Happy as a Clam

 

When we first arrived at our friends' beach house I was already a mess.  I was afraid that our unruly, chaotic mop of a dog would pee in their house.  I kept thinking about all of the things which I had forgotten to pack.  It was hot.  I was already tired.  Of course, the biggest worry, as always, was about how Josh would do.  This was a place where we had never stayed before and Josh is always stressed by new places.  

We always let Josh stay in the car as long as possible while the rest of us unpack the car and get situated in any new place.  Alex brought all of Josh's accoutrements into the room which he would get to stay in all by himself: his stereo, his Ipad, his magnadoodle toy.  When there was nothing left to unpack I went out to the van to coax Josh to come in.  I can't remember if I had to bribe him with a snack . . . probably yes.  

I feel bad saying this but, with our family, going on any trip is a big fat risk.  We're definitely had our share of family trips that have spectacularly NOT gone well.  For the past twelve years, we have had the most success vacationing at our dear friends' lake cabin in the mountains.  Josh gets to stay in the basement family room where it's quiet and he gets his own space.  He loves it and he knows what to expect.  If he hears us mentioning "the lake cabin" Josh will start saying "wanna go to the lake cabin" over and over again.  But this year our friends are in the midst of a remodeling project so it wasn't an option.  Also, we happen to be in the middle of a pandemic this summer so we assumed that we would just stay put.  Just when being in our house was going to drive us fully bonkers, some other friends reached out asking if we might want to stay at their beach place about an hour away.  Uh, yeah!

Today is our third day here and we finally felt ready to take the risk to take Josh down the mini-hike down to the beach.  The last time we took Josh to the beach, he didn't like it and he wanted to go home right away, which was a bummer for the rest of us.  But the beauty of this place was just so ridiculous that we had to try again.  Hope went down earlier than the rest of us and she texted me, "MOM! THERE ARE DOLPHINS!"  I looked out of the main bedroom's window and, sure enough, I could see a pod of dolphins frolicking in the water below not far from the shore.  

That was it.  I summoned the energy to pack up all of our beach stuff and drag Josh down the path and three sets of very steep steps down to the beach.  He was scared but he held tight to the guard rail and my t-shirt and carefully headed down.  

It was pretty much love at first sight.  Josh plopped himself down in the wet sand and, for the next two hours, delighted in the sensory input of the cool waves hitting his body.  He was like a little brown lighthouse of joy, waving his arms in the air, laughing loudly and saying some of his favorite words;  "feelings!", "abortion!", "cocaine!", "train!".  Several people walked by and gave us a smile.  

Alex and I took turns closely supervising him in the water while admiring how well the girls had taken to boogie boarding.  We each got some time to ourselves under the umbrella to read as well.  

To top it all off, I quickly found that if I dug into the wet sand a little bit with my feet, it was not too hard to find clams!  Be still my immigrant heart!  Not only was this day going so well but was I going to have FREE seafood to cook for dinner as well?  This is crazy!  

Ok.  Not everything in a given day has to be perfect in order for a day to be wonderful.  It turned out that there is a quarantine on shellfish in this area because of an abundance of a certain marine bio-toxin so we couldn't eat the clams.  Also, one of my supposedly independent teens elected to not apply sunscreen prior to swimming in the ocean for hours so some amount of wailing about crispy skin ensued.  But we all agreed that the day had been very good and we were filled with gladness and gratitude.  

Abortion, Cocaine and Such

I think I might have solved a long standing mystery in our household.  As I mentioned in my previous blog post, Josh has a habit of repeatedly speaking out a word or phrase which he takes a liking to.  We are guessing that he doesn't speak the word for what it means to most of us but he likes how it sounds.  Sometimes they're nonsense words that he's made up like "recordian".  Oh how he loves to say that.  I'll walk into his room and he'll be saying, "recordian" and just savoring the sound of it with a sweet smile it like he's had some fine wine or gourmet chocolate or something.

One of his favorite real words is "abortion".  He seriously says it all the time. A new word which Josh is fond of is "cocaine".  It's both annoying and disturbing to have him say these words over and over and over again.  They're not lovely words.  I don't like that he says them and I don't know where he got them.

Starting about a year ago, he'll say a word or phrase aloud and then he will keep saying it until we say it back to him.  Maybe it's his autistic way of being relational or interactive but it sure doesn't feel very relational from the neuro-typical side. And if we don't say it back to him, he'll keep saying it with more volume and intensity until one of us breaks down and finally says the word just to get him to shut up, especially if we're in a car together.

"Abortion? Abortion?  ABORTION!"

"Yeah, abortion, Josh"

"Hey, I thought we weren't going to say it back to him!"

"Yeah, we need to break him of this pattern.  It's so annoying!"

"I just can't stand it anymore.  I just need him to stop."

"Yeah, I know."

(3 minutes pass)

"Cocaine?"

You get the picture.  Anyways, today I walked into his room where he was listening to the radio and caught the tail end of someone sharing a testimony on the Christian radio station.  The person was sharing about how he used to be a major cocaine user until Jesus came into his life and now he's sober.  Oh. My. Goodness.  That's it.  Josh has been picking up these words from CHRISTIAN FREAKING RADIO!  I bet that's where he got the word "abortion" as well!  Ok now.  How can I fix is little CD player to not be able to play Christian radio?  And no rap stations either.  That might be where he's getting all his swear words.

Five Blessings and a Bummer During Quarantine

Like most parents, Alex and I are struggling to create some sort of routine for our kids during this time of "sheltering in place" during the 2020 coronavirus pandemic.  I think that all of us are disoriented and stressed.  But do you know who's not disoriented and stressed?  My 17 year old son, Joshua.  He has no idea why we stopped going to school but he seems to be quite cool with it.  School ended a week ago and our household is just barely starting to achieve some semblance of a new structure.

Mostly, Josh gets to hang out in his room listening to music and drawing which he's happy to do.  He takes long baths and goes for at least one walk around the neighborhood every day.  Sometimes, we drag him around to the grocery store or to get pet food.  As long as he has some snacks, he's very chill about running errands.

Today, I was struck again about what a blessing Joshua is.  Here are five things that I have enjoyed about Josh and one thing that I didn't enjoy:

1) Josh has become a good walking buddy.  When he arrives at a street corner, his years of orientation and mobility training kicks in. Josh says quietly to himself, "Look left, look right.  Safe to cross." Then he takes my arm and crosses the street.  It's the sweetest thing ever!

2)  Josh wakes up happy and hungry.  Whereas my other teens have a proclivity to sleep till 11am or noon, Josh wakes up between 7-7:30 am everyday.  I hear him rummaging around in the kitchen and fear of him pouring my sugar canister all over the floor wakes me up in a jiffy.  Once up I decide to make myself a cup of coffee and then I am rewarded with a quiet couple of hours.  Josh has a couple of pieces of toast and some frozen smoothie cubes then he retires to his own room.

3)   Josh is unbelievably happy in the bathtub.  He loves the sensory input of water and our babysitter recently bought him this bath toy which he finds to be a never ending delight.  ("It's like a shower head!!") I am not kidding, Josh can take a three hour bath and make happy noises the whole time.

4)  Josh comprehends that if he wants to use my phone for 5 minutes to watch a YouTube video he has to work for it. 5 minutes with my phone equals at least three chores.  He's actually pretty good at unloading our dishwasher, although if left unsupervised, he can leave all the glasses upside down on the edge of the sink.  Still, I find it helpful to have him contribute in this way and he never complains.  Other chores include taking out the trash and recycling, watering the plants in the front or back yard, brushing his teeth (not a chore but still works in the same way) or putting away clean clothes.

5)  Josh still loves to sniff Mama's hair.  Actually, he sniffs Hope's hair as well.  I think he really has a thing for long black hair.  Maybe blond hair doesn't smell as nice?  Alex has no hair on his head so he doesn't get to participate in this.  One time Hope had a friend over who had the most beautiful long black hair.  The girls were watching a movie when out of the corner of my eye I saw Josh headed over to sniff her hair.  It was like everything went into slow motion, Josh going in for a sniff, me trying to head it off saying, "Nooooooooooooooooo".  Disaster was averted but the friend seemed a little confused.  Anyways, sniffing people's hair is not the most prosocial behavior but it's one of the only ways that Josh initiates connection and affection.  And it makes him happy, which makes me happy.

The Bummer -- Yesterday Josh and I went for a walk to the "Little Free Library" down the street.  For those of you who have not seen these, they are little shelves or cupboards that people put up on their front yards where people can leave a book or take a book.  It tends to be a low key place where people sometimes congregate.  Three people from the same household were there already and as we approached, smiling Josh said in a loud and delighted voice, "F*cker!" Dude, I have no idea where he got that! Seriously, I don't think that I've heard that word in my house ever. (Other not nice words but not that particular one.)  I do know that Josh will pick up a word that he hears and rolls it around in his mind and mouth.  Last month his favorite word, unfortunately, was "abortion".  Oh how he loved to say that word.  Sometimes he'll keep saying it until we say it back to him.  It's the only way to get him to stop.  Well, all I know is that I haven't had a good mortification like that in a while.

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.

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?"

"Yes"

"What do you need to say?"

"Thank you."

"No Josh.  Sorry."

"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.

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.

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".