Two Words: Retainer and Toilet

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

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

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

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

"Yes"

"What do you need to say?"

"Thank you."

"No Josh.  Sorry."

"Sorry."

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

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

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

Miraculously, my daughter was frustrated but not angry.

"Why aren't you angry, Hope?"

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

Clean, Dirty

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

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

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

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

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

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

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

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

Ecclesiastes Chapter 3 says, "For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to throw away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to throw away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.

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

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

How is My Son Different From a Dog?

A few months ago, my husband saw a request for a dog sitter on a neighborhood email list.  It was Christmas break so we thought it might be a good opportunity for our girls to learn responsibility and to see if Josh was at the place where he might enjoy or benefit from a dog.  Well, one thing has led to another and we are now on our ninth canine guest in our home having become official dog sitters on Rover.com.  Hope and Anna have become quite the savvy internet business gals, updating our website regularly and passing out our business cards to anyone with a dog at the neighborhood park. The girls are saving up to buy Kindles and thanks to our dog sitting business, they are pretty close to their goal.

One of our favorite guests was Molly (the black dog in the photos above).  We really bonded with her because she stayed with us for four nights.  She's a passionately relational family dog from a household with three energetic kids.  Molly was a long-suffering angel with Josh, snuggling in his bed for hours at a time patiently abiding his awkward pats and obsession with her tail.  We all bonded quickly and deeply with her.

During Molly's visit, I was running errands with the kids and the dog when Hope astutely observed, "Hey, Molly is like Josh in a lot of ways.  She doesn't talk, she has black hair and she has to be taken on walks, just like Joshie."

I smiled because Hope was tapping into a conversation that Alex and I have been having.  Don't tell anyone but sometimes we (sort of, semi-jokingly) ask each other "What is the difference between having Josh and having a dog?"

After all, life with Josh is still based on primarily non-verbal communication.  We still have to help facilitate his toileting, manage his food needs, and make sure that Josh gets proper exercise.  Josh communicates his love and affection for us primarily by snuggling, just being around and being himself.   Honestly, having Josh is not unlike having a pet.

And a part of me realizes that this is not entirely an insult to Josh's humanity.  Having had a number of dogs in my house recently, I've come to realize how precious and profound animal companions can be.  When one of  my daughters found out that she didn't get into a play that she had auditioned for, the first thing that she asked me was whether we had a dog at our house that day.  She wanted some unconditional love and connection to comfort her.

I also read an article from a local psychologist who was commenting about what parents can do to help our stressed out adolescents to grow up with good mental health.  (Our town has had a disturbing number of teen suicides in the past couple of years.)  One of his suggestions was to have a pet.  The role of pets in enhancing human well being is both well-documented and intuitive.

Some theologians such as Andrew Linzey have written about a "theology of animals" exploring what the Bible may have to say about a compassionate, respectful relationship between Christians and animals.

We live in a country that clearly values our pets, even to the degree that we are projected to spend $80 billion on our pets this year.  This is remarkable given the fact that the United Nations estimates that the cost to end world hunger (for people) would be about $30 billion.

Yet, the reality is that although Josh is like a pet in some ways, Josh is not our pet.  He is our son. Genesis 1:24-31 illustrates God's intention that people are the pinnacle of God's intent for His creation.  People alone, of all of God's creation, are created in the image of God.  Despite Josh's limitations in communication, productivity, and independence, he still embodies a special reflection of who God is.  Even in his brokenness, he has a place among those of us who, as people, have a unique, though not exclusive, role in the history of God's redemption of the world. Furthermore, I'm not sure what the eternal destination of animals or pets will be.  I do know that all people, no matter our physical or intellectual abilities, have set before us the invitation to eternal communion with God.

It's hard to explain these thoughts to my nine year old daughter.  To her, I simply said, "Yes, Hope, Josh is like a dog in many ways.  But he's not just a member of our family like I dog might be if we had one.  He's your brother and our son.  And that's very, very special."  She smiled and said, "I know, Mommy."

Mess and Beauty

Today was a wonderful, delightful, horrible, draining, inspiring, uplifting, confusing, chaotic, burdensome and beautifully rich day.  Ever have one of those?

This afternoon I took Josh with me to our monthly visit to serve dinner to local homeless folks.  My husband and I usually take turns bringing one of the girls along while the other parent stays home with Josh.  The church where this meal is hosted is lovely but the whole experience is rather loud and chaotic.  We've always just assumed that Josh would hate it.  Today both girls happened to have activities this afternoon so I took a risk and went with my son.  Developmentally disabled, visually impaired autistic people need to serve too, right?  

Josh hung in there much longer than I expected.  From the first few minutes he kept saying, "I want car." but he eventually let me put some thick, purple latex gloves on him and helped me serve rolls with a pair of tongs.  The tongs were not easy for Josh to manage but as he gave himself to the task, his dexterity improved, especially since I told him that he could eat some of the bread after we had served the people.  My guess is that he served about 30-40 guests before he plopped himself down on bench behind me and loudly declared, "Want bread."  He spent a good chunk of the rest of the time gnawing on a roll (or five).  

Josh had a subtly softening effect on the clients, even the clearly mentally ill ones.  One gentleman who was wearing a toga made of torn cloth with lavender flowers tucked behind each ear gave Josh a little smile as he went through the line.  It reminded me of how infants or dogs bring out kindness and gentleness in people.  

By the end of the evening, several homeless folks came up to Josh and thanked him for his service.  I was worried that people might be offended by Josh's lack of social response or even eye contact so I said, "Sorry but he doesn't really talk."  The gentlemen were not at all deterred.  One nodded vigorously and knowingly said, "Oh he knows exactly what I'm talkin' about.  He can talk all right.  We just don't understand him."  

Another man who had worn a hard, even fierce look on his face during the whole meal took a moment to encourage me before heading back out onto the street.  "You're doin' a good job with him. He's a fine young man."  This really touched me.  Honestly, the man has no idea whether I'm a good mom to Josh or a complete whack case of a parent but he wanted to extend some kind word to bless me.  I'll take that.  

Josh sang and laughed in the car all the way home.  Who knew that he knows the words to Madonna's "Star light, Star bright.  First star I see tonight..."  He waved his hands in the air back and forth, back and forth in his little spot in the very back of my van.  The 10 year old friend of my daughters who was coming home with us for a quick play date astutely observed that Josh was very happy.  Truly, my son was a complete delight in that moment, a profound treasure.

Minutes later, the sun went down on my affections for my beloved.  I lost track of Josh for a few minutes as I was shifting into "getting people headed toward bed" mode.  My girls came home from piano, swimming and choir with many stories, requests and needs.  The world series was on TV so that also snatched up pieces of my fragmented attention.  As I was battling dishes while serving up placating slices of cake,  in the corner of my eye I saw that Josh's bedroom door was open and my bedroom door was closed.  I knew in an instant that he was not hiding out in his room but mine.  My mommy-intuition told me that something was not right.

I opened my bedroom door to see that Josh had found the pen next to my bed that I had been using to journal earlier today.  For some reason, my delightful treasure of a boy had chosen to draw all over several pillows and my brand new duvet cover.  How he had managed to draw so much in so little time I do not know.  Maybe he had thoughts or feelings or energy that he needed to get out.  He was a happy little soul, clapping and laughing, like someone who had taken a satisfying artistic dump on my bed.  

I could feel my head and my extremities tingling with the stress of the moment.  Of course, that was exactly the moment that my girls chose to have a conflict and their friend's dad was due to pick her up at any moment.  I made it very clear that they all should steer clear of Mommy for a few minutes.  

Later, at "Second Snuggle", the time I have a private chat and prayer time with each child, my daughter Hope asked me why I had been so upset.  

"Hope, pillowcases I can throw away but I am very sad that Josh ruined my brand new comforter.  I don't know if ball point pen comes out and king sized comforters cost a lot of money."

Hope looked squarely at me and said, in her very 8 year old, Hope way, "Mom, you are too concerned with how things look.  Josh's designs look pretty.  A lot nicer than your boring old comforter.  You should be happy that he drew on it."

I was tempted to just scoff and dismiss what she said because she has no idea about how hard it is to maintain a household with a kid like Josh living in it.  But in a little corner of my heart I wonder if she's speaking some truth.  Maybe there is art in mess and some of the most beautiful art is found in the interaction between homeless people and children with developmental disabilities or in shower heads on pillowcases.  Maybe it is worth pausing and taking a look at things that autistic people draw on pillows and duvet covers.  I still think that I'm too uptight of a person to truly appreciate beauty in the midst of mess but I'm trying.

Disney Magic Interrupted

I've noticed that the magic moments in life are only magical if they are framed and taken out of the greater context.  For example, this photo of my daughter Hope and me captures a truly "Disneyland magical moment".  Leaving sister Anna and Daddy on Main Street to nab a good viewing spot for fireworks, Hope and I raced to the back of Fantasyland to take in the "It's a Small World" ride.  The day we had chosen to be at Disneyland happened to be the first day of the month-and-half long holiday season in the Magic Kingdom so Small World was decked out in holiday lights and featured some special outside shows while you wait.  Our expected 25 minute wait was cut short when they opened a new loading line, allowing us to get right onto the coveted front seats after standing in line for only about 5 minutes. Yes!  Hope had already been on this ride earlier in the day with her dad so her fear of the unknown had melted away and her enjoyment of the ride was exponentially greater.  She jabbered on throughout the whole time guiding me through all of her favorite parts.  (It turned out that every room was her favorite room.)  As we snuggled together and took in the sights, Hope sighed and said, "I love you, Mommy."  It was a scene straight out of parenting heaven or a Disney advertisement.

Soon after we exited Small World, the fireworks started.  We watched them from where we were, which was not a bad location, although not the supremely desired "right in front of Sleeping Beauty's castle" spot.  It was Hope's first time actually seeing live fireworks as we've never let our kids stay up long enough to watch them in July.  They were pretty marvelous to behold, filling us with a sense of awe, beauty, power and just the right amount of fear, sort of like a really good experience of God.  As the fireworks show came to an end, the Small World mall starts to "snow" little snowflakes made of some sort of soap-like substance as the song "White Christmas" and the sound of jingle bells were heard throughout the park.  Hope was absolutely elated, her delight expressing itself in a twirly dance as she caught the little white bits of joy her hands.

Magical, right?

Yes, except for the fact that a few hours before this magic moment, I almost threw up in the midst of an  everlasting, claustrophobic line of people at the Jungle Cruise attraction and had to lay on a bench on Main Street in the fetal position for 2 hours while Alex and the girls went around together.  Alex, Hope, and Anna had had a bout of stomach flu or food poisoning a few days before our trip and, while it looked like they had completely recovered (enough to down several hand dipped corn dogs each), I feared that maybe it was my turn to have a tummy problem.

Disneyland is not for the faint of heart.  It seems that moments of irritation, being overwhelmed and snapping at the ones you love are givens at some point in a long day in the Magic Kingdom.  During my fetal position rest time, I overheard many a parent completely losing it on their beloved children.  I heard many a child having complete thermonuclear meltdowns even though they had been given $15 balloons to hold and larger than life sugar-based snacks.  Disneyland may be called "the happiest place on earth" but it's also a place where the dark side of the human heart leeks out at some point or another.  We were not immune to that reality.

And the clincher was getting a text message while I was watching Hope dance in the manufactured snow from Josh's caregiver (back at home) that Josh was spiking a fever.  Subsequent texts and phone calls confirmed that not only did he have a fever but he was throwing up as well.  As I've written in previous blogposts, this can mean emergency hospitalization for Josh if he is not able to keep his meds down.  I immediately knew that it was not an option to let my carefully organized "Josh care team" deal with this level of complexity without me there so I caught the first flight that I could and returned home the next morning.  I left Alex to shepherd the girls through the second day of our Disney adventure.

A part of me is tempted to say to God, "Really?  It seemed like such a good thing to take this vacation with just the girls.  I thought through this trip from about a billion angles.  I spent about 50 hours prepping for this trip.  There are seven pages of instructions that I typed out and posted on my fridge for people to use as they take care of Josh.  Of all of the days that Josh could have a fever and throw up, he has to do it at the end of our first of two days at Disneyland?"

But you know what helped my heart?  I came home to this.

My deep thought of the day is that if you want to experience joy and wonder, you can't expect it to come on a full day of complete perfection and happiness.  You have to accept that it will be a 3-7 minute snapshot in the midst of the realities of normal life.  It will be a twirly dance in magical snow an hour after laying on a bench in the fetal position and a few minutes before hearing that your other child is seriously ill and you need to get your butt onto the next flight home.  That's how most moments of joy comes in this world, in small packages.  If you focus on the negative stuff, you will never savor the good stuff.

I don't know the full meaning of why our vacation went the way it did but I do know this:  I love this boy and I would do anything for him.  I'm glad that I came home and we are having a quiet, restful day together.  The fever and vomiting are gone but he's clearly tired and needy.  I'm feeling tired and needy too and I'm not sure I would have been able to keep up with Alex and the girls on this second day given where my stomach is at.  Snuggling with Josh on my bed is also a magic moment and it's the one I've been given for now.

It's Not Fair . . . but It's Going to Be Ok

"It's not fair!"

That was the absolute last time I could bear to hear that phrase today.  I couldn't stand the sound of those three supremely annoying words.  It had become a constant mantra around our household, like a breath prayer to an unjust authority (me).  I instituted a new rule on the spot.  Those who utter that phrase of abomination will have an automatic time out; a long, serious time out.

I suppose our situation is rather well set up for people to be sensitive to the injustice in every interaction.  I have two super competitive girls who are less than a year apart.  One is adopted and one is biological.  They are both external processors.  They compete and compare about everything. . . out loud. . . usually with a whiny voice.

"Can I sit behind you, Mama?"
"She got more mac and cheese!"
"Why doesn't Anna have to take Benedryl?"  (Because she doesn't have a rash, Hope)
"I read that book first!"
"Her carrots are smaller than mine!"
"You spent more time snuggling with her!"

Little statements made by little girls were killing me like a million paper cuts.  It especially makes me crazy on days where I am facing the constant hurricane blast of the many needs of the little people in our household.

Tonight at dinner, the complaints were fast and furious.  Hope came up with three things that struck her as highly unfair in rapid succession.  I took a deep breath and continued doing dishes.  Then I decided to go for it.  I used the "Special Needs Card".

"You know, Hope, I struggle with feeling like things aren't fair too.   Other moms have sons who are normal and can do normal things.  Sometimes I feel like it's not fair that Josh has special needs and other kids don't.  Sometime that feels really unfair to me.  But you know, I realized that it's going to be ok.  God gave me Josh and he's the perfect boy for me and for our family and we love him, right?"

I am not kidding you but she took about 15 seconds to think about it and she said, "You know, you're right Mommy."  And then she went and got herself some water, took her dishes to the sink, and buried her nose back into her book.

A strange, quiet calm settled into our house for just a few minutes.  I stood there in grateful awe that the conversation seemed to have had a good effect.  Then I turned my head to see a naked Josh coming to me.  He had gone to the bathroom and attempted, quite unsuccessfully, to wipe himself.  Back to work, Mommy!

------------

An addendum:

Later this evening, while I was giving Hope a bath, she asked me, "Mommy, why did God give you a child with special needs?"

My brain was running on low by this time of the evening so I absentmindedly said, "Uh, maybe God thought that I could handle it" while I concentrated on shampooing her head as quickly as I could.  "Why do you think God gave me a child with special needs, Hope?"

She thought about it and then said, "I think it was so you could feel His love by loving Josh."

"Wow, Hope, that's a good answer."

"Mom?"

"Yes, Hope."

"I think my answer was better than yours."

"Yes, I think it was too."