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.

Snapshots from the Short Bus

For years I’ve been so preoccupied with getting Josh onto or off of the bus that I have rarely paid attention to the other kids who ride the bus with him.  We live on a busy street with two elementary schools on it so the morning and afternoon bike and car traffic is pretty intense.  I’m aware that there is usually a line of people behind the bus waiting for me to load or unload so I try to move quickly. 

Most of the kids who ride the bus with Josh are not easy to get to know, especially when you don’t have a lot of time.  Many are non-verbal and do not make eye contact.  

For example, one boy never, ever looks up, even if Josh sits near or next to him.  He always has his eyes closed or seems to be looking out the window at nothing in particular.  In over two years of being on the bus with Josh, I have never heard him utter a word, much less try to interact with anyone.  One day, I was surprised when he handed me an envelope on which he had written Josh’s name in shaky letters.  It was an invitation to his birthday party. 

I moved heaven and earth in our family schedule so that Josh could attend this, his first “drop off birthday party” for a peer at school.  When we arrived at “Bill’s” home, Bill greeted us at the door with absolutely no affect on his face.  However, his mother greeted us warmly and told me that her son had really, really wanted Josh to come to his party.  Apparently, he has a great affection for Josh and often tells his mom about how Josh seemed to be doing, like if Josh cried on the bus or if he sang along to songs being played on the radio.

The party was a sweet gathering of 10 young teens mostly from the other special ed. class at Josh’s school that is comprised of slightly higher functioning kids.  Bill’s mom assured me that she and her husband could handle Josh if I left for a few hours.  I did and came back slightly earlier than I said that I would.  I found Josh to be a picture of contentment, happily eating his fourth piece of pizza and humming to himself in the sun.  Apparently, they had played a game where you look for hidden pieces of candy in the garden and he had done quite well.  (My visually impaired child always seems to have excellent vision when there are treats involved.)  The other kids were occupied with riding or analyzing the zip line that they had installed on their property.  I was struck that Bill and his friends were sucking the marrow out of the moment together in their own autism spectrum kind of way.  Bill seemed very energized yet relaxed.  He buzzed back and forth between his other friends and Josh, expressing in his own way that he wanted Josh to be happy. 

As I chatted with Bill's mom and just watched him work the crowd, I realized that Bill is a young man with a rich, beautiful, engaged life, which you would never know from just observing him looking catatonic on the bus (when he is probably tired and uncomfortable).   Apparently, he has all sorts of passions and interests such as VIP baseball (for kids with special needs) and ballroom dancing.  I wonder how many other times I make false or shallow assumptions about kids just because they initially present differently from neuro-typical kids.

The other day, I took a moment to ask a girl who has ridden on the bus with Josh for a long time how she was doing.  She smiled and told me, in her halting way of speaking, that she really, really wants Josh to go to the next school dance and that she noticed that his sister’s haven’t been coming out to get him off of the bus as much as they used to.    She even remembered Hope and Anna’s names!

I laughed out loud with surprise and joy at how sharp this little girl is and how much is going on in her head.  I saw for the first time that she, too, is a complicated, beautifully-minded person.  There is so much beneath the first layer of what one can see or experience with kids like this who ride the special ed. bus.   Far from being “simple” people, kids with intellectual disabilities are just as dimensional and profound people as anyone else.  It’s just that you have to be even more patient and observant to access it.  I’m so grateful that Josh gets to “be in community” with these complex and wonderful kids who are much more than what they seem. 

The Purpose of a Flower

“In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here?  Can’t you get busy some way?” and then finds himself unable to understand the flower’s response:  “I’m sorry, sir, but I am just here to be beautiful.”    

                                                                        Henri J.M. Nouwen    Creative Ministry

When my son is being slow I find myself so easily frustrated.  Sometimes it takes him forever to get out of the car or to decide that he’s done at the toilet.  The busy mom in me, who is always aware of the millions of other things that I need to get done that minute, is tempted to blurt out, “Josh, why can’t you go faster!?”

Life with Josh is never expeditiously productive.  Josh doesn’t think very quickly.  His body doesn’t decide to do things very easily.  Communication with Josh is like being at a coffee shop with intermittent wi-fi. 

Usually, at the zenith of my impatience, I find that God gets my attention.  He often plants a question in my mind like, “Why do you need Josh to be more effective and efficient?”   I am guessing that it has more to do with how I feel about myself and about my life than a true assessment of what my son is able to do in that moment.

I also begin to realize that my son was not created to be fast.  Josh will never be a resident in the realm of high productivity or immediate transformation.  

Josh is here on this planet to be a parable about a different way.  His purpose is to make people slow down, even to stop for a bit.  His impact will be on those who are willing to pause and rethink our assumptions about how things have to be.

The other day Josh walked out of the house loudly munching on a zucchini like it was an apple.  I had a knee-jerk response to rebuke him.  “No, Josh, we don’t eat uncooked zucchinis!”

One of my girls asked, “Why not, Mom?”

You know what?  I did not have an answer.  Yes, it was unwashed but that isn’t the biggest deal in the world.  Why can’t you eat a raw zucchini if you want to?  I have eaten them diced into salads before.  There is nothing inherent in a zucchini that necessitates cooking.  If my child is happy to eat a vegetable, without my forcing him to, why would I stop him?

“Well . . .  go ahead, Josh.” 

I put my unemptied grocery bag and armful of jackets down and sat on the bench in front of my house and watched him eat the whole zucchini with great gusto like it was a sweet, juicy peach.  Upon finishing, stems and all, he looked very satisfied and amused.  He started clapping and humming, choosing this moment to have a little celebration.  Watching Josh quieted my spirit.  I smiled, knowing that Josh had been placed in my life just to be beautiful. 

Slowing Down and Doing More

"Want dried mango."

Josh and I were careening down a crowded aisle at Costco today when he spied one of his favorite treats and quickly asked for it.  Although Josh is legally blind (20/200) due to an underdeveloped optic nerve, he often surprises me with how well he can use his vision when he really wants to.  I was reminded of how every trip to the store can be a learning experience if I let it be.  My girls were on a bike ride with their dad so we had plenty of time.

"Ok, Josh" I told him.  "You get one and put it in the cart."

He did so with ease.

Usually, I speed through these visits to the store hoping to simply keep him happy and avoid a meltdown.  It usually involves hitting up all of the free sample tables and keeping Josh occupied with a steady flow of snacks.

 But last week, I had gone along with Josh, his aide and his orientation and mobility specialist (a therapist for visually impaired kids) as they went on a field trip to the local drugstore to teach him how to search for items, to manage a basket and to pay for those items with money from a wallet that they had put in his pocket. It was amazing to see how much he could do given patience, intentionality and plenty of time.  He still has lots of skills yet to master but this was a great start.  I was convicted that I need to let Josh do things on his own more if he is going to begin learning those life skills that will help him to grow up and learn to interact with the world more appropriately.

So today, for the rest of the time at Costco, I made Josh find all of the items on our list and put them in our cart himself.  Then he helped me put the items onto the check out counter.  When we got home, I asked him to help me carry everything into the house or into the garage.  It took forever, and he dropped many items several times but we finally did it.

He was definitely more resistant to me, as his mom, than he was to his educators.  I suppose this is because, as a busy mom, I usually do way too much for my kids rather than to take the time to make them do age appropriate things on their own.  I realized that this is true for my girls as well when my 7 year old feigned helplessness the other morning when putting on her tights (which she totally was able to figure out by herself).  Why is it so attractive to make one's Mommy do things for you?  And why, is it so tempting for a parent to do things for your kids that they should be doing on their own?

For me one of the greatest barriers to fostering independence for my typical kids as well as my child with special needs is my desire to get things done quickly.  On one level, it IS faster to do things for your kid.  Tying their shoes for them, putting their dishes away for them, prepping their backpacks, it's so easy to just do them for my kids rather than taking the time to force them to do them for themselves.

But here's the thing.  If I do things for them now, I just may have to do it for them forever.  I have a feeling that they will never magically hit that moment where they just decide to take responsibility for themselves and for their stuff.  SO, I have to remind myself that it is worth it to give each of my kids chances, whenever I can, to learn to do the things that I COULD do for them but that they must learn to do as well.  In order to do that, I need to SLOW DOWN so we can not only get the thing done in the moment but to teach my kids to do them for a lifetime.  

Lemon Tree

I have a love/hate relationship with the lemon tree in my backyard.  Years ago, when we first moved into our house, my sister bought me a miniature lemon tree in a planter at Home Depot as a housewarming gift.  I was very excited because I live in a part of the county where citrus trees grow quite well.  When you go walking around our neighborhood, you will walk past many, many fragrant and beautiful trees full of lemons, limes, and other citrus fruits.

I planted this tree, fertilized it and watered it regularly.  I can see it from my kitchen window so I often looked at it and looked forward to never buying lemons again.

Alas, it refused to produce fruit.  In the past 6 years of having this tree, it has only produced around 5 lemons.  And these lemons were dry and not very juicy!  I read up on the care and feeding of lemon trees.  I bought more fertilizer.  I even talked to the thing.  Still no fruit.

I began to resent this tree.  Why are you taking up my time and energy?  I wanted you to be productive, to save me some money over time.  I even thought I would be able to share of your abundance with my friends and neighbors but no!  This year, it looked like it was going to be another no-fuit year.  I thought about how Jesus cursed the fig tree for not having fruit.  I thought about doing the same.  Or at least getting rid of it and trying again with another type of citrus.

One day, I looked out my window and this is what I saw.  The tree offered me this one ripe lemon like a mocking gift or, perhaps, as a peace offering.

I've been thinking about this lemon and what it might represent.  Like most things of mystery in my life,  it made me think of my son.  He is the other thing that I spend so much energy nurturing, hoping for good fruit.  And in some ways, he is a "fruitful vine".  He produces laughs and smiles and happy moments aplenty.  He adds to our family in and our community in ways that are difficult to quantify.  However, in some ways, he leaves me waiting for the fruit that I hope for and expect.  The normal ways that we expect a child to be productive, in terms of educations, learned skills and capabilities are slow in coming for Josh.  It has taken Josh 6 years of public education to be able to spell his first name.  Like my lemon tree, it takes Josh much, much more time to do what he's supposed to do.

Ultimately, I don't have to accept that from my backyard lemon tree.  At some point, it may be time to decide that this tree needs to produce or else.  However, although it hasn't given me many lemons, it has given me a picture of growth that is slow and surprising. It has been a parable to me, instructing me in the mysterious and uncontrollable ways of growth.  You can't make growth happen.  You can just be a part of it and see what you are given.

Learning Something that's Really Difficult

When was the last time you really gave yourself to learning something that was really, really difficult?  I am 43 years old and I am finding that I have very little capacity to learn something new at this point in my life.  I have a friend in her late 30's who is taking piano lessons for the first time in her life.  Another friend who is learning how to swim.  I have numerous mom friends who are discovering a new found drive to run marathons or tri-athalons (and posting the pics on Facebook).   I'm quite impressed with all of them.  I had a brief thought that I would learn how to knit and teach my girls.  This idea was almost immediately abandoned with one glance at my daily to do list.

Learning something new can be really hard.  This is especially true if you are not particularly motivated to learn it. Or if you are a person who, like many autistic individuals, has a difficult time being motivated by much in the first place.

The number one task that Josh needs to learn right now is to wipe after he goes to the bathroom.  At 10 years old, Josh is ALMOST done with toilet training.  It's been 8 long years of adventures in potty training and my son has come a long way.  He has not had an accident in almost two years.  He takes himself to the bathroom, even if it's in the middle of the night.  The only problem is that he has not mastered wiping.  If and when it's up to him (and if he's not being supervised) he's quite content to poo then just pull up his pants and just move on with his day.  His mom is not so happy with this.

With the help of his home therapists, we are working on a strategy for mastering wiping.  The first step is to teach the process of wiping in general.  Thus, we have been practicing putting peanut butter or chocolate sauce or toothpaste on his arm then wiping it off with a toddler wipe.  We ask him to look at the wipe and answer the question, "Is it dirty or clean?"  On a good day, he can get it right about 75% of the time.  On a bad day, he does not care one bit and seems greatly annoyed that we are asking him to engage with this inane task so he just echo's whichever option was given to him second.  ("Is it dirty or clean?"  "Clean."  "Is it clean or dirty?"  "Dirty.")  On a very bad day, Josh resorts to crying and head hitting which usually results in peanut butter, chocolate or toothpaste in his hair.

Everything that Josh learns how to do for himself takes about 5 to 10 to 100 times longer than your typical person.  Using a fork, putting on a t-shirt, putting on his own seatbelt; all of these things have taken an unbelievable amount of time and coaching to master.  However, in so many of these things, ardent practice and great determination have yielded success.  Sometimes I can't believe how much he HAS learned to do for himself!

Yet with every challenge, I can feel like "this one is going to be impossible".  It's just so darn messy to make Josh keep working on wiping himself.  His visual impairment, low motor abilities, and lack of motivation results in a "poop getting everywhere" scene almost every time.  It's incredibly un-fun. Thus, it's so easy to take the short cut and just do it for him "just this once".  Yet I know that we are on a long journey and we must prevail.  I can't be wiping Josh's butt for him when he's 30.  This lesson, tough as it is, must be taught and the skill must be mastered.  I am praying for the determination, endurance and discipline that we need to help him to learn this really difficult thing.

What are the things in your life that are really difficult for you to learn?  Where do you experience the  need for determination, endurance, and discipline?