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.  

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.

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.

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.

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.  

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.  

The Blessing of a Meal Delivered

Sometimes I like to pick organic food from my winter front yard garden like onions, chard, kale, spinach, lettuce and herbs and prepare a healthy meal together with my three children.  The girls are much more likely to eat vegetables that they have helped to prepare. Even Josh gets into the kitchen activity by helping out with the washing and cutting.  I like how everything feels very warm and "hearthy" as we cook our dinner together.  We often end up singing together and I tell them stories of how my sister and I used to enjoy learning about the pleasure of cooking from my mom.

I'm just kidding.  The above paragraph is me falling into a fantasy of idyllic, unrealistic mommyhood.

Yes, there are days when I pick vegetables from my garden and whip up a salad.   Yes, sometimes I have a vision for dinner early in the morning, prep it all and pop it into the crock pot by ten in the morning.  Yes, the girls do sometimes help with dinner prep and they always set the table but it's rarely the happy, zappy picture that I imagine that it could/ should be.

But there are days, my friends, there are days when I feel like would rather stick knitting needles in my eyes than make dinner.

Do you ever approach 5pm and find yourself realizing that it would take every single ounce of motivation and energy that you have in your profoundly tired and spent body to cook dinner for your family?  Are you ever tempted to spend large amounts of money on cardboardy, unnutritous food YET AGAIN because you cannot bear the thought of pulling out that skillet to create something that comes from your own refrigerator?  Does the thought of doing dinner dishes fill your heart with heavy, gummy, sticky dread?

It was on a day such as this a few weeks ago that I experienced "The Blessing of a Meal Delivered." My husband had had a minor surgery on his knee and, therefore, had to ask for my help every time he needed a glass of water.  The girls were taking turns being sick.  Sleep was not good for anyone that week.  Joshua's home autism therapy was hitting some walls and needing much more of my attention.  It wasn't like my life was on fire but I was WORN DOWN.

A few friends from church rallied to deliver us a few meals.  Each meal was stupendously delicious because someone else made it and they infused it with love.  The picture at the top of this post captures one such beautiful meal.  Ironically, it was a vegan meal delivered by a family that is vegan.  I don't know if my kids even know what veganism is and they certainly have never had a whole vegan meal but we all devoured this dinner with deep appreciation.  German vinegary potato salad, super wholesome, nutty, chunky bread, well-spiced and tasty veggie burgers, it was all fantastic.  And it had been delivered by a smiling, empathetic person who cared about us. Truly, it was the grace of God made manifest in a real way to my somewhat mildly overwhelmed life.

If you know someone who is having a hard time, consider offering to bring them a meal.  Prepare something yummy and somewhat homemade.  My suggestion is that you bring it to them in either disposable or pretty serving dishes which they can return with no hurry.  Include something healthy and something chocolate.   And never, ever underestimate the blessing and power of a meal delivered.

Why I am Grateful for Josh Today

While on a pre-Thanksgiving walk with me yesterday morning, Josh began to sing a muffled version of "I Don't Need Anything But You" from the Annie soundtrack.  He knows the song because his sisters uploaded it on his ipad and he listens to all of the music on that device constantly.   I decided to join in and we sang a silly little "Josh style" duet.  I would sing most of the line and he would sing the last couple of words.

 It went like this:

Susan:  "Together at..."

Josh:  "last."

Susan:  "Together for..."

Josh:  "ever."

Susan:   "We're tyin' a knot, they never can..."

Josh:  "sever."

Susan:  "I don't need sunshine now to turn my skies to..."

Josh:  "blue."

Susan:   "I don't need anything but..."

Josh:  "you."  

Josh had no affect in his voice as he "sang" but I could tell that he was having a good time. We walked for a while like that in the woods near the little town where we have come for a few days of Thanksgiving vacation.  Josh vacillated between wanting to sing and just stopping to clap for a while, making happy vocalizations.  No one was around so just let him do whatever he wanted.  He seemed extraordinarily content.

Inspired by my son's joy and detached from the many needs of my family, my house and my life, I began to count the things that I am grateful for in my son's life.  Here are a few of them:

1.     I am grateful to be able to go on a walk with Josh.  When we were first told of his diagnosis, our doctor told us that it was questionable whether he'd be able to walk at all in his life.

2.     I am grateful for how far Josh has come in his behavior management.  He rarely bites himself or others anymore.  He has outgrown his tantrums and has only cried a handful of times at school this year.   This is amazing given where we have come from.

3.     I am grateful for the variety of foods which Josh is able to eat.  So many kids with special needs also have dietary limitations or allergies.  Josh loves to eat a huge variety of fresh fruits and vegetables.  He is my my most flexible child when it comes to food.  

4.     We have come so far in Josh's toilet training.  I'd say that we are 97% there and if we could just get him to commit to a higher level of quality control with wiping, we'd be done!  It's taken about 10 years but this is not easy stuff for a kid like Josh and we've had to divide it up into about 40 different steps which each had to be mastered.  I'm also so grateful for the dozens of therapists, aides and specialists who have helped us in his process of learning.

5.     I'm grateful for the parable that Josh is in many so people's lives.  Tim Shriver, the CEO of the Special Olympics and the nephew of President John F. Kennedy said of his intellectually disabled aunt, Rosemary Kennedy, "She walked in the house and she didn't have to do anything. Everybody loved her," Shriver recalls. "And you didn't have to do anything for her. She'd sit with you and talk to you. Play games. Swim. Walk. No earned love."   Like many people with intellectual disabilities,  Josh is my constant reminder of the intrinsic worthiness of any person.  It's the love and touch of God which gives us value, not what we can do or accomplish.  Therefore, we are free to rest, just be together and work hard since our identity is wrapped up in none of these.  

Have you taken a few moments in the past couple of days to reflect upon the things that you are most grateful for?  If not, I strongly suggest that you take time to take a slow walk by yourself or with someone that you love.  It's a great gift in making space to savor the good things of your life and to give God some applause.

The Red Vest and Hope for the Future

Have you ever reached a milestone and not even noticed it only to realize that you've been working toward getting there for a really, really long time?  I remember one day in college when I realized that I was no longer putting much of my day's energy into being insecure.  I just stopped in my tracks one day as I walking through "the quad" of my college campus and thought to myself, "Wow.  I used to be so consumed by negative thoughts about myself and now, I'm not . . . so much."  It's like I had been walking, walking, walking toward a certain direction and then when I got there, I turned around and realized that I had walked about five thousand miles.  Sometimes, you just have to stop and celebrate how far you've come.

Today is one of those days in my life of parenting Josh.  It was a normally chaotic school day morning.  Alex was entangled in some sort of high level conflict mediation with the girls so I picked up Daddy's usual mantle of getting Josh out the door to his bus.  I could hear the honk of the bus in front of our house and I thought of the line of cars that was probably beginning to grow behind the little yellow bus so I rushed to get Josh out the door.   Suddenly, I realized that I needed to put the field trip permission slip into Josh's backpack so I started barking orders to my usually very passive son.  "Josh, put your shoes on!  Josh, put on your red vest.  It's cold outside.  C'mon, go, go!  The bus is waiting!"

By the time, I got his permission slip ready to go, Josh had not only put on his shoes and vest, he had zipped it up and was dragging his backpack out toward the bus.  I took one look at him and was smacked in the head with a realization:  Josh had fastened and zipped up the zipper on his red vest all by himself for the first time ever!

You need to know that we have been working on his fine motor skills since he started physical and occupational therapy which was before he could even walk.  Due to low muscle tone and his visual impairment, learning to do every "normal" task whether opening a door to walking up stairs to putting on his underwear is a big project. We have to do a task analysis, get a strategy for training and practice it a million times.

Josh has been working on zippers and snaps and buttons for at least 8 years now to no avail.  Not only are these things very difficult for his clumsy little fingers, he's just not motivated to do them and (with his visual impairment) it's difficult for him to see little things like zippers well enough to manage them.  He doesn't care that "big boys" can do these things by themselves.  To this day, he just wiggles his jeans down when he needs to go to the bathroom rather than unsnapping and unzipping because he can't manage the snaps or buttons.

Honestly, I never thought he would be someone who could zip up his own jacket without help.  I just imagined a life of helping him with these things.  Yet here he was zipping up HIS VERY OWN VEST!  My mama-pride knew no bounds!  Despite the waiting school bus and the long line of waiting cars behind it, I could not resist taking a moment to snap this photo.  I almost wanted to go up to every car waiting behind that bus and tell each of them, "Hey guess what? My son zipped up his own vest today!"

Josh's sudden ability to zip up his own vest gives me immeasurable hope for the future.  If he can master this, maybe someday he can he could fully go number two all by himself, wiping and all!  The thought of saying to my son, "Hey Josh, go take a shower" and having him be able to do the whole thing by himself makes me giddy with joy!  Better yet, what if he could discern for himself that he needed a shower and then took responsibility for his own personal hygiene?  This is crazy but why not?

After all, despite long, long seasons of non-growth, suddenly things can change and people do move forward.  Sometimes it takes forever but anyone can learn and grow.  And when growth happens we have to mark it, celebrate it and take it as a gift of hope that there are more good things to come for the future.

Going to See Movies with Josh

Josh has seen exactly three movies in a theatre in his life. The first time was about 2 years ago when we saw The Muppets.  We brought an extra adult with us and we armed ourselves with a very expensive amount of popcorn and other snacks.  Still, Josh was overwhelmed and melted down.   Alex had to take him out to the lobby and even go for a long walk in the parking lot, missing most of the movie.  

The second time was about 6 months ago when I took the girls, Josh, and a trained autism therapist to a  viewing of the movie Planes.  Our local theatre hosts monthly "sensory friendly" viewings of films where the auditoriums have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing.  It felt like a big risk to try it again but, what the heck, we live in America and kids in America go see movies.  Alex and I love movies and wouldn't it be great to be able to go to them with our whole family sometime?  I really wanted to try it again.  It felt like we were "in training" for Josh to be able to gain the sensory muscles to go see a movie.  

Shockingly, it was a great success.  Josh not only sat through the entire film but he was happy and "sang" along and clapped at various times as well.  He ate a huge bag of popcorn during the show but that was fine with me.  He actually was more calm than his two sisters, who sat on either side of me, gripping one of my arms with ferocious desperation and breaking down into sobs because of the intensity of the surround sound music and some of the tension points of the story.  They pulled it together well afterwards and now they claim that they loved Planes and talk about it fondly, as if seeing it had been a wholly pleasant experience for them.

My girls really wanted to see the new Disney movie, Frozen, during this holiday break.  At first, I planned to leave Josh at home with his dad, not wanting to deal with the energy that it takes to plan to attend something with Josh.  But at the last minute, we decided to just go for it and see it as a whole family. My niece and my mom came with us so I felt fortified in terms of adult resources in case anything went wrong.

At first, Josh was clearly anxious.  He did not want to go in and, once we sat down, held my hand tightly as if he was afraid that I might leave him alone in the dark theatre.  But once the movie started, Josh started to relax. He clearly enjoyed the musical numbers within the film (there were many).  He started to smile and giggle and remained relaxed through out the entire show.  He vocalized and clapped a little bit but was willing to quiet down quickly at my whispered encouragements.  I also handed him a tangerine every time he started talking and he was happily distracted.  Strangely, he declined to have any popcorn today.  At the end, he didn't want to leave until the credits (and music that accompanied the credits) were over.  

My son has come so far in his abilities to manage sensory input.  As a younger child, the world seemed to be a place full of auditory and visual threats.  Josh succumbed to panic, tantrums, and melt downs so much more than he does now.  I am so proud of him and I want the world to know that Josh is maturing, even within his own autistic world.  It seems odd to call "going to the movies" a risk but, for us, it is.  And if we had never taken this risk today, we would never know how Josh is growing up into a guy who can handle so much more than I ever imagined.  

Joshua's Happy Day Poem

Spending three hours at a big pool with a mushroom shaped thing that overflows with loud falling water.

Coming home to a snack of avocados, tomatoes from Mom's garden, fresh crusty bread studded with roasted garlic, and almost a whole bag of frozen mangoes.

Realizing that I know how to sneak marshmallows from the pantry while my mom is distracted.

My tired sisters reading silently in a room where I am not.

My mom kissing me with her eyelashes causing me to laugh really hard for a long time.

The prospect of spending the rest of the afternoon in my bedroom with loud classical music and the freedom to draw showerheads and hairdryers on my magnadoodle over and over again.

Sheer summer bliss.


By Joshua Van Riesen
(as intuited by his mother)

Everyone Else

It all began as a simple conversation about summer camps for kids with special needs.  The other moms that were standing around with me at the birthday party for a child in Josh's special education class began sharing about various day camps for special needs kids that they had absolutely loved.  When I asked more about them I realized why I had not tried them.  These camps were way beyond my price range.

This should not have surprised me because all of our kids are 1:1 type of kids.  That is, they each need a full time, dedicated adult to be around them at all times.  Our kids can't be at regular camps where they have a teen counselor for every 5 or 8 or 10 kids.  No, many of our kids have seizures or would wander off or would have no way of participating in most activities without constant attention and guidance.  Higher ratio of adult to kid means higher cost.

In that moment, I realized that there are a lot of resources out there for kids like Josh.  I just can't afford them.  And these moms could.  I looked around and realized that every child at this party had come with a parent and a full time nanny.  One boy had come with two nannies (one for himself and one for his typically developing sibling).  I started imagining the freedom that I could have if I had a full time nanny.  And a nanny for Josh's sisters. . . what would THAT be like?

Among the guests at the party were the aides or therapists from the school classroom.  Apparently, the birthday girl's family had hired several of them to work with her at home, for private pay.  I had no idea that you could do that but I could guess that their time came at a significant (for us) cost.

I looked around the house that belonged to the family that was hosting the party and realized that it was a lovely, lovely home.  I heard that they were in the midst of moving to a larger (probably lovelier) home in our same city.  I saw the nice cars that the other guests drove to this party and imagined that they, too, lived in lovely, spacious homes where their children experienced excellent developmental therapies in tidy, well-organized rooms.

My attention turned to how these moms were dressed.  Their clothes were expensive and stylish.  Somehow, they seemed to have had time to do their hair and put on make up (maybe while those nannies were watching their children?)  I glanced at a mirror momentarily while following Josh around the house.   The tired looking person who looked back at me was wearing a stained t-shirt and $5 flip flops. Her ponytail begged to be redone.

It was in this context that I started down the path of covetous thinking.  Specifically, I began to entertain thoughts like, "Everyone else has a lot more help with their kids than I do."  I began to suspect that "everyone else" can afford developmentally fantastic camps for their special needs kids and that "everyone else" must have plenty of space and resources to take care of yourself and look fabulous at all times.

Now, the problem with "everyone else" thinking is that it's usually formed in the midst of jealousy of a specific group of people that you are focused on and without very much perspective on the bigger picture.  For example, do I really think that all parents of special needs kids have plenty of help?  Does every family have a lovely, spacious home?  Of course not!  In fact, not every family in Josh's class has tons of resources.  It just happened that the folks who had gathered at this party did.

When I am in my right mind, I know that I have been blessed with a lot of support and resources.  It's like when my girls come home and declare that "everyone else" is going to Hawaii or Disneyland for spring break.  There is no objectivity, only desire together with a sense of having been slighted and a good dose of ungratefulness.  Also, there is the refusal to consider and factor in the people who have more suffering and fewer blessings than we do.

Our hearts get to the place of wanting things that others have and we add fuel to the fire by believing, even temporarily, that "everyone else" has them.  The fruit of this, of course, is unhappiness and self pity.  Have you ever hung out with a bitter person who is convinced that they always get the short end of the stick and that "everyone else" has it better?  Not fun, I tell you.  Personally, I'd rather dig ditches in the hot sun.  God, please don't let me be like that!

So, today I am purging myself of "everyone else" thinking.  I am asking God to help me to accept that my life is my life and that He knows what He is doing in laying down the boundaries of my life in the right places.  I am going to continue to put my all into making my life what I want it to be but I don't want to be distracted by (my perspective on) the lives of other people.  I want to be a joyful, grateful person and I'm convinced that covetousness and comparison are not my friends in that journey.

What's your thing that you are tempted to think that "everyone else" has?  How do you need to lay it down today?