? Any ideas why I call that film “Fatal Obsession”? She was only an outlaw version of a person with OCD, believing that people around her should be paying attention to her.  For some reason that I can’t explain, to ignore my son for even ten minutes when he was young seemed to totally negate his personhood.  

The other thing I tried was consequences after the fact.  Of course, these were invisible to the friends on the phone or in a social setting with me, who saw me regularly stop my conversation with them to listen to my son’s litany of non-emergency observations.  And, no matter how many hours my son spent in his room as a consequence of his interruptions (oddly, we would mostly have silence in the house then, as he totally understood the need to “do his penance” for his earlier actions), he would not outgrow his interruptions, as one normally expects young children to do.    

What is working better now that he has the fine muscle control to write is to tell him to journal his observations and save them for later. This is not a foolproof method, but both his college instructors and I have noticed it does help his behavior to improve somewhat.  He can spill his compulsions onto paper, confident that a parent or teacher will go over them with him later. Note: Make sure you do make time to communicate with your child with OCD later. The idea of this post is not to teach any of us how to totally ignore our child and the things he finds important. If you are seeking to do that, I encourage you that you need to change, too.

I also have learned to signal to him that I am involved in something like writing by wearing my headset, sometimes even if the music is not on!!!  Yes, I sometimes have to remove it to listen to something he just has to say right this minute, but he has vastly improved in understanding that the headset means I am trying to follow one of my own thoughts to a logical conclusion without interruption.  There were years I could never do that at all!!!

There is much I do not know and, as always, I stand ready to heed instruction from those who have found other things that work or that work better than my own coping mechanisms.  

We need to have this conversation.

When People With OCD Insist on Saying Everything that Comes to their Mind! (OCD #4)

5 Jan

This is my fourth post this week on life with our son’s OCD (hey, maybe I have OCD, too!).  

Something he just said to me tonight astonished me.  I have often wondered why he will not self-censor, even when he knows he will have consequences for some of the mean, hurtful things he says.  Turns out he . . . thinks it is lying if he does not say everything that comes to his mind!  

Wow, that is enlightening about OCD, isn’t it?  Not particularly helpful in coping, but enlightening. 

I can think of numerous times I have seen supposedly normal adults say similar things.

For example, just yesterday a veterinarian friend of mine posted a picture of herself on Facebook, taken while she was stroking a dolphin.  This was a bucket list item for my friend, an almost holy moment for which she had waited her entire life.  Yet one of her “friends” was unable to refrain from posting her disgust that the dolphin was kept in captivity.  

Really?  We can justify timing it so that we share our convictions which differ with those of a friend at the moment in that friend’s life when we can most deflate her and/or publicly humiliate her with our pronouncements?  And we feel very self-righteous as we do this?

Yet, I am almost certain there was OCD involved there, a compulsion to speak that this woman could seemingly not overrule.  

Another friend had just dropped her daughter at college almost a two-day drive from here.  As she posted about it on Facebook, obviously missing her daughter and needing comfort, another “friend” went on a rant about her own time at that particular college, stating that the only thing she ever found positive there was meeting her husband.

Really?  You have to say that now?

If that is OCD, no wonder it is hard for people with OCD to make and keep friends.  It seems as though they constantly choose the OCD over the friends.  There is no contest between them, apparently.  

Yet, of course, there is more at play here than meets the eye.  It is just a question of how we can show compassion without letting someone run us over constantly with a verbal steamroller.  That would not help anyone.

A practical example is a cashier at my local grocery store.  She visibly turned her nose up at a package of shrimp steamed in Old Bay seasoning that I brought to her line one day.  She then actually double-bagged her hands in order to not touch the package as she rang it up.  At first, I thought she had sneered at me and began to wonder what I might have done.  When she put the bags on her hands, I recognized the OCD in play and asked about her reaction.  She readily admitted to having a gag reflex with shrimp.  

Now . . . how do you have a career in a grocery store if you visibly turn up your nose every time a customer buys shrimp?  But more importantly, how do you have any career anywhere if your OCD is so disabling that you have big red flags all around you as people see you trying to do your job and stalling out while you double bag your hands? 

I have no answers, but only questions.  Questions worthy of lots of research and reading.

My son’s social worker/counselor once told me that Sigmund Freud had done a great disservice to mankind by telling us that things get better for us psychologically if we talk about them. He introduced “talk therapy” and the human race has not shut up since, saying some vastly inappropriate things that should better be left unsaid.  

It does help to talk about many things, but the social worker was referring to some of her clients who had broken the law, crossing lines sexually.  And they seemed to believe that their obsessions and compulsions would get better if they talked about them, if they described them to her.  Not wanting to take a mental mudbath, she told them that no human being needed to be on the receiving end of such dreadful confidences.  She said it was unfortunate that they felt they needed to talk through them because no amount of money would compel her, nor any other counselor, to be on the listening end of what they wished to say . . . 

She made a stand that families dealing with OCD need to make.  Even when the topic is milder than sexuality, OCD pushes people to “overshare” and drives other people away.  

I remind my son of that regularly–that I don’t need to know every thought that comes to his mind and that, in fact, it is cruel to inflict many of his negative thoughts on me as I try to stay motivated to help him go the distance in life.  

There is balance to be found somewhere . . . and I will find it one day, with God’s help.   

When People With OCD Don’t Learn From Experience . . . (OCD #3)

3 Jan

This is my third post on OCD this week.  Having our son with OCD home from college is teaching me many things about myself, some of them pretty ugly. 

I get really, really nervous having him home, now that I have grown used to a more peaceful, more organized, less erratic homefront.  Noel and I have our oddities, but there are far, far fewer difficult moments to navigate when our son is at college, mainly because two quirky people are less labor intensive than three, on a purely mathematical basis.  

But also, out-of-control OCD is its own entity, almost like having a fourth person in the home.  

OCD navigates a path that is predictable in its unpredictability.  This path almost never consists in going in a straight line towards an objective.  It almost never even provides any assurance at all that you ever will reach that objective, regardless of path taken toward it.

I am a far, far less relaxed person when our son is home and I believe my husband is, too.  I don’t like that about us and I certainly don’t like admitting it, but there it is.  

We live almost holding our breath, waiting for the next moment of difficulty, never knowing when it will come or what it will involve, but always certain that it will arrive.  

We almost live in a constant stage of siege, or at least a state of shellshock or PTSD.  

But OCD is like that.  It is cruel and relentless to the people in its path.  I am sure our son would choose to be rid of it if he could.  It is not something he requested and it does not change our love for him nor our determination to help him.  

And my respect for the people who help him navigate his world at college has increased exponentially this vacation, as I have been reminded of what they have been up against these past four and a half months.  Our son has made progress!  And I know it has been earned at great expense to all involved! 

That said, and knowing that I homeschooled more than ten years of our son’s primary education, you can probably see why it is very important to me to stay in touch with other people whom I teach, both in Sunday school and informally at church, Bible study, and online. 

If I don’t get feedback from others, I despair of ever being a successful teacher, after spending most of my life doing just that (even my 27 years in the Navy).  It is easy to forget past results and to begin to feel that I have never successfully taught anyone anything.   

You see, the fact that you can repeat the same piece of information about hygiene, or about a chore around the house, or about an English sentence, or about a math problem to a person with autism/OCD only to go back later and see in his eyes that he doesn’t remember ever receiving any instruction in that area can destroy one’s confidence and determination as a teacher.  Especially when you have taught that same fact/process dozens of times in the past and the instruction still seems to have been for nought.  

That is one reason I am so excited about the hardwon progress our son is making at college. Some things I have taught him many, many times in the past are finally kicking in, under the instruction of others.  Some are not.

But the fact is that we are not going to give up, even if some lessons are never learned.  

Right now we are battling a perceptual issue in which our son believes his dignity and the dignity of the disabled world was slighted.  Whether this actually happened or not is irrelevant–our son perceives that it did and he can’t let go of his perception, no matter how much I try to logic him into a different way of looking at things.  He will agree with me intellectually, then, thirty minutes later, he is back to perseverating on the issue as though we had never talked.  And we have talked, fifty or seventy-five times at a minimum this vacation . . . 

We aren’t giving up.  But I am going to write about this, too, for others are in the same place and there is a richness in pooled resources.  If I speak out, we can all start to speak out.  We can learn techniques that work.  We can encourage each others in areas where we just can’t seem to find relief from the OCD of our loved ones.

We owe it to all of us, especially to those loved ones with OCD! 

Is OCD the Elephant in the Room? (OCD #2)

1 Jan

A friend jokingly messaged me that, by posting on my son’s OCD journey yesterday, I had turned and pointed out the elephant in the room of evangelical Christianity.  

Fair enough.  After all, I called my blog “Iconobaptist”.  That should call up historical thoughts of iconoclasts breaking treasured images in the churches during the middle ages.  Not everything that we hold close as sacred actually is . . .

I am going to say that we can’t help people with disabilities/mental illness/disability of the mind (or whatever else we may term it) if we can’t accurately label what they are undergoing.  

It was easy enough for me to speak out emphatically against the first counselor who recommended to me that I could probably rid my son of autism if I just spanked him more.  I took the point that our son had to be held accountable for his behavior, like anyone else, but the implication that autism could be caused by bad discipline and cured by good discipline was staggeringly ignorant and I said so at the time!

Since then, however, I have noted the tendency in certain quarters to just treat my son as invisible and to not acknowledge our struggles with autism/OCD at all, much less trivialize them. I think this comes from somebody not being able to square his theology with the existence of mental disabilities.  Or at least some folks can’t find simplistic answers in their theology to paste over my son and others who are like him.  And thank God for that.  

Even though the Bible’s theology is simple enough for a mentally retarded person to understand it and be converted, God does not boil down to a simple formula! His answer for life’s trials is not simplistic explanations of them, but rather a promise to always be with us, till the end of the earth and till the end of time.

That is my very great comfort and my only hope.  

If we give people anything less than that, we give them less than the gospel and send them into potential despair.  

If our gospel only gives hope to people who are pretty good that God can help them become a little bit better, then it is no gospel at all.

If our gospel is anything, it is everything. It is hope for the parent whose child faces OCD or autism or both, or compulsive shoplifting or habitual lying or drug addiction or sexual compulsions or . . . 

We are in a fallen world.  The only people who have the luxury of holding a simplistic theology that denies God’s power over all sin and all brokenness all of the time are people who either have not faced life-dominating struggles yet or who have faced them and decided that God could not help them with them, then buried them deep underground.  These folks, sadly, spend their lives denying their own brokenness, lest it break through and remind them of the inadequacy they perceive in God.  

No, God is not inadequate.  If you have perceived Him as such, you have not gotten deep enough into Him to see that He is infinite and never runs out of resources, even in the midst of seemingly endless troubles and sorrow.  

I don’t know many answers in regards to my son’s OCD right now.  But I do know that God does. And I know God and know I can hold on.  Even if I can’t . . . He can hold on to me.  

My son, my husband and I are eternally secure in Him.  And that is worth all the wealth of the world, right there.  

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