Saturday, August 31, 2019

Morning Clapping

I have a seventeen year old son who wakes up happy on most mornings.  How's THAT for counting your blessings?  This is not to say that he's happy all the time.  When he's unhappy, you'll know it because he feels free to cry, yell and throw things.  But the kid loves to be alive most mornings.

For example, today is Saturday and, as we did not have anything going on in the morning, I slept in past our usual early morning family wake up time.  The first thing that I hear is the sound of jubilant clapping.  Joshua is drawing some of his favorite things on his magnadoodle toy (such as hairdryers and showerheads), putting the magnetic pen down and then clapping.  He can do this for hours.

Eventually he comes out to the kitchen and starts rummaging around for something to eat.  Without supervision his greatest interest, of course, is to find cookies.  Josh's sisters have been on a baking kick for quite a while now so he knows that they often hide containers full of baked goodies in various places in the kitchen, ostensibly to keep him from finding and eating them.  But, though he may have intellectual disability, he's not stupid so he can usually find any hidden sweets or baked goods.  Given further unsupervised time, he will eat the whole thing, leaving prodigious amounts of crumbs on the floor for our dog to clean up.

Alex even put a "baby proofing" clip on one cabinet in an attempt to keep Josh from accessing it but he figured out how to work it pretty quickly.  Finally, we ended up having to buy a plastic "lock box" to keep chips and granola bars in so that we could have some secure location in the kitchen.  Josh has not figured out how to open this yet but the problem is that the rest of us often forget to lock it up so Josh knows to check it first when he's hankering for a chocolate chip breakfast bar.

Hearing Josh in the kitchen is what finally got me out of bed.  I offered to make him some toast and he grinned broadly.

"Want butter on it," he said.

Josh also really enjoys what we call "frozen yogurt".  This is the leftovers of homemade fruit smoothies frozen into ice cube trays.  He won't eat it in liquid form but once frozen, he loves it.  He treats each cube like a little delectable piece of luxury, nibbling first on the edges then taking slightly larger bites, smiling as he does.

The house is really quiet this morning as Josh's sisters are away on a youth retreat.  I am listening to my son making happy noises while eating his breakfast.  Every once in a while, he will take a break from his voracious eating and express his joy through a few seconds of vigorous clapping.  I know that he might just be seeking sensory input.  But sometimes I imagine that Josh is giving thanks to God in his own way for his life.  And in my mind, I see God smiling back, very pleased at His son.

Monday, May 27, 2019

Two Words: Retainer and Toilet

"Mommmmmm.  Where's my . . ."  I hear it a thousand times a day.  It's uttered at the beginning, middle, and sometimes near the end of searches for lost items.  Wallets, homework, permission slips, hairbrushes, special rocks which I never knew that they had, they all have a way of hiding themselves in the corners and crevices of our house.  Tonight, it was her retainer.  Somehow, it was assumed that I would know where it was.  I did not.

"Oh . . . my . . . gosh.  Mommmmmmm!  Josh threw it into the toilet!!"

Josh sat at the dining table eating his toast with neither guilt nor amusement.

"Josh, did you throw your sister's retainer in the toilet?"


"What do you need to say?"

"Thank you."

"No Josh.  Sorry."


What do you think?  Is he innocent?  Does he know what he is doing or no?  

In the face of something that Josh has done wrong, it is never clear whether he is aware of his transgression or not.  Usually, I am too preoccupied by my own (often triggered, distracting, unhelpful) response to really be able to assess whether Josh is experiencing remorse, guilt, or defensiveness.  What I am wondering these days is this:  Does Josh understand that he does things that are wrong?  Does he know that he is a sinner? Or is he "an innocent"?  In biblical language, does he not have the "knowledge of good and evil"?  

As a parent, I am aware that part of how children grow in their conscience is that parent teach them and reinforce that reality by giving them consequences for their actions.  But how does one punish a kid who responds like this?  I can't remember now if I gave him a consequence in this situation.  We were too busy freaking out and trying to figure out if we could save the retainer.  

Miraculously, my daughter was frustrated but not angry.

"Why aren't you angry, Hope?"

"I don't know if Josh knows what he's doing or not.  Maybe he does.  I don't know."  She laid on my bed writhing with tension, amusement, aggravation and a drop of love.

Tuesday, September 25, 2018

A Fable about a Table

**Friends, this post is longer than my average post.  Please give yourself a few extra minutes to read.  To help you, I've put in more than the average number of photos.  Thanks for engaging with my life and my thoughts!  

My husband tells me that his parents bought this table as a part of a big home redecorating project in the 70's.  That would explain how ugly the table was.  The legs to this table always made me think of furniture that might be in King Arthur's court; heavy, ornate and . . . medieval.  But it was also sturdy and free so we've had it in our dining room ever since Alex's dad passed away.  It is the only dining table that my kids had ever known.

Despite all of the effort that we put into rearranging so that they could have desks in their rooms, my girls do their homework almost exclusively on the dining table.  As soon as I come into the house I plop my computer bag and my purse onto a chair at the table.  Groceries are sorted at this table.  Almost all of our meals have been eaten at this table.  Many guests have been hosted.  Conflicts have been resolved.  Serious conversations have been had.  Many prayers have been prayed at this table.  Our dining table is, in many ways, the heart or the hearth of our family home.

Alex has always taken care of this table as a precious artifact from his family history.  When we have to move the table, it must be done with two people so that it can be lifted not dragged.  Expanding the table by adding additional leaves to it must be done with great care and attention lest it be jostled too much and things get out of joint.  I never knew if this was because the table was so important to him or because he's just a really meticulous dude.  It might be both.

For a long time we had these custom made cushiony cover thingies on the table at all times.  I don't know why.  They came with the table so we kept them on.  And because they were ugly, we always had a table cloth on the table.  And because we had kids, the table cloth was always getting disgustingly gross so we washed the tablecloths almost every day.

Two years ago I asked myself why we were putting so much effort into protecting a table that was almost 50 years old and far from my ideal table.  I made a big change to our lifestyle and decided that we would let our table be naked, come what may.

Well, what came was that one day, while his mom was watering plants in the backyard, Josh took a ball point pen and carved a significant number of shower heads, hairdryers and fans into the table top where he sat to have an after school snack.   Here are some pictures of his "designs".

My first thought was that my husband was going to have a cow.  My second thought was that the table top was already pretty old and worn.  I posted some of these pictures on Facebook and a friend suggested that I simply refinish it.  Another friend even suggested a specific place nearby who might do a great job.  But given the busyness of my life and my tremendous hostility to taking on household projects, I knew that this would never happen.  I just internally prepared myself to live the rest of my life with a dining table with some artwork on it.  Maybe it would just be a conversation piece.  Or we just never let any non-family member sit where Josh usually sits.  I contemplated returning to table cloths.

Alex did have a cow, but just a little one.  He had a calf.  He was upset but quickly submitted to the chaotic power of Josh.  We have an autistic child.  Whaddya gonna do?  Fight to have a semblance of order in our lives?  I think not.

I'm not sure how it happened but somehow my husband and a good friend of his were chatting about what happened to the table.  The friend happened to be a designer and inventor who knew how to work with wood.  And he happened to have a power sander.  I kept coming home from work to see them working on the table with great gusto.  I think they were actually having fun.  Alex was really enjoying learning a new skill, something that he always wanted to know how to do but never had the time or bandwidth.

This is a picture of them and the table before the final varnish.  It was an amazing transformation and resurrection.  I couldn't believe it.  It was a gorgeous color of reddish brown; shiny, gleaming, almost radiating a loving warmth to our home.

Here is a pic of the final work.  Beautiful, isn't it?

How I wish the story ended there but, alas, it does not because two nights ago, the girls had left a permanent marker on the other end of the table from where Josh sits.  As I was preparing his pills, in a split second Josh took the black permanent marker and did this.

I turned around to see him holding the marker in his hand.

"Josh, what are you doing?!!!"  I yelled.

"Josh, what are you doing?"  he replied, calmly, eating a tomato.  If he sensed my emotion, he gave no indication.  It occurred to me that even our dog knows when he is in trouble.  Luther knows when to avert his eyes and get out of the way when I find that he's ripped up a stuffed animal or has peed on the carpet.  But my son acted like it was no big deal, like he was the one who knew some peaceful, deep wisdom that I could not yet fathom.  I just stood in the kitchen with my mouth open, silent, fuming and flummoxed.  Our beautiful, refinished table, was ruined once again.  After a few minutes of silence Josh said to me, "Want more toast".  Sigh.

Years ago, a wise mentor once taught us that we have to remember that the many things that we work to build in our lives are like sandcastles.  We work hard to build something and we want them to be beautiful, excellent, impactful, and lasting.  But in the end, like sand castles, the things we build are ultimately washed away.  Organizations, churches, ministries, institutions, programs, careers, wonderful as they may be, they all have their ends, often sooner than we expect.  Even expensive dining tables don't last forever.  None of the things in my house will last forever.  Even my house will not last forever.  From a Christian perspective, the only things that lasts forever are people and God (and maybe animals, I'm not sure about that one yet).

A few weeks ago while we were on vacation at the beach, we ran into a pair of brothers who were hard at work on a super-duper sand castle.  They had roped off a section of the beach and were building a replica of an actual European castle that they had researched.  Both were engineers who grew up at the beach making sand creations in their childhood. They spent quality  time together once a year by spending a whole day making something beautiful out of sand.  This project took them over 13 hours.  They arrived with their many tools and buckets before dawn and we helped them pack everything up using our flashlights on our phones.  As we chatted at the end of the day, I asked them why they did this and wasn't it a bummer that their creation would be washed away by the next morning?  Exhausted but happy, they said that it's all part of the process.  They did not expect it to last forever.  That was not the point.  Their wives let them take a whole Saturday away from their families not to build the sandcastle but to invest in their relationship as brothers.

I've been thinking about this sandcastle ever since that day.  The beautiful, valuable things in our lives are but a reflection of that which is ultimately lasting beauty.  We will enjoy our lives, our relationships and even our things better if we accept that and just give ourselves to the process of life in this temporal world.

Tuesday, July 3, 2018

Minor Miracles and Other Things that Keep You Going

Being fifteen has meant that Josh is sometimes aggressive.  When he wants something but can't have it, he might grab, scratch and even hit people around him.  One time when we were in our van on our way home from a family vacation trip to SeaWorld, he suddenly got really frustrated and pulled a big handful of hair from his sleeping sister who was in the row in front of him.   That was a huge bummer.  It broke a lot of trust with that sister and she, understandably, declared that she was going to take a break from helping Josh.  The other sister, also understandably, defended him, declaring that he couldn't help it because he gets frustrated just like all of us but he doesn't have the tools to manage and express his emotions. 

We've employed various strategies and behavior plans to deal with this unfortunate but somewhat expected pattern given Josh's age.  He's a teenager.  His brain is going through a normal adolescent growth process which includes hormonal and adrenaline surges.

One of the things that we do is to leave his presence and let him know that he doesn't get to be around us if he's being demanding or agitated.  Josh's wonderful respite provider, K, knew to do this the other day when Josh was becoming aggressively demanding. Apparently, Josh was yelling and grabbing K's arm.  K firmly told him that he was going to have to be in his room by himself for a while and that K was going to be in the living room.  K said that Josh yelled and made unhappy noises for a few minutes and then was quiet for about 15 minutes.

Josh came out to the living room and silently sat down next to K and then did something that shocked our experienced respite provider.  Josh said, "I'm sorry."

"It was a miracle!" K said as he recounted the experience to me later.  "You know, my colleagues and I talk about how we stay motivated for our work by the little miracles that we experience every once in a while.  This was one of them."

It's so true.  I know many adults who don't seem to know how to utter those words in the course of their lives.  How did Josh access those words and place them in a socially appropriate context?  Was he just repeating a phrase that he heard in a song or on the radio?  Maybe.  But it touched K's heart nevertheless.

As a Christian, I believe that being sorry and acknowledging one's faults/ shortcomings/ fallenness/ sins is a crucial part of opening one's heart to grace.  Yet I also know how difficult it is to speak those works of acknowledging wrong.  Sometimes my husband has to wait a good long time to receive an apology from me in a situation where we both know that I was wrong.

I know that apologizing not something that is modeled by many "adults" in this world but somehow, we all know that repentance is what makes healing and relationships possible.  Sometimes, an apology is a miracle; a sign of some amount of self-knowledge and a desire to heal.  It is a sign of grace and hope.  It is the touch of God.  What a beautiful thing to see that, in that moment with K, Josh had been given the gift of being able to say, "I'm sorry".

I wonder what our world would be like if people were able to say, "I'm sorry" just a little bit more each day.  I wonder how my life would be changed if I was just a little bit freer to say, "I'm sorry".

Friday, February 16, 2018

Swearing, Profanity, and Cursing

Today, as Josh was making himself some toast he dropped the butter knife onto the floor and immediately exclaimed, "Sh*t!"  I looked up with surprise in time to hear him say it again three times with vehemence, "Sh*t, sh*t, sh*t!"

After surprise, came amusement.  After amusement, came pride.  My son was using an interjection in a contextually appropriate way!  Way to go, buddy!

As you may know, if you have read any of my other blog posts, Josh is not someone who has a lot going on in the way of expressing language.  In fact, his spontaneous (non-prompted) language falls generally in two categories; echolalia (random echoing of things that he has heard before without appropriate meaning or contextualization) and expressing simple needs or desires ("I want toast").

To have Josh use profanity appropriately with some amount of affect was kind of awesome!  At the same time, I wondered where exactly Josh picked this up.  Was it from us?  From school? From kids on the bus?  I wish I could say that I knew for sure that he must have had this modeled for him outside of our home but, alas, I cannot.  

In our early parenting years, when blow out diapers, interrupted baby naps, and finding people spreading poop on walls were a regular part of our lives, I noticed that Josh was much more likely to echo swear words that came out of my mouth than anything else.  Perhaps this was because they were accompanied with clear and passionate emotion.  

We've been talking a lot about swearing with our (6th grade) girls recently.  We've wondered together why swearing is supposedly bad.  I hate it when people just tell you not to do something without having a reason so I've been thinking about it a bit myself;  Do you refrain from swearing just because it makes you a bad person?  Why do we have the sense that we should not swear?  True, the Bible says that we shouldn't swear but I think that means swearing as in "making oaths" or taking the Lord's name in vain.  Ok, so we don't say, "I swear to God..." or use Jesus' name in irreverent ways. But the specific question that we have sought to answer is "What exactly is wrong with using profanity?  

In her book,  Swearing Is Good For You: The Amazing Science of Bad Language, Emma Byrne writes that "Swearing, it turns out, is an incredibly useful part of our linguistic repertoire. Not only has some form of swearing existed since the earliest humans began to communicate, but it has been shown to reduce physical pain, help stroke victims recover their language, and encourage people to work together as a team."

Even the apostle Paul uses "coarse language" in Philippians 3: 8 when he says, "What is more, I consider everything a loss because of the surpassing worth of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them garbage, that I may gain Christ."  That word which is here translated "garbage" is more accurately "the refuse of animals", "dung" or "poop".

All of these things may be true but my experience tells me that peppering one's language with profanity hurts relationships, especially if one is swearing at someone.  Swearing usually adds a jolt of emotion (usually negative) to a conversation or interaction that is draining, uncomfortable or painful to the listener in most situations.  There is a degrading and disrespecting quality to swearing at someone. In conflict, profanity usually amps things up rather than calming things down which is not conducive to making peace or bringing resolution.  Once you've said, "F--- you" to someone, you really can't ever unsay that.

Now that they are in middle school, my girls are discovering that there is plenty of negativity, anger and meanness in this world.  Using profanity just adds to it.  For Christians, Ephesians 4:29 advises,"Let no evil talk come out of your mouths, but only what is useful for building up, as there is need, so that your words may give grace to those who hear."  Also, the practice of self control is important to the life of someone who is wanting to emulate the God of love.  According to James 1:26 "If you think you are being religious, but can't control your tongue, you are fooling yourself, and everything you do is useless".  Another reason all this matters is that the words we use say a lot about what is in our heads. Philippians 4:8 says, "Whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things". As we think about what's right and pure, cuss words are not helpful.

Words are a very powerful part of creating the reality in which we live as human beings.  In general, we ought to try to make our words be edifying, positive, and gracious, for our own sake and for the sake of people who are hearing our words.

But, at this point, if my son wants to express himself by swearing when he drops a knife, I'm still going to smile.  

What are your thoughts about swearing?  Swearing and parenting?  Swearing and being a parent of a child with special needs?  Swearing and the middle school experience?  Swearing in a household with kids?  

Monday, June 5, 2017

Clean, Dirty

Do you ever feel like the day can just turn on a dime?  One minute you are having a lovely, laughter-fulled time and the next minute things can go so very, very wrong so very, very quickly.

Today, Hope and I went to Pet Food Express to give a bath to Luna, a friend's golden retriever who is staying with us for the summer.  Since Hope was a toddler, we've been going into this place to watch dogs being bathed here at our neighborhood pet food store.  I could drink almost a half of a cup of coffee while I allowed Hope and her sister to stand around and watch as dog owners cleansed their canine family members in neat little stalls with all sorts of hoses and nozzles.  And because there were things that looked like shower heads there, Josh often enjoyed being there as well.  It was a fascinating look into the exotic world of dog ownership.  

Today was the first time for both of us that we got to do it for ourselves.  We gladly paid our money and got a shiny, golden token.  A very friendly staff person gave us an introduction to the marvelous dog shower system and then we invited our slightly smelly dog to go into the wash area.  

Luna was not thrilled but, because she is the world's most obedient golden retriever, she obliged.  You have no idea how good it feels to rub a dog's golden hair with almond scented dog shampoo-- really rubbing it in.  It's like a sensory meditation. We took turns giving her the free treats that they had at the store.  We had aprons on but we got wet anyways.  We were laughing.  It was awesome.  

Luna even sat very still as we dried her now lovely smelling fur.  Hope and I felt good about how well we had accomplished this task.  We sauntered out of the store refreshed and energized.  I paused on the sidewalk while Luna politely smelled a few butts of dogs who were headed into the stores.  Hope was considering purchasing a dog cookie for Luna.  I noticed what a beautiful day it was.  The day was sunny but not too hot.  I could smell the coffee from the Peets coffee shop a few stores down.  What a beautiful scent is coffee, that wonderful elixer.  The scent was smooth, nutty and surprisingly strong.  It was like the smell of an old friend.  I couldn't help but to smile.  

I clicked my key to open the side door to my van, which was parked directly in front of the pet food store in the disabled parking spot.  Josh had been unhappy in the store so I had brought him back to the car, rolled the windows down and left him there to occupy himself with a cup of ice.  As the door opened, I realized why the smell of coffee was so strong.  Coffee grounds had been sprinkled all over the back of my van.  It was in the cup holder, on the floor, on the ceiling and on the seat.  It was all over Josh and the bag had been tossed onto the floor below him.  

In that moment, I realized that Josh must have reached up to the front seat and had found the bag of ground coffee that I had purchased at Peets just before we went to bathe Luna.  It must have looked or felt like sand to him because he had poured it all over himself and my van.  My son loves to pour things.  At parks, Josh loves to watch sand pouring out of his hands.  He could do it for hours.  It appeared as if he had also attempted to dry-shampoo his hair with it. 

I took a deep breath and tried to not cry.  Why is it that you can turn a quick corner and then have chaos whack you across the face with no warning?  I guess because life is just like that, a diverse array of scenes and emotions that remind us that we have very little control. 

Ecclesiastes Chapter 3 says, "For everything there is a season, and a time for every matter under heaven:
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to throw away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to throw away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.

Apparently, there are times to be clean and times to be dirty.  And the thing about these different times is that we usually don't get to determine them.  They come upon us and what we can do is to be in it and respond well. Sometimes these different types of times happen within the same hour.  Sometimes we wait for a long time for the season to keep silence to end and for the season to speak to start.  Time and the seasons are in God's hands.  We have very little power to determine these things.  

It was a small victory that I did not yell at anyone as I drove my van with a wet girl, a clean dog and a dirty boy home.  For the second time that afternoon, I stuck Josh in the bathtub and tried to explain to him that we do not pour coffee grounds on ourselves.  He simply said back to me echolalically, "We do not pour coffee grounds on ourselves" and went back to happily pouring water from a cup into the bathtub with utter delight.  

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?