Work is Good

 

The other day Josh's dad had left a basket of clean clothes in Josh's room for him to fold and put away later.  When Josh woke up, he saw the basket and was very, very, very motivated to complete that chore.  He said, "Wanna put the clothes away" over and over again.  Unfortunately, the bus was coming in 20 minutes so we did not have time to do anything other than to get dressed, brush teeth and eat some quick breakfast before he headed to school.  Still, Josh is not Mr. "aware of the time" and he was extremely perseverating on getting this task done.  I had almost gotten him to the kitchen when he slipped past me back to his room where he dumped the basket of clothes onto his bed to start working on them. I had to fight him pretty hard to keep him from folding all his clothes and putting them away right then and there.  Ok, yes, I had to promise to include a cookie with his breakfast but I was finally able to redirect.

So how many of you parents out there have to fight your young adults to NOT do their chores?  

Josh doesn't always want to do chores but it's a big part of what he is learning to do in his life.  I'm extremely proud of how much Josh has grown in his ability to do work.  As a part of his post-secondary education, Josh has been volunteering at Molly Stones (a little boutique grocery store in town), Ace Hardware and the Veteran's Administration.  At those places, he puts items on shelves, he breaks down boxes, he wipes tables and he makes coffee for people.  I never tire of hearing about the new skills that he is gaining with the help of his dedicated team of vocational education aides and teachers.  

It's not an easy thing to figure out how to help a kid like Josh to learn a new task.  One teacher make a whole binder full of photos breaking down each part of the process of making coffee into really simple steps which Josh can understand and practice again and again.  Apparently, on Wednesday mornings, Josh walks around campus taking drink orders from various staff members, making those drinks and then delivering them.  He charges $2 for each beverage.  He carries around a clipboard where people attach their money. This is incredible to me.  

With help and repetition, Josh is learning how to work.  He is contributing to his various communities in his own Joshy sort of ways.  I am struck by what a tremendous gift it is to be able to work.  Without it, Josh is relegated to a life of just being entertained or being bored.  How easy it is to think that Josh is someone who just needs to be taken care of.  How tempting it is to allow Josh to live a life where he doesn't have to do anything to contribute.  But Josh is being given the gift of being able to work, albeit in simple, modified ways. 

Working, contributing and producing are part of what makes human life meaningful and happy.  The biblical picture of the Garden of Eden had work in it; good, productive work. Genesis 2:15 states that "The Lord God took the man and put him in the Garden of Eden to work it and take care of it." It was only after the fall in the story of Genesis that things like inequality, greed, competition, poverty, futility, and forced labor came about. 

In our society, work is too often associated with our worth, our identity and the security of making money. Josh is free from those things.  Josh is never going to be a biomedical engineer or a clinical therapist but he is going to help keep places clean, running and organized.  He likes completing tasks. He brings caffeine into people's lives.  That's pretty good.  I'm so grateful for all of the people who have worked so hard to help to bring independent living skills and vocational education into my son's life.  

Thanksgiving Ham

Sometimes I just hate myself.  

Generally,  I don't have time to wade around in my insecurities.  I have three children, a dog and a congregation full of people to lead and care for.  I'm 55 years old and have had plenty of time for God to help me to get over myself.  I've come to accept that I am not a compilation of accomplishments, abilities and actions.  I'm a person who has been profoundly shaped and transformed by the grace that I have found through Jesus Christ.  

But then I have a day like today and I just have a jag of DESPISING my weaknesses, my peccadillos, the stupid things that I have a tendency to do.  Today is Thanksgiving and I feel like I had almost ruined it.  I have roasted at least 40-50 turkeys in my life. It's not a big deal.  I can totally do it; just pick a recipe and make it happen. 

The New York Times Cooking recipe said to roast the dry brined turkey for 30 minutes at the unusually high temperature of 450 degrees.  I'm guessing that the purpose of this is to do something like a sear to lock the juices in. Then I was instructed to turn the temperature to 350 degrees for the remainder of the time.  It really was an elegantly simple recipe, something that an experienced cook, such as myself, could do quite easily while managing teen aged sous chefs, a hungry special needs young adult who kept emerging from his room demanding food and various side dishes.  

The problem was that when I turned the temperature on my oven down to 350 degrees, I had forgotten to push START! What that meant was that, after having been cooked for 30 minutes, my turkey had been hanging out in a slowly cooling oven for the next two hours.  By the time I checked on it, an hour before we were supposed to eat, I opened the oven door to a very comfortably cool oven.  The turkey might as well have smiled and greeted me with a hello for how uncooked it was.

This catastrophe, combined with the realization that I had forgotten to pick up a splurged order of various breads and baked goods at a local bakery until it was too late, drove me to my room to lay on my bed with the door closed, taking deep breaths. I hate that I am a forgetter. . . and a non-detail oriented person.  

One time, I was in charge of travel to a family cruise in Florida and I scheduled our return flights to be for the day before the cruise returned to port.  In college, I would schedule things so that I needed to be in three places at the same time.  This lack of organization is the thing that I am most tempted to judge about myself. 

Granted, I've come far from those organizationally out of control young adult days.  The years of being a full time mom of an incredibly medically and developmentally complicated child certainly gave me organizational and detail management muscles that I never dreamed that I would have.  I am also a pastor of a church where, together with a multi-talented team of staff members, we function pretty well as an intergenerational, multiethnic community of around 300 people who need to turn a middle school into a place of worship every Sunday.

But every once in a while, I still make mistakes out of my lack of detail orientation and organization especially when I am tired.  No matter how much I've grown and matured, I can't seem to escape this part of my personality.

Two things helped me to pull out of the vortex of self-chastisement.  The first is my amazing husband who did not share my hypercritical attitude.  He just told me that he loved me and drove to KFC and to the bakery to see if he could help save our dinner.  (KFC was out of chicken and the bakery was all closed up.).  Just as he came home, I realized that I had also purchased a small ham to serve at a later gathering.  I threw that into the oven to heat and serve with our stuffing, potatoes and veggies.  Fortunately, Thanksgiving dinner this year was just my nuclear family and my mother so it wasn't a huge deal.  The ham was barely warmed and rather boring but it was fine. 

In fact, the second thing that served to give me perspective and stop being so disappointed with myself was how much Josh loved the ham.  My son LOVED the ham.  He asked for more over and over again.  In fact, at one point, while I got up to get more from the kitchen, he grabbed a slice right off of his grandmother's plate.  My mom reflexes are still pretty fast so I grabbed it right off his plate before he could eat it and made him wait for his own piece acquired in a proper manner.  

At the end of this day, I am choosing to think not about what I did wrong or what didn't go well but about the things that I am grateful for.  The six of us were able to sit together for a nice meal.  We enjoyed the food, especially Josh.  My 83 year old mother was able to spend quality time with us.  We played a little game which had us ask each other interesting questions.  We laughed together about funny stories from our pasts. 

As much as I am a foodie, I have to remember that the food is not the point.  The most important part of any feast is the spirit, the love, the people and what or who you are celebrating.  I hope that I am able to keep this on the forefront of my brain as we enter into another season of food and celebrating.  

21

Last month Josh turned 21 to very little fanfare.  We had a family dinner with my mother and my sister's family.  Josh and his dad shared a birthday cake as is our custom since their birthdays are 8 days apart in August.  

It's strange to think that if he were a typically developing young man, he might be attending college or be in the military.  He would probably be driving and figuring out his relationship with alcohol.  He would be able to vote, gamble and earn a pilot's license.  Heck, in this country, he could even get a concealed weapon license (!) or adopt a child (!)

But most of those things are out of reach for my son and probably will be for his whole life.  Instead, Josh is diligently working on his tasks at his job at the Veterans Administration building such as breaking down cardboard boxes, wiping down tables and filling up salt and pepper shakers.  He enjoys his routine of going to his class at our school districts post-secondary classroom and doing his daily neighborhood walk.  We are still working on chores such as emptying the dishwasher and putting his clean laundry away. 

Josh has a simple, small life but, I hope, a very good one.  He has people who know him and love him.  There are people who are helping him to learn new things.  He is a part of several communities in ways that are meaningful to him.  He enjoys different parts of God's creation such as water, the wind, music and many different types of foods.  He cries sometimes, yells sometimes, and laughs a lot. 

Josh is not like most 21 year olds but he is living a life full of his own kind of meaning and blessing.  I'm so proud of how far he has come and I am confident that he will continue to grow as he walks further into his young adulthood.  

Smelling Mama's Hair

One of my son's obsessions is smelling my hair.  For some reason or another, Josh LOVES to smell my hair.  His favorite thing is to pull my head to his nose and take a good long inhale and then tap it gently with his hands.  Then he usually laughs and smells again.  

The other day Josh was walking toward his school bus in the morning.  When he was about 5 feet from the bus he stopped, turned around and then came back to me, saying loudly enough for the bus driver to hear, "Wanna smell Mama's hair!"  What could I do?  It was easier to let the kid take quick sniff of my hair than to convince him to get on the bus without it.  Maybe it gave confidence for the day.  I don't know.

I wonder if his sense of smell is important to him because he's visually impaired.  That's what they say, right?  That if you have a sense that is underdeveloped or curtailed that you start to strengthen other senses.  I do know that when Josh was young, he had an extremely sensitive sense of hearing.  High pitched sounds like babies crying or certain sirens made him scream and cry and hold his ears. We also went through eras where we put him on a "sensory diet" with routines where I would "brush his arms and legs" and do certain kinds of squeezing on his arms and shoulders to help him to feel calm.  Yeah, I guess raising Josh has been quite an education in how the senses work differently for some people.  Sensory differences are, after all, a huge part of the autism experience. 

But I really have no idea why he specifically loves smelling hair so much but I do know that he has always been especially drawn to long, black hair worn in ponytails like I often wear my hear.  Years ago we were at a one of the girls' soccer games.  Hope was playing and I was managing both Josh and Anna on the sidelines.  Josh seemed happy in his folding chair with his headphones and ipod so I allowed myself to wander a little distance away to be with Anna.  A few minutes later I looked up to check on Josh and saw that he had gotten up and was walking toward another Asian mom with a long, black ponytail.  It was clear that hair sniffing was on his mind. In that moment, time slowed down like at the high point of an action movie.  I found myself yelling "nooooooooooo, Jossssssssssshhhhhhh".  I flew through the air almost sideways like in a John Woo movie (but without the guns) in a futile attempt to keep my son from grabbing this random mom's hair and smelling it.  I can't remember if the lady was understanding or not.  My memory ends there.  

Thinking about that memory makes me realize that Josh has been into hair for a long time.  And we've been trying to train Josh to ask before he grabs people's heads or hair.  I realize that having a young man say to you "Wanna smell your hair please" isn't exactly normal young adult social interaction but it's better to teach him to ask for permission / consent first, am I right? 

The other morning I was helping him to brush his teeth and wash his face.  Standing behind him I put my face up to his head and smelled his hair.  It smelled just the way I remember it smelling when he was a baby.  It smelled like sweetness and connection and intimacy and memory.  In the split second post sniff, I was filled with deep love.  It reminded me of that time when I felt like I heard God say, "Would you raise this child for me?"  And like the first time, I said, "Yes, it would be a privilege."  

 

Mother/Son Vacation

I said that we would just check it out, just take a quick look because by the time we had checked into the hotel and settled into our room, it was late afternoon and much too chilly to swim.  It was even colder than the weather report predicted and I had only brought thin sweatshirts for each of us.  But Josh kept saying, "Wanna go home" so I needed to put some more motivators on the table.  I wanted him to be ok with this quick little mother/son trip that I had brought him on.  So instead of going straight to the car to go get some dinner, we made a brief little side trip to just go look at the outdoor pool and hot tub area.

We rounded the corner and I used my key card to get us into the tiny fenced in area where the pool and little hot tub was. Josh took a good look around and, as he took it in, his visage completely changed, as if he was being greeted by a long lost friend.  The silly-sweet smile that oozed across his face said, "I know what this is! This is something I like!"

When I told him that he could dip a toe into the hot tub, he flung off his Crocs off and plopped his foot into the bathtub-like water.  I could tell by his body language that we weren't going to go straight to dinner.  

"Wanna go in?" It was half question and half declaration.  This kid wanted to go in the hot tub, cold windy weather be damned.  He walked right in with his shorts and underwear on.  I barely had time to take off his shirt and sweatshirt.  Josh spent the next hour enjoying the hot tub.  As he usually does when he's happy, he swing his arms around, sang little bits of songs, and exclaimed words which he made up like "Wash-weh!" and "stuck-tidit".

Well, this is why I decided to take three days and two nights away with Josh.  This week is Josh's spring break but not his sisters'.  Since I am on sabbatical, I somehow came up with the idea of having a mother/son getaway somewhere with a pool.  I chose Salinas because I have been wanting to visit the National Steinbeck Museum which is there and it would be easy to find a decently priced hotel where Josh could swim and enjoy water.

On our second day here we partook in the free breakfast and made our way to the Steinbeck Museum.  I had some amount of trepidation knowing that there was a wide spectrum of ways that this could turn out spanning from massive meltdown to going pretty ok.  After all these years, I know that taking Josh out to public places is always a risk but it's a risk that I am willing to take now and then.  Yes, there is always the chance that he will be walking along and suddenly decide to take a pee into a bush or suddenly get upset but I don't want Josh to live in his room all the time when he's not at school.  And I don't want to feel like I can never do anything interesting just because I have Josh in my life.  

The visit to the museum turned out to be surprisingly successful.  Josh spent a good part of the time by himself in a small, fenced in outdoor area within the museum with his headphones, Ipod and his Magnadoodle.  I would take in one or two exhibits and then walk back to check in on him.  He was fine the whole time, sometimes taking a few moments to walk in circles and feel the breeze on his face.  For the last 30 minutes, I made Josh walk through the exhibit room with me which he was less than thrilled about but was willing to do.  

After lunch Josh and I went down to the pool area where Josh elected to go into the big pool this time and I need to tell you that Josh was happy THE WHOLE TIME!  As parents, our children's joy catalyses our own joy.  It's not the only thing that we want for them but when our kids are filled with happiness and contentment, it touches a deep, central part of our hearts.  We want our kids to be able to enjoy the gifts that life (and we) give to them.  We want them to be happy.  

I find myself wondering if God feels this way about us.  I wonder if God, as a heavenly parent, wants me to enjoy my life, the world, and each moment as much as Josh does.  Does it give God joy when I savor some part of my day or a beautiful piece of writing or a perfect Korean meal? Does my smile make God smile? Is my laughter music to God's ears?  If so, I am going to try to let myself enjoy the things that I enjoy more.  I think of how freely and unselfconsciously Josh enjoys the pool and I will try to be like him.  I hope that my joy, and my grateful enjoyment of God's good gifts to me, is as pleasing to God as Josh's joy is to me.  

For nearly 4 hours I breathed in my son's sweet joy.  He swam around, jumped up and down, flapped his arms, floated on his back and stood quietly in the water with his eyes closed and face to the sky.  Every time I asked him if we should go back up to our hotel room he vehemently declared, "No!"  Finally I had to bribe him to come out with a piece of chocolate that I found in my purse.  We made our way upstairs to discover that Josh thought that the bathtub in our room was just the coolest.  He took a bath for another hour and half.  

Why Does This Woman Get to Influence My Son?

"I think it was from a song by Doja Cat."  Josh's respite care provider hesitatingly let me know that their weekly trip to Trader Joe's did not go as smoothly as it usually did this week.  Apparently, they had to wait outside for a while because Josh was repeatedly singing a phrase from a song which had a bad word in it, a word which he should not be singing indoors while grocery shopping on a busy Sunday afternoon.

"Oh no!" I said to her.  "Was it the F-word?"

I had heard Josh saying something that sounded like the F-word the other day.  You can't always tell because he pronounces certain words in odd ways.  For example, one of his favorite words to say is 'vacuum'.  Unfortunately, it usually sounds like 'f***-um'.  So it can be tricky, you know?

"No, it was worse.  It was the N-word."

My hands flew up to my face in distress. "What?! How does he know that word?" 

Ariana, Josh's caregiver, is a young twenty something who listens to a wide range of music.  Apparently she was familiar with the very song from which Josh was quoting or singing given the phrase which apparently was stuck in my sweet son's head.  

"Why is this person saying the N-word in a song?!" I demanded, more than annoyed that such influence had reached my innocent boy.  

"Mom." My 16 year old daughter had come out of her room to see what the commotion was all about.  "She's black.  She gets to use the word. And she's a rapper."

I could tell from her tone that my daughter kinda couldn't believe that I didn't know who Doja Cat was.  (And I know who she is . . . I just didn't know that she was black or a rapper or, okay, really anything about her but I have heard that name before.)

But Hope was sympathetic to our conundrum.  How do we help a kid like Josh to understand that there are things that you can't say out loud, even if you are happy, even if you are singing, and even if someone else says it, even if it's stuck in your head?

The thing is, Josh has no idea what a "bad word" is.  He doesn't swear or curse or use profane words or images to express that he's angry or cool or sexy.  He does not use words or sarcasm or gossip to hurt people. He does not know how to objectify his own or other people's bodies.  He has no idea that the simple use of certain words said by certain people at certain times reminds the hearers about how language was one of the tools which were used to horrifically oppress an entire group of people in the history of this country and has echos even now.

He just picks up sounds and phrases and repeats them because they sound good to him.  He's just as likely to repeat a phrase from Elmo or the Wiggles as Doja Cat or Kanye/Ye.

As sad as this is, today this reality brings me comfort because Josh's intellectual disability protects him from a having his heart be influenced by the profanity and the negative influence of certain words and phrases in the world around him.  He is not going to learn to think about precious things like sex, our bodies, God, our promises flippantly.  He doesn't know how to say one thing but mean or do another.  He doesn't use words as a weapon.  In this way, Josh is freer than some of the other teens that I know and love.

Now if I can only figure out how to keep him from using the N-word at Trader Joes.  

Tethered

 

I've realized that there are some ways in which the isolation which came with the pandemic did not feel new to me because for the past 18 years we've been responsible for an eternal toddler who must be watched at all times else he get into all manner of trouble.  This has not meant that we couldn't go out or see people or travel but it has meant that we do much less of these things than many of my friends and neighbors. My husband and I have been tethered by Josh's needs, sensitivities and limitations.  

This photo is from a recent day when we left him alone in the bathroom for just a little too long.  Someone had started him in the tub without putting everything away so Josh poured an extra large jug of Head and Shoulders into the tub and then pushed the jacuzzi jet button.  I walked in to find most of the bathroom filled with a hip high layer of bubbles.  

My first thought was "Oh my God.  We can never leave him alone ever.  I have to give up everything I ever wanted to do outside of this house.  I will never have freedom and independence ever again."  

Woah.  

Where did that come from?  After all, I have a full time job and an office that I can go to even during Covid.  I have the partnership of a wonderful and capable spouse who is currently taking the lead role with Josh.  I now even have two in-house teen aged babysitters who say that they will only charge us "half price" from their usual rates when they babysit other people's kids (actually, they don't really charge us but often insist that we Doordash them something).  

I think that it's triggering for me when we have an incident like this because it exposes my fear; fear that Josh will never grow in independence, fear that something really bad will happen to Josh because we weren't watching him well enough, fear that we will not have a good future because of who Josh is.  

It really is more about the fear of the future because the present is pretty ok.  

What is the antidote for this kind of triggered fear? 

First of all, breathing.  Sit.  Breathe.  Wait.  Keep breathing.  Feel the fear.  Breathe again.  Wait some more.

Secondly, and this is way later after your actual body has calmed down, ask.  Ask yourself what is going on. Ask God to help you.  Ask your body, how it's doing.  I think that slowed down asking is really good.

Finally, wait for grace.  Seriously, grace usually comes when we ask and when we're open.  That grace might be through peace or perspective or a memory or humor.  The grace might come much, much later and it might be really tiny but my life experience tells me that grace does come.  And when you see it or sense it, take it in.  You need it.  You were made for it.  

I did this just now and the new perspective that I received was that I am tethered to Josh but through the lens of grace, I believe that it is a good thing.  Messed up bathrooms can be cleaned but the love and transformation that comes from my relationship with my son will be forever.