Echolalia from God?

Echolalia is the "meaningless repetition of another person's spoken words as a symptom of psychiatric or developmental disorder".  Josh has been exhibiting echolalia since he began to learn how to talk.  We've spend a tremendous amount of time trying to teach Josh to respond to questions with an appropriate simple answer rather than by repeating the question.  For many years, if you asked him, "Do you want toast?"  He would always respond by saying, "Do you want toast?" right back at you.  With help from autism therapists, we learned to not give him what he wanted until he replied with a more appropriate response such as "Yes".  

Even after many, many years of training and intentional assistance, when Josh is tired or when he does not know what you are talking about, he will simply reply to a question with a repetition of a question.  A query such as "How was your day?" will likely solicit the response "How was your day?" because Josh does not know how to answer a question like that.

Sometimes when Josh is alone, I will hear him repeating things just because he wants to or maybe he likes the sound of a particular word or phrase.  Last month, he was in his room listening to the radio with his headphones on.  The quiet of our house was suddenly punctuated with Josh loudly and happily exclaiming "This year, give the gift of beauty!". Another day, I heard him say, "The season of shopping and shipping!" with a follow up of lots of clapping.

Recently, Josh was having his breakfast, while I listened to NPR on the radio and cleaned the kitchen.  As usual, Josh echoed some of the phrases that he heard on the newscast.  I don't know if this is just my imagination but it was strange to notice the specific phrases that he chose to echo.  

During a newscast about the besieged city of Aleppo in Syria, Josh repeated phrases like:

"Many wounded people trapped."

and 

"Children are dying."

and 

"What do they have to hope in?"

It felt like some sort of emotional editor or a a personal prayer highlighter of the news for me.  I was in the mode of semi-listening to the news while putting dishes away while planning the rest of day.  But after the third or fourth seemingly meaningful verbal statement by a kid who cannot understand the news, I began to wonder if it was possible for God to speak to me through echolalia.  

I stopped with the dishes, took a seat and waited for a minute.  Wondering if I should pray for Syria, interact with Josh or turn off the radio, I just sat with the moment of pause.  Josh also entered into the moment of pause.  It was a rich, five-second moment of shared attention; plump with wondering and waiting.  I felt like God had my attention for the first time all day.  Then my son stood up and did a little dance of waving his arms and head back and forth.  Then he went back to his room and shut the door like, "My work here is done."

Does God ever get your attention in surprising, unexpected ways?

A Rich Tangle of Emotions

Yesterday I dropped Josh off at his winter day camp at his autism therapy center.  We walked into the waiting room where kids were meeting up with their one on one therapists for the day.  As I took in the sights and sounds, I was inundated by a rich tangle of emotions all at once.  These are a few of them:

Empathy.  One tall, well dressed Asian dad with an ID card from a well known local high-tech company pleaded with his child.  His clearly autistic son, about 5 years old, was not happy about being transferred to his therapist for the day.  As the boy escalated into a full blown tantrum, I could feel the rising desperation of the father. "Please.  Please Jacob."  He begged his son.  "Please don't do this.  You'll be ok.  Mommy will pick you up soon.  Please, sweetie.  Daddy has to go to work.  Please."  Compassion cut through me like a hot knife through butter.  How many times have I experienced this very same "bad transition" moment?  I could almost read this man's mind.  He was probably thinking about what they could have, should have done to prep his son for the transition, knowing that it might not have mattered anyway.  He was already dreading the costs that they might have to pay in the evening if his son had a bad day at the program.  He was probably already late to work but couldn't wait to get there so he could feel like a normal person again with the possibility of experiencing competence and productivity.  I offered a knowing smile but stayed out of the way and said a quick, silent prayer.  

Pride.  The whole time while this was happening, my own son was choosing to behave with shocking maturity. He chose a spot on a couch as far away as possible from the upset child.  He stuck one finger in an ear then focused his attention on eating his apple.  Oh, how far we've come on the journey of auditory sensitivity.  There was a time when a situation like this could have resulted in hours of crying.  Now, Josh is clearly not happy or relaxed but he is dealing with it.  I'm filled with admiration for this kid who has had to work so hard to overcome so much. Over the past thirteen years, we have come so very, very, very far.

Anger.  I could see in an instant that the younger sibling of another autistic child was typically developing.  The three-ish year old girl had the intuitive sense that her brother was struggling and she knew to keep quiet and out of the way.  She contented herself with reading some of the books which were available in the waiting room yet ignored by all of the autistic kids.  She found a picture in a book that excited her and had an immediate impulse to share her discovery through pointing and eye contact.  I watched her and saw how her brain was a meteor of learning, making cognitive and social connections by the second.  I was gripped by the thought that it's so unfair that some kids get to have brains that almost seem to self-develop.  Other kids, like my son, have brains that are so slow that they never learn their ABCs.  Some kids are able to integrate the world around them and make growing sense of it.  To others, the world is a places of constant threats and chaos.  Why?  How is that fair?  It's not and sometimes it makes me so mad that I want to shake my fist at God.

A few minutes later I sat in my car, zombie like.  These and other emotions swirled in my head, preventing me from driving to work and moving on with my day.  How are you supposed to transition into being a centered, productive adult when moments like this assault you with such a barrage of emotions?  How can I walk into my day without wearing all of these feelings on my person like heavy jewelry?  

As I took a few slow breaths I sensed the ever-present invitation of Jesus:  "Give me all of your thoughts and emotions.  I will keep them safe."  

Safe. Oh, yes.  I closed my eyes and remembered the safety of the One who can handle every whirlwind.  Jesus, He is not overwhelmed, even when I am.  He always sees us with eyes of love, with attentive ears.  

One by one, I let go of these disparate feelings and laid them at His feet.  I felt my spine lighten as I shared my emotional load with the one who offers to yoke Himself with me.  

How do you walk through life when you face intense moments of varied emotions?  You must let the One who is your constant companion lead you. You accept that you are never alone and never left to carry even your momentary burdens by yourself.  

What if People Misunderstand My Son?

Sometimes I fear that, one day, Josh will do something that gets misunderstood as threatening and that people who are afraid of him will take harmful action.   Because of his disabilities, my son's behavior can seem suspicious and erratic if one doesn't understand what is going on with him.

There have been times when Josh has touched women inappropriately in public contexts, patting their butts or touching their breasts.  Usually this is just part of his flapping behavior, never something sexual.  Some people have been very understanding when they turn to see Josh and discern that he's developmentally disabled.  Some people have gotten very upset and have responded with great hostility.  Josh has picked up food at stores and has started eating it without paying.  He is twelve (and still very cute in my personal opinion) but he is already quite tall for a mostly Asian kid.  When he's wearing a big jacket or hoodie, he looks like a typical high schooler.   I wonder, at some point, are people going to interpret something that Josh does as threatening, dangerous or illegal?  And if that happens, will there be time for me or someone who is with Josh to interpret who Josh is and why he does things?  What if Josh happened to be alone?  Could he have a weird, random or intense encounter with police, a security guard or a neighborhood watch person? Could things go bad fast?

If someone told Josh to put his hands up in the air or to get down on the ground, he is not likely to comply because he wouldn't comprehend what was going on.  Josh does not understand what a police officer is.  He has no concept of legal or illegal.  He is not good about boundaries and social expectations.  Given recent events which have been in the news, such as the deaths of Eric Garner, Trayvon Martin and Michael Brown, I can't help but to play a dark scenario in my imagination where a tense situation leads to his injury, arrest or death.

In general, I still believe that police officers are men and women who are out for the good of the general public and I am very grateful for them. I hope and trust that most have been trained well enough to slow down and try to understand what is going on for people when things seem strange. Yet I cannot deny that somewhere deep inside me is a dark fear that is rooted in the reality that the world is not a safe or fair place, especially for young men of color.  My heart breaks because of this. Lord have mercy on us all.

Today I will lift up a special prayer for the mothers of all of the young men who have been the victims of violence.

"And a sword will pierce your own soul too."  Luke 2:35

Regulating Yourself

After three days of being with his volunteer "buddy" at a church conference, Josh was done.  One of the staff working the conference came to find me in the main meeting area in the middle of the session with a look of quiet desperation.  

"Uh, are you Josh's mom?  He's really unhappy."

I race walked to the area where Josh was sitting. His beloved magnadoodle had been thrown to the floor, earbuds were still sort of sticking out of one ear.  Josh was viciously scratching his eczema on his neck with one hand and then periodically hitting his head with the other hand.  He was wailing loudly and huge, wet tears were plopping off of his face onto his already food-stained shirt.

"Ok, buddy.  Mama's here.  Let's go for a walk."

I thanked the volunteer, who was mighty glad to return responsibility for this hysterical child to me.  Josh and I walked hand in hand to the parking lot, tears still dripping off of his face, where the evening sun was just starting to be low and orange.  After we did a few laps around the vast parking lot Josh seemed to be doing better.  When I turned on some worship music on my phone Josh started doing his happy circles; spinning round and round, flapping his hands, first smiling then laughing.  

Why do autistic people walk in circles?  Josh doesn't do this but a lot of other autistic kids like to jump-- over and over again.  Why?  The  best explanation I've heard is that spinning and jumping are examples of repetitive motor behaviors. When a child is spinning or jumping he/she is activating the vestibular system. The child may seek vestibular stimulation as a means to elicit “feel good” sensations and/or also to positively affect his/her arousal.  In other words, many children with autism seek sensory information or experiences from the environment (due to feeling under-stimulated). They may also use spinning and jumping as a way of regulating themselves (i.e.: when they are stressed, anxious, or overwhelmed). Spinning and jumping can help one feel regulated and “grounded.”

Watching Josh turn to spinning to calm himself down made me realize that it might not be as bad or strange of an idea as one might think.  To come to think of it, I need regulation now and then and maybe spinning is not as bad of a choice as yelling at one's family members or eating a whole bag of Tostitos.  

We all have our ways of getting regulated or grounded, don't we?  Some methods are more socially "normal" than others but they all are a sign that our minds, emotions and bodies get out of whack and we are trying to find a way out.  Sadly, some of our choices don't actually bring the restorative centeredness that we really need.  Sometimes disregulation leads to more disregulation and we just spiral into a very unhappy place-- like Josh was doing when he was crying, scratching and hitting himself.  

But with a little help from someone that we love and trust, we can find a different way, a new way to get centered and calm.  In the quiet of the parking lot with the vast, golden San Luis Obispo hills in the background, it occurred to me that Josh's spinning was like an autistic prayer.  It was Josh expressing that he was needy and not right in his own mind, heart and body.  It was a way for Josh to open himself up to joy, peace and, I think, his Creator. 

Tonight, the fruit of Josh's spinning was a smile and a calmer body.  After a while, he took my hand and was clearly ready to walk back into the church.  

Are there times where you could use a little help with your self-regulation?  What does centering prayer look like for you when you are overwhelmed?