Saturday, January 14, 2017

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."


"Children are dying."


"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?

Tuesday, January 3, 2017

What I've Learned from Josh (A Guest Post from "Auntie Rachel")

I've known Josh almost since the day he was born. Susan and Alex lived upstairs from me and my roommate for Josh's first year of life. In light of his heath issues and my night owl tendencies, I had many middle of the night shifts feeding him very specific amounts since his body didn't give him appropriate signals regarding when to eat or the necessary amount. I don't know how much of it is because he was the son of my very good friends who had wanted him so badly and how much of it is because of that year of helping him to live, but I know that I've always loved Josh.

Yet it's tricky to know how to communicate that to Josh or how to have a meaningful relationship with him.

I no longer live in the same area as his family and, at best, I only get to see him twice a year. Generally, I'm good at figuring out how people work and how to build a relationship with them. With people who are important to me, I figure out how to care for them well, how to be a good friend to them, and how to help them know that they are loved.

I have no idea how to do that with Josh.

Some of that has to do with how little time I spend with Josh. Some of that has to do with how little time I spend around people with special needs, particularly autism. Some of that is just Josh and the ways that it can be difficult for anyone to fully figure out how to relate to him, communicate with him, or know what's going on for him.

Perfectionism is a struggle for me and it comes out in my relationships. I work at them. I'm thoughtful with people. I'll go over interactions to figure out what I would have liked to have done or said differently - sometimes intentionally, sometimes compulsively. The more that I care about the person, the more I work. And usually I can see the pay off for that work in strong relationships and people who feel cared for by me.

But with Josh, I don't even know what work would really look like. Despite all of my relational skills, I don't think that I could ever reach the place of feeling like I'm competent and confident at how to relate to him or how to communicate to him how much I love him.

I found myself thinking about Josh recently and aching a bit about how much I love him and how incapable I feel to really communicate that to him. But then God made me take pause. "Oh, Rachel. What's reality here?"

The last couple of times that I've visited Josh and his family, Josh has clearly wanted to spend time with me. The visit before last, it came up just a couple times. Josh likes to spend quite a bit of time by himself in his room. Most of the time others are not welcome. But he very specifically wanted me to hang out with him. "Sit, please." Josh is often polite while being rather insistent. So, I sat on the end of his bed while he drew or listened to his radio for a while. After a stretch of feeling like 'is this really doing something for him?' I got up and immediately received, "Sit, please." So, I sat.

Several months later on my most recent visit last spring, I was washing dishes on the first night and Josh came to get me and took my arm to pull me toward his room with 'Sit, please.' So we hung out. I played some ukulele for him, but I feel like it just gave me something to do. Josh just liked me being present. During the days that I was there he initiated with me so much that it stood out to the rest of the family as atypical Josh behavior. And it was often enough that there was no way to interpret it as random. We couldn't understand it, but it wasn't random. My last dinner with them, Josh was his usually quiet self while I chatted with his otherwise very talkative family. But when I got up to leave the table, there it was again. "Sit, please."

I don't know why Josh likes hanging out with me. Susan, Alex, and I have speculated about what it is about my personality or demeanor that he finds appealing. But in Josh's way, we're friends. And because I love him, that means a lot to me.

But more than that, my relationship with Josh is now a reminder that I don't have to have it all figured out in my friendships for them to become what I want them to be. 

I do think that it's good to work at relationships. They deserve and require that. But I'm never going to need to be reminded of that. I need to be reminded that my relationships aren't as dependent on my work and abilities as I think that they are. Josh is that reminder to me.

Sunday, July 17, 2016

Celebration for Wiping!

**Disclaimer.  This post is happy but clearly about issues of toileting.  If you are sensitive to talking about that kind of thing or if you are having lunch right now, you might want to skip this one.

Somebody say "hallelujah!"  Can I get an "amen"?  Gimme a hand clap!  Let's all whoop out loud for today my son took a poo and wiped himself all without any help from anyone.

I woke up this morning to his big boy body sneaking into our bed on my side.   A few minutes later, my husband went to the bathroom and discovered that Josh had already been there.

"Oh boy!"  Alex declared.  "Looks like someone had a poo."

This is bad news because for the past two years, Josh has been able to get himself to the bathroom to do his business but was not very amenable to wiping.  Therefore, if he went in the middle of the night, he would simply pull his pants up after pooping and go back to bed.  The result was usually not pretty.

"Is there toilet paper in the toilet?"  I asked.

"Yep, right on top."

I got up and took a look for myself, not completely believing that my husband had looked very carefully.

"Hmmm."  I thought.  "But how good of a job could he have done?"

I pulled the happy snuggler out of my bed and checked.  Actually, he had done a very good job.

Then it dawned on me.  Josh had gotten out of bed, taken himself for a nice morning poo, AND HAD WIPED --- all by himself! Today was the day!!

And there was no poo in his hair or on his clothes or on the walls.  There was no pee on the floor.  All of the toilet paper had made it into the toilet.  It had all been done correctly.  I'm not completely sure about the hand washing but I decided not to go crazy with my expectations.

Yes, he's almost fourteen but this is a day that I never thought would come.

We've been in potty training Josh for almost twelve years.  He started sitting on the little training potty at age 2.  Every step seemed to take a zillion times longer than for a typically developing child.  I remember putting night time diapers on him at age 9, worried that we would stop being able to find diapers in his size wondering, "What will we do when he is an adult?"

Josh just never seemed all that motivated.  There was no desire to be a "big boy" and to be like other kids.  He was fine just to go in his pants or bed.  He was happy to have us wipe him.

He's had accidents in every possible conceivable place: in the car, at the grocery store, at the bagel shop, in other people's homes, at church, and in the great outdoors.  He even went through a season when he would pee on electronics like DVD players, portable stereos and TVs.  Ah, what adventures we've had.  I've had moments of panic in so many different contexts as I've raised my little blessing.

How many hours have we spent working on this area?  With hope against hope, we kept trying.  We had to teach him by rote, by just doing certain things over and over and over and over and over and over and over and over and over again.  We taught him to wipe peanut butter off of his arm, then his leg just to teach him how to wipe and clean something.  We had him fold exactly 8 squares of toilet paper again and again because Josh preferred to get either two or a hundred squares at a time.  We worked on the fine motor part of wiping because, at first, it was more like spreading than wiping.  It turns out that wiping is more of a challenge than one would think when you are visually impaired, you have low muscle tone and you don't really care about things being clean.

I've had consultations from multiple autism specialists, a visual impairment specialist, several occupational therapists and a physical therapist.  I am guessing that we've had at least 15 college educated people plus a half dozen people with masters degrees working on the challenge of teaching my beloved boy to wipe his bottom.  We even went to one pediatric psychiatrist with an MD/PhD for a couple of consultations.  We paid him $300 an hour to basically show me how to make fancy charts.

Like an annoying, demanding relative who lives with you in your house, toilet training has always been with us. You just wake up and keep giving it attention every day, accepting that this is a part of your life.

But now, he's done it. My son wiped his own bum successfully all by himself.  I'm not sure if we are yet fully living in the promised land of full toileting independence but we've experienced the fruits of our determination today.   I'm proud and I'll blog it from the rooftops!  In my little special needs parenting world, today hope prevails.

Friday, May 27, 2016

Dead Hummingbird

Tough morning. Daddy is out of town. Mom forgot to set the alarm. We woke up just as Josh's bus was about to pull up at our house.  I tried to keep my voice mellow and subdued but I think I ended up sounding serious and intense.  "Girls, Mommy made a mistake and forgot to set the alarm.  I really, really need your help right now!"

The girls picked up on Mom's stressed out tone of voice and scrambled out of bed.  They were very impressive in this mini crisis getting themselves (and even helping Josh) to get ready. Someone got Josh a glass of water.  The other one gave him a very crispy piece of toast. Teeth were not brushed thoroughly and we all had crazy hair but we were only 5 minutes late heading out the door with breakfast in our hands. It was a miracle of morning productivity yet it was clear that we were all adrenalinized and on the brink of snapping at each other any minute if anything were to go wrong.

Do you know what gave me the most energy in the midst of this flurry of activity?  It was the fact that Josh smiled through the whole thing.  My son's super power is that he does not pick up on other people's emotions.  Yes, that's often a downside in social interactions but in moments like these, when negative or stressful emotions are swirling around, it can be so helpful.  Josh woke up happy and was blissfully clueless that others were not.  He was glad to be awake and no one was going to take that away from him.

Unfortunately, we opened the front door and found a dead hummingbird at our doorstep.  I think one of the girls might have even stepped on it's little dead wing as she went out. Weeping ensued. It was like a little handful of cuteness and beauty had been crushed right in front of us.  They demanded that we give it a proper burial right then and there. We three females all felt the spike of sad, negative energy in the moment.  Aya.  What to do?

"Girls, girls, please.  I am begging you.  Can we deal with this later?"  I gently placed the hummingbird's corpse in what I called a "special resting place" under a purple bush in my front  yard.

By some miracle, the girls were both able to choose to be redirected.  Josh was already in the car, munching on an apple and smiling broadly for some unknown reason.  At this point in my life it is such a beautiful thing that at least one of my children is pleasantly resistant to being infected by the negative energy or emotions of others.  He does not get pulled into the panic or anger or sadness of the people around him.  He is just where he is at.  I find that sort of wonderful.  

I want to be someone who can smile and remain happy even when people around me are not.  What is the secret to not getting sucked into other people's stress or negative emotions?  Short of having autism, my guess is that the answer is to become a person who is deeply rooted in peace.  I don't even know what that would look like but I want it.  I want to have a spiritual and emotional force field to the destructive and dark vibes that swirl all around me in my day.  

Sometimes life hands you a dead hummingbird on your front door on a day when you are already running late.  Some days are just like that.  The next time I have one of those days, I am going to picture my happy, apple eating, emotionally unfettered son and try to remember that I do not have to sink into heaviness and despair.  It is possible to be free and happy even on chaotic, dead hummingbird days.  

Wednesday, February 24, 2016

A Shared Joy is a Double Joy

Yesterday I took my kids through a drive-through car wash for the first time in their lives.  It was, to Josh, a revelation.  He was immediately deeply engaged by the experience, exuding a sense of awe that one might have when observing the Grand Canyon or the earth from space. The brushes going back and forth, the spray of the water, the squirting of the detergent, the vibrating rumblings of the machine that ensconced us, these things were absolutely enthralling to him.  

This blog is called "shower heads and hairdryers" because those have been two of Josh's absolute favorite things since he was very little.  Many autistic individuals have a special interest in unique things such as elevators, trains, or dial tones.  Showers have always been the zenith of interest for Josh.  He can spend a good part of a day drawing them.   One year for his birthday, we printed out dozens of images of shower heads and hairdryers and put them up all over the house.  It was better than a trip to Disneyland for my son.  

 As the carwash brushes whirled by spraying florets of water, I could hear Josh whisper with a voice of wonder, "shower head." 

"Yes, Josh" I said. "It's like we're in a shower head.  Like a car shower."

"Like a car shower," said Mr. Amazed.  "Like a car shower."  

For the next 10 minutes, Josh yapped happily about his experience, savoring the sounds of talking about what he had just seen.  

"Like a shower.  Like a brower.   Like a shower head.  Like a dower.  Is it like a zower?  Drower?  "

After a while, Josh's annoyed sisters coudn't tune him out.  "Josh, please stop."

But there was no stopping him.  Home boy was on a roll.  "Zower.  Like a shower.  Shower head. Brower.  Would you like a dower?  It's a car shower.  A car brower."  

"Girls, let him talk.  He's happy."  I said, taking in Josh's exuberance.  

Yes, Josh was very happy and he wanted to share it, in his own way.  And this filled me with joy, even though it was a little bit like being swallowed by a Dr. Seuss book.  My son was sharing about something.  He wanted us to share in something that he was experiencing. 

When I serve in our church's nursery, one of the things that tears my heart a little is watching little 9 month babies point to things.  Pointing is a sign of something very important in a child in terms of his or her neuro-social development.  That child is wanting to share about something with another person.  Pointing, eye contact, shared attention on another interesting object, these are things that naturally happen in a typically developing child, even at a very young age.  It is a critical building block of learning and connecting.  A child points to something then an adult says, "Yes, that's a train. It's Thomas the train.  And this is Percy.  Percy is green!" With a facial expression, tone of voice, and eye contact the child takes in the nuances of meaning.  The experience of sharing attention is a magical portal for learning.

Most autistic children have a very low impulse to have shared attention.  They are often content to experience things on their own, thus, their worlds tend to develop in ways that are not very connected to most people.  This was true of Josh.  I don't ever remember him pointing to things.  He rarely wanted to share his interest or joy in something that was interesting to him. Shared interest has been, to Josh, a very, very thin thread in his developmental life but it's there. 

Yet, in this moment, even in his ramblings, I could tell that Josh was trying to express to us that he had experienced something extraordinary: a shower in a car.  I longed to milk this moment of shared attention and shared joy for all that it was worth.  

This morning as I woke Josh up, I said to him, "We were in a car shower yesterday, huh, Josh?"  He smiled a little smile and said, "Car shower".  And I thought that there was a split second of eye contact as he said it.  

A professor once told me that a shared joy is a double joy.  And even though I need to be at work in a few minutes, I have to post about this moment because I want to double, triple, quadruple my joy.  My son had a moment of joy and, in his own way, he wanted to tell me about it!  It brings me such happiness to reflect on it, to relive the moment!  ZOWER!

May you have a moment of wonder today and may you have the grace-joy-synergy-energy to share about it.  

Tuesday, February 9, 2016

I'm Having a Very Good Life

One of my favorite movies in the world is a little known film called Mi Familia (or My Family).  I love it because it’s a beautiful snapshot of Los Angeles, a city that I deeply love, and about three generations of a Mexican family, a culture that I love.

I saw this movie when it first came out 21 years ago and since then, at least every couple of months I think about the final scene of the movie.  The matriarch and patriarch of the story, Jose and Maria, are sitting together in their golden years reminiscing about their past and they say, “God has been good to us, we've been very lucky, and our life it has been very...very good.” 

I remember being totally shocked by that scene because in their lives, Jose and Maria have endured many horrible, difficult things such as illegal deportation, the LAPD gunning down one son in front of another, several children going to jail, gang violence, the death of a daughter-in-law as she gave birth to a grandson, all kinds of racism, poverty, back-breaking work etc.  But somehow, near the end of their lives, they are grateful people.  They are grateful to God.  I remember thinking that it was some sort of miracle or parable --- to have a very difficult life but to be able to see it as good.  To have a glad and grateful heart even after having endured so much sadness and evil is shockingly striking.  The memory of this scene has been deeply planted in my mind.

I want to be like Jose and Maria. 

As someone on the journey of parenting a child with special needs, it is easy to see your life as less than good.  There are difficulties, isolation and so many things that you just can’t do.  I find myself wondering, “What is the next crisis that will come along?”, "Will I find poop in random places in my house?", "Do I have the strength today to battle with various systems that seem take a pound of flesh from me before giving me the meds that my son needs?"

It is still so easy to fall into comparison with other people, other families.  And then there is the future.  What will Josh do when he is booted from the school system?  Who will take care of Josh when we are no longer able to?  Will I ever not be parenting someone who functions as a toddler?  Anxiety, discontentment, bitterness:  these things offer themselves to me daily like shiny fruits from the forbidden tree in the middle of the garden of my life. 

But I am beginning to get a glimpse of what it might mean to be like Jose and Maria.  On some days, I look at my beautiful son and I find myself thinking about how lucky I am to get to be his mom.  I see him as the overwhelming gift that he is to me.  Through Josh I have learned compassion, servanthood, slowing down, being needy, waiting, the blessed state of being a dependent child.  I would not trade these lessons for anything.  I imagine myself, at the end of my life, thanking God and giving him unending praise for having the wisdom to give me a child like Josh for the sake of my own sanctification.  I picture God laughing that I could share His joy in the great gift of my son. 

As my mind stretches out to meditate on contentment, I remember a book that I read years ago called The Rare Jewel of Christian Contentment. This "rare jewel" of a book, written almost 400 years ago, addresses the basic problem of human discontent and suffering. True contentment, argues the author, is achieved by surrender to God.  I feel the hardness of my heart and the smallness of my brain whenever I approach this book.  But I also feel the warmth of the truth in it's contents and I am strangely attracted to it.  

I might be a complaining, entitled, cranky person tomorrow or even an hour from now but right now, I see and I submit to the reality that God knows what He is doing.  He loves me and wants more for me than I can even dare to imagine.  I am having a very, very good life.  

Wednesday, December 30, 2015

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.