Sunday, December 29, 2013

Lipstick

How could I refuse?  The father of the kid who was hosting my girls for a play date offered to make me a fresh cappuccino on his shiny, new machine that appeared to do hundreds of beautiful things with coffee. They were all hanging out in their driveway with another family who was visiting them when I drove up to pick up my girls.  The father introduced me to his friends as "the mom of the family that we were just telling you about, some of our favorite people!" Dinner was already in the crock pot at home.  We had only one errand left and plenty of time to do it.

"Sure!  I'd love it!  Thank you."  I accepted his offer with gusto and gratefulness.

I looked back at my van at the bottom of their driveway.  I could see from the window that Josh was happily listening to music on headphones.  I left the side door open just in case he needed something or got unhappy.  My girls were elated to have a few more minutes to play with their friend.  The visiting family had just moved to my home town in Oregon so we had a lively conversation about favorite restaurants and pubs in the Portland metropolitan area.  It also turned out that this couple had gone to the college with my husband.  A few minutes turned into forty five with the assistance of a second coffee drink, the sharing of humorous anecdotes and happily occupied children.

Finally, I got my girls and my well-caffeinated, socially satiated self back into my van and headed to the library.  As I unloaded my three children, I realized that the contents of my purse were scattered all over the floor of the back half of my van.  As I picked everything up, I saw that one of my lipsticks had been opened and the contents almost completely missing.  Someone had eaten it like it was a soft, shimmery piece of candy.

I looked at my eldest child and saw that he had Estee Lauder #61 Pink Parfait all over his face and hands.

"Josh!  Did you eat my lipstick?"  I demanded, beginning to panic.

"Yes."  Josh responded, without shame or affect.

"Joshua.  We do not eat lipstick!  Mommy says, 'No eating lipstick!'  What is wrong with you?"  I began to rant at my child who had very little capacity to receive my lecture.

Josh must have been searching for gum or candy in my purse while he was waiting for us to finish our little bonus time in the driveway.  My lipstick was almost new so it looked like he had ingested quite a bit of it.  I had the faint memory of hearing something on the radio recently about how make up was actually toxic.  I was so frustrated with the thought that Josh's habit of eating non-food items was back.

And then I blurted words that should not come into a Mom's head much less out of her mouth.  "God, Joshua!  Why are you so weird?!"

The girls immediately jumped to Josh's defense.

"Well, you might look like you are eating it when you are putting it on, Mommy." said one of them.

"Mommy, that is not a very nice thing to say." said the other, perfectly embodying a corrective tone which I am sure that she picked up from me.  "We don't say things like that."

They were completely right but I wasn't ready to repent.  I was feeling too scared that Josh was going to die and too guilty that I had left him in the car for so long while I had indulged in spontaneous coffee and adult conversation.

I sent the girls ahead to go look for books in the library while I called poison control.  Of course, once I got through to poison control, they put me on hold for about a century.  I put on my headset, wiped off my son's face and scooted him into the library while I waited to talk to a real live person on the phone.  The girls had almost finished checking out a huge pile of books and DVDs each when the person came on the phone.  I explained our situation and asked him what I should expect.  The man told me that, although he doesn't recommend eating an entire lipstick in one sitting, Josh was not likely to have immediate dire consequences.

"The worst thing that you can probably expect is some diarrhea."

Just as the man from poison control was saying this, I looked over and saw that Josh had his hands on either side of a desk.  His back was bent forward ever so slightly and he appeared to be bearing down and pushing.

"Oh my God.  Girls!  Time to go!  Come on, Come on!  Josh, do you need to go to the bathroom?  Are you pooping?"

"No." He said, simply, with no understanding of why I was such a basket case.  He then calmly walked out and found his way to the car, sat down, and buckled himself in.

"Want music."  He said, as if to change the subject.

When the girls had landed in their seats, I took a deep breath and apologized to them about my inappropriate outburst and asked if we could just take a moment before we moved on.  They were already buried in their fresh books.  Josh was calm and happy with the radio on.

I held my head in my hands and poured out my fears, frustrations and guilt to God.  I desperately needed to come down off of the happenings of the past hour.  I asked if He would speak to me and give me some perspective on the situation.

Do you know what I felt like God said?

"Look at your purse."

"O-kay"

 I looked at my hot mess of a purse and this is what I saw:

-lots of Kleenex and napkins both old and new
-6 pens
-4 small toys
-many loose, crumbling M & Ms
-my wallet, bursting with random papers and receipts
-more random papers and receipts loosely floating around
-several small pieces of children's art work
-several plastic items of no discernible identity or origin
-12 lipsticks

Yes, I counted twelve lipsticks or lip glosses in my purse.  And I'm not even a person who wears much lipstick!  Why do I have so much lipstick and, for that matter, all the rest of the stuff?  Because I'm just someone who has an absolute inability to clean out my purse.  It's one of those random, weird things about me.  Try as I might to have an ordered life, you can pretty much be sure that my purse and my desk are going to be utterly chaotic at all times.

Driving home, I realized that the interpretation to the parable of my purse is that we are all weird in unique ways, big and small.  We all have parts of us, our personalities, our choices, things that we do which are inexplicable, idiosyncratic, useless and even counterproductive.  Oftentimes, we are blind to our own oddness.  But part of the meaning of family and friendship is that we love and accept one another despite our unique weirdness.

Why is my son so weird?  Today, that is not the right question.  The right question is "Am I going to love and accept him for who he is, weird behavior and all?"  What helps me to answer that question is another question.  "Do I realize that I am fully loved and accepted for who I am in all of my own weirdness?"






Tuesday, December 24, 2013

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.  



Saturday, November 16, 2013

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.

Thursday, October 17, 2013

Clipping Nails and Trusting God


"Today's the day," Alex announced as we were getting ready for school.  "It's time to cut Joshie's nails."

My daughters and I groaned in unison.  We all hate it when this has to happen.  When we engage in the massive challenge that is cutting my son's fingernails, we have to shut all of our doors and windows first because he screams like we were torturing him. I have thought about visiting our neighbors and interpreting for them what is going on so they don't call Child Protective Services but I figure, they already know Josh and have heard plenty of his strange sounds.

This is a child swallows 12 pills every day, gets an intramuscular shot every morning, gets a blood draw done every month and handles all of these things maturely and peacefully, like they are just a fact of life.  When we go to the pediatrician's office to get flu shots, it's my autistic child that I am least worried about.  Josh obeys my requests better than any other child that I am currently parenting.  He even sometimes does his chores without my having to ask!  Generally, these days, Josh is a sweet, compliant kid until we take out the nail clippers.  Though legally blind, Josh can see the little silvery tool from a mile way and he immediately starts yelling "NO! NO! NO! NO! NO!" Suddenly we become evil, untrustworthy parents who are intentionally trying to inflict great pain on our child.

But what can we do?

The thing is, Josh's nails grow faster than any one's in our household.  Maybe it's the growth hormone shot that he gets every day.  You blink and his nails look like Marilyn Manson's.  

Also, Josh has no qualms with putting his hands anywhere then into his mouth or nose.  Josh went through a season where he loved to caress public garbage cans (where he would find pre-chewed gum stuck to those garbage cans and stick it in his mouth).  A few months ago, Josh and I were walking to pick my girls up from their school.  As we walked across a grassy area, and as I was distracted by chatting with another parent that I knew,  he felt that he needed to scratch his groin so he just pulled his pants and underwear down and did what needed to be done.  By the time I reached him and quickly pulled his pants back up, he had already moved on to picking his nose.  He's a strange kid but I love him.  

I have Josh wash his hands a lot but suffice it to say that keeping Josh's nails trimmed is part of what we have to do to minimize the grossness of our lives and of our household.  

And let me tell you that we've tried it all: cutting his nails while he sleeps, clipping after long bath, promising great, sugary rewards. Nothing works.  At some point, we have to bite the bullet and cut his nails.

Now, the level of strategy that this endeavor entails might rival any NFL game or great, historic battle.  First we discern which room in our house has the best light.  Then, my 6 foot 3 inch tall husband has to put his strength into holding him down without hurting him while I try to cut with speed, agility and accuracy.  Josh is 107 pounds now so he's quite strong.  Alex and I end up often sweating, usually swearing.  Sometimes we go the extra mile and do the toes but the priority is the fingernails.

Hope usually ends up weeping because defending her brother is one of the strongest impulses in her 7 year old life.  She knows that we are not hurting him but she can't bear to hear him scream.  When Josh's screaming gets really bad, Hope gives us the stink eye and tells us that we are bad parents.  Anna goes into another room and buries her head into a book.  I picture my girls having to debrief this scene with a therapist years from now.  I'm just trying to do what's good and healthy for my son but it just creating so much tension and conflict for everyone.  

Sometimes I wonder if this is what God experiences with me when he is trying to wrestle me into some sort of cleansing or pruning.  As I look back on my life, there are so many things that God has had to regularly strip me of so that I can have a healthier life.  Toxic relationships have had to be severed.  Bad patterns of negative self talk has had to be regularly clipped off.  Addictions have had to be cleaned up.  I know that, were it not for God's loving intervention, parts of my life and soul would be blacker and grosser than the inside of Josh's nails when it's way past time for clipping.

And how have I responded?  Sometimes, I feel like I writhe and scream as much as Josh does.  I yell at God that it's going to hurt. I ask why He is doing this and I accuse him of being a bad, bad God for doing these things to me.  Unexpected transitions, unmet expectations, aberrations from the usual societal norms, these things have all felt scary and threatening to my human sense of what is safe and okay.  Yet there are times when God has drawn near, held me down and said, "Sweetie, it's time.  We're going to do some cleaning up today because I love you and I want good for you."

Strangely, this morning we experienced a true miracle.  Alex got out the clippers and Josh remained calm.  It was clearly still hard for him.  He still tensed up when we started but, as the picture above shows, it was the first time in years that clipping nails was a one parent job.  There was no screaming, kicking or having to hold him down.  He just sat in a chair like a normal person and waited until the unpleasant task was finished.  It feels like Josh just woke up one day and decided to trust us.

I wish I could experience this type of miracle in my own heart towards God.  When God does something in my life that I don't understand or that I fear, I want to experience a supernatural, miraculous ability to trust that He has my good in mind and that He loves me.  I want to stay calm where I used to resist.  I want to be able to sit still and let my Father who loves me come close to me and help me with my personal spiritual hygiene, no matter how yucky or intimidating things may be.  

Wednesday, October 2, 2013

Feeling Secure


A few weeks ago the kids and I happened to visit a park in town that we hadn't been to in a while.  To our surprise, the city had replaced one of their regular swings with an adaptive swing, one intended to give more support to a child, likely one with some sort of special needs.  Josh found his way into it and immediately started smiling and laughing.

His sister pushed him for a while and when she stopped, Josh said, "Want more push."  Between his two sisters and I, we must have pushed him on that swing for at least 30 minutes.  Each time we stopped, Josh asked, "Want more.  Want more." He requested with such a sweet cackle/ giggle that we couldn't say no.  We were pushing him higher than he's ever swung before and he was just loving it, laughing loudly like a lunatic the whole time.  

When we finally stopped to rest, I realized that, while Josh loved swinging when he was younger, he hasn't been a fan of playing on swings for quite a long time.  We have a park near our house that only has regular swings and he never wants to be on it, preferring to sit in the sand and watching the sand pour through his fingers instead.  It's been years since I've pushed this kid on a swing.

Why, then. did Josh want to swing on this swing so much?  And why was it making him so darned happy?  Why was he willing to take a risk to let us swing him so high?  It dawned on me that, due to the shape and design of this adaptive swing, Josh felt secure in it.  He is quite sensory seeking so he loved the proprioceptive input that he got from a swing. However, because of his low tone and poor core muscles, I think that he feels insecure about being swung and having to hang on for himself.  But with the extra support of this adaptive equipment, he could relax and just give himself to the experience of swinging.

This observation made me think about how there might be other ways that Josh might be willing to take new risks if he had more support, specifically, a better sense of feeling secure.  Might Josh be willing to roller skate some day if we figured out a situation that worked for him?  The very thought of it makes me laugh out loud!

I also found myself thinking about some of the ways that I might be willing to take new risks or enjoy a certain activity if I had more support in some way that I feel insecure.  For example, might I do more writing if I had the equivalent of an "adaptive swing" in my life?  Could I fly higher in some way, laughing as I went, asking God or my community or a mentor that I "want more push"?

How about you?  Is there some way that you have been avoiding something wonderful because you feel insecure?  How might you seek out an "adaptive swing" experience?


Friday, September 27, 2013

Josh Has a Friend


Never, in his 11 years of life, has my son been even remotely interested in having a friend.  Josh has always been more of a "parallel play" kind of kid rather than someone who could relationally interact with his peers.  Actually, Josh doesn't really "play" in the traditional, imaginative sense so it's always been more of a question of whether he'd tolerate being around other children. On any given day, it's hit or miss whether he can even name which of his sisters is Hope and which is Anna.

Of course, Josh has lots of people in his life.  Thanks to his school, our church, our extended family and a gazillion therapists and service providers, there are tons of people who appreciate Josh, care for him deeply and work for his growth.  He is very bonded to his dad and me.  When he is hurt of upset, he will say, "I want Mama."  When he wants to snuggle, he will ask for his dad.

But he has never had a friend. . . until now.  Sort of.

This morning, as I was helping Josh into his seat on the school bus, I realized that he always chooses to sit next to Vincent, who is a 7th grader in Josh's special education home room class. There are plenty of empty seats and even empty rows but he always finds this same kid, sits down, and waits for me to help him with his seat belt.  Maybe he feels safer with Vincent than with the other kids, knowing that Vincent is less likely to make random sounds that are sensorily challenging for Josh?  Maybe he just likes Vincent.  I don't know.

I don't know his official diagnosis but Vincent seems like he's also an autism spectrum kid but with more verbal skills and physical agility than Josh.  The other day, when Josh plopped down next to him, Vincent put his arm around Josh and said to me, "Josh my friend."  This both made my day and made me want to cry at the same time.

Yesterday, I observed their class while they were doing some outdoor play in the grass near their classroom for a quick break.  Several of the boys were kicking a ball around.  Vincent kept insisting on kicking the ball to Josh despite Josh's complete disinterest in receiving, kicking or chasing the ball.  Josh was more engaged in flicking his fingers in front of him and making humming noises but this didn't deter Vincent one bit.

 "Josh! Josh!  Here, Josh!" Vincent enthusiastically exclaimed, requesting, but not necessarily needing, reciprocity.

Noticing this small sprout of a "friendship" between Josh and this other boy, who is a peer, touches me.  I've always been sad at the thought of Josh not being able to develop friendships in a traditional way as, in my world, friendships are one of life's great pleasures and God's great mercies.  To me, life feels barren without the sense of being seen, liked, chosen, and enjoyed by someone who is like ourselves in many ways.

What does it mean for a child who has autism and intellectual disability to experience friendship?  I don't know but, today, I feel filled with hope by seeing this little connection.

Wednesday, September 4, 2013

Vacationing Without Josh

My husband and I were standing at the beach with our arms around each other watching dolphins frolic in the water.  Our girls were entertaining themselves for the seriously long time, playing nicely together as if they always behaved like sisters who are best friends.  There was just enough sun and breeze to make you feel alive and alert.  It was a marvelously beautiful day.

Alex let out a mournful, guilty sigh.

"What's wrong?" I asked him.

"I feel relaxed," he said sadly, looking like a big dog who had eaten the Sunday roast but knew enough to feel conflicted about it.

I knew what he meant.  It was the first time we had ever done a special family day trip without Josh and it was so nice.  One on one parenting is a heck of a lot easier than the zone defense that we have to use when we have Josh.  It's usually, "You take the girls.  I'll take Josh."  The girls are easier to herd together and Josh needs the full attention of one adult.  Talking to each other when we are anywhere with our three kids is almost always out of the question.

We were taking a day at the beach with just the girls because Josh had summer day camp that week but the girls did not.  Alex has Mondays off so we took a traffic-free drive to the beach, played at the beach for several hours, had a lovely lunch together then went strawberry u-picking.  There were hardly any ripe strawberries but it didn't matter because the girls had fun running up and down the fields while Alex and I took in the landscape and caught up about life.

How can having such a lovely, restful day make us feel so bad?

Because part of why we were able to relax was that Josh was not with us and this felt strange.

We were not constantly worried that a nearby child's cry would set our son off in a tantrum.  We were not watching to see if he ate sand or other non-food items.  We were not worried about him suddenly declaring that he had to go to the bathroom and us needing to find one OR ELSE.  We had come to this place not making any mental notes about where the nearest hospital was just in case he had a medical emergency.

No, we were just with two typically developing, fully toilet trained, children who could occupy themselves through imaginative play and reading books.  They were not guaranteed to be well behaved at all times but you could at least reason with them.  Typically developing children have a much wider array of things that you can threaten or bribe them with.  This is useful on vacations.

Being with just Hope and Anna felt so easy compared to being with all three of them.  Alex and I found ourselves surprised by our ability to wind down, even with our two exuberant, chatter-bunnies in tow.  At least they were joyful, self-entertained bunnies.

A few years ago I met with a woman who has an adult son with autism.  When I solicited her advice for long term family survival, she told me one thing:  take vacations without your child with special needs now and then.  I smiled, nodded politely and thought to myself, "No way am I ever going to do that."

The thought of going away and enjoying family time without the child who needs me the most was unfathomable.  How could I truly rest knowing else that someone else was watching Josh?  We do date nights without our kids and even overnights sometimes but it seemed so strange to have "family" time without Josh.  What would that be saying about his presence and role in our family?  That he wasn't welcome?  Or truly one of us? That he was too much work to be included?

Well, now that Josh is 11, I have reached the point of seeing where my friend was coming from.  This fall, the girls have asked that we go to Disneyland (for the first time) rather than having birthday parties.  Realizing that Disneyland would be an overstimulating hell for Josh (and that he'd be saying, "I want car" within the first expensive hour) we have decided that we are going to go without Josh.  I am going to embark on the gargantuan task of arranging childcare and training a number of different people in our community to be with Josh so that the rest of us can be gone for 4 days.

And what are we saying in making this choice?  I am saying that it is okay, even good, for us to have family time without Josh sometimes, especially if we are going to do something that he would not enjoy anyhow. Beyond that, I am realizing that doing well in the long marathon of raising Josh means taking respite times away from him, as in individual parent, as a couple, and as a family.  This is a tough and unexpected part of the journey but I feel that I'm being led forward by a sense of peace and conviction. I'll let you know how it goes.


Tuesday, July 23, 2013

My Son's Flat Nose


My sister and I happen to be fair skinned for Korean girls.  Since we grew up in the rainy state of Oregon and rarely saw direct sunshine, we despised our paleness, as it seemed, to us, a sign of poverty and unstylishness.  Living in the Pacific Northwest during the height of the 80's tanning salon fad we were always covetous of the "I can afford to vacation in Hawaii and lay around in a pool or play tennis in the sun" look that the people around us were always seeking, authentically or otherwise.

When our family visited Korea when I was in the fourth grade, my sister and I were shocked and confused to experience that our pastiness was actually held in very high regard.  Random people that we met at restaurants would comment with delight about how "wonderfully white" our skin was. One time, an older lady who happened to be with us in an elevator at a department store reached out and lovingly stroked my face, as if to confirm for herself that I, indeed, had such a fabulously light complexion. 

It was around that time that I realized that there was a whole set of physical attributes that my Korean culture and extended family affirmed; light skin, big eyes, high cheekbones and a high, narrow nose. It took me a few more years to realize that these are not the typical characteristics of a traditional Asian face but, rather, a Caucasian face.  And yet, my culture affirms and delights in the attributes that are not common or natural to our own people.  South Korea now has the highest number of cosmetic plastic surgeries in the world per capita overtaking Brazil as the plastic surgery capital of the world.  One in five women in Korea have undergone some sort of cosmetic procedure, which have become popular graduation gifts from students' parents.

Not only do we affirm those who have more Caucasian features, we look down on those who have features that are more commonly occurring to Asians.  Dark skin, slim eyes, broad cheeks, and flat noses were seen as undesirable, even ugly.  Ladies encouraged moms who gave birth to "unfortunate" children with flat noses by saying, "Don't worry.  It will grow into being more raised. Just give it little pinch every day."

As I look back to my childhood and youth, I am astounded and ashamed at how deeply I had internalized that prejudiced paradigm of beauty.  I have a memory of going to a dance in high school at a town about an hour from my hometown.  I was one of a handful of Asians in my school so I was quite used to being one of the only Asian Americans around.  Somehow, there was a group of Asian boys at this other high school and as soon as I walked into the room with my blonde haired friends, we were aware of each other.  Eventually, one of them came over and asked me to dance.  I was self conscious for several reasons.  I was a teenager and, thus, spent most of my time being painfully self-conscious in general.  Also, dancing with an Asian boy made me aware of being Asian, which made me feel self-conscious.  But the most important factor in my discomfort was that this boy was of Southeast Asian origin and had the characteristics that many Southeast Asians have: dark skin, a shorter build, and a flat nose.  I was so repelled by his looks and so uncomfortable with the situation that I quickly made an excuse and walked away.  Also, he had put his hand on my butt.

Now, as a mother to a boy with Southeast Asian heritage, I reflect upon my own culture's obsession with western standards of beauty and my own internalization of those values and I grieve.  I want to shake off those messages that you have to look western to be beautiful like a dog shakes off excess water after a bath.   

I'm so glad that Joshua's lack of awareness about the subtleties of cultural values prevents him and protects him from taking in inappropriate and incorrect messages that he is inferior because he has a broad nose and dark skin.  And trust me, his nose is flat, flat, flat.  My husband and I sometimes joke about how we wonder if there is any cartilage in there at all even as we are admiring how stunningly handsome our son's face is.  Now, I see how perfect Joshua's flat nose is on his face.  And in the summertime, Josh's skin turns into a beautiful caramel macchiato color that is, on him, glorious.  To a mom who adores her son, everything about how God made his appearance is a thing of wonder and artistry.  In this way, I believe that God is using "mother love" to transform me to see the world more rightly.

Recently, in his response to the Trayvon Martin/ Zimmerman case ruling, President Obama exhorted Americans to be "a little bit more honest and ask yourself your own questions about, am I wringing as much bias out of myself as I can?  Am I judging people as much as I can, based on not the color of their skin but the content of their character?" I think that what he is getting at is that racism and prejudice is not a binary reality.  It's not that some people are racist and some are not.  The truth is that we all have ways that we've been influenced by fallen beliefs that do not reflect the heart of God and of righteousness.  For me, trying to walk in rejection and repentance of  my own culture and upbringing's definition of beauty is part of that "wringing out" process.



Tuesday, July 16, 2013

The ABCDs of Summer Special Needs Survival

Well, summer school is over and so is our week of family vacation.  Ahead of me is 33 potentially tedious and stressful days of keeping my kids occupied before school starts back up.  Although the girls still have some day camps, Josh is at home with me all day for most of those days. This morning I had a momentary flash of panic.  How am I going to keep my sanity while juggling the kids at home during this second half of summer?  How can I arm myself for the unavoidable moments of conflict, stress or boredom that are likely to present themselves?

While searching parenting websites I saw something that both amused me and gave me hope.  It's called the ABCDs of a parenting bag of tricks for avoiding a meltdown or easing a tense situation.  A for amuse, B for  bribe, C for comfort and D for distract.  

I was thinking about how I can apply this with a child with special needs.

Amuse.  It's tricky to know what will amuse Josh.  He often just starts laughing and it's hard for me to know why.  It's hard for me to share his joy or amusement because it often just seems to come from no where.  Also, Josh doesn't seem to care if someone is laughing with him.  Still I do know two things that amuse Josh to no end: a brisk breeze and music with a good strong beat.  I am going to spend more time walking with Josh along the Bay and I'm going to get out our electric fan.  Also, I need to find more clean rap stations on Pandora (if that exists).  These things are not technically "funny" but they make Josh laugh so I think it counts.

Bribe.  Motivators are often difficult to think of for kids with autism.  They are simply not motivated by the typical things that kids want like toys, money, verbal affirmation or the promise of anything that takes place more than 2 minutes from that very moment.  Over the years, I have had to get very creative to even be able to think of things to bribe Josh with.  Sugary food always works but I don't want Josh to gain a lot of weight so I need to think ahead about what else I can use to bribe Josh.  Thus far I can think of the following:  1)  watching YouTube videos of people installing shower heads,  2)  being wrapped up in the comforter on my bed and being squeezed and 3) anything having to do with playing with water.  When the kids get overtired or bored or stressed, I have been known to just march right outside and spray a big spring of water high up in the air and let my fully dressed kids get soaking wet. We call it "carwash" but it's more like kidwash.  It seems to me that they key to bribing well is to think ahead about what are things that you'd be willing to use as bribes that you won't regret rather than turning to something in the moment that you don't really want to use as a motivator.

Comfort.  Josh has always been the child who is most likely to want to snuggle.  However, lately, he's exhibiting more pre-teenish desire to be physically independent.  To my dismay, he often doesn't even want to hold my hand while crossing the street!  Sometimes, when I snuggle in with him in bed he will say, "Want Mama to go away." This is very sad for me.  Without physical touch, how do I connect with Josh?  Strangely and fortunately, there is one thing that comforts my son to no end.  Like many things in the autism world, it's a little bit weird.  Josh likes to sniff my hair.  Yes, I do take showers and I don't think my hair smells any different from anyone else's hair (I think) but, for some reason, when Josh is stressed, one of the things that comforts him the most is being able to stick his face right up to my long black ponytail and taking a couple of good whiffs.  There have been many an anxious moment at a busy Safeway where Josh suddenly announces, "Wanna smell Mama's hair!"  And if I'm desperate enough, I let him do it. Yep, right there in the middle of the grocery store or whatever.  Odd it is, and we will definitely have to fade this behavior at some point but, for now, it comforts my son and I need this tool in my pocket to survive the summer.

Distract.  In order to survive any outing with Josh, one must have lots of music. . . . car stereo, ipod with headphones, chimes on one's cell phone, whatever.  If you ever get caught in some situation without music, you must distract Josh by singing one of his favorite songs, the louder the better.  The other day we were waiting for my daughter's swim lesson to be over and Josh was just on the edge.  He started whining loudly and demanding to go home so I had to sing "Party Rock Anthem" and dance with him in circles under a tree at the park.  Instant distraction!  It bought us the 6 more minutes that I needed for Anna's lesson to finish.

Reflecting on these ABCD's made me realize that the main point of them is to take it easy and to not let the situation spiral in a negative way.  I also need to think ahead so that I can amuse, bribe, comfort, and distract myself at times so that I can keep it mellow and not buy into being too stressed out, tense or angry as we walk through the second half of summer.

What about you?  What's in your parenting bag of tricks so that you can have a good rest of the summer?



Saturday, July 6, 2013

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)




Tuesday, July 2, 2013

Hope's Story vs. Josh's Story


The weather topped 100 degrees but we were still having a blast!  Every year the regional office of our adoption agency hosts a "Family Fun Day" at a ranch which belongs to a family that supports the organization.  Our kids get to enjoy horseback riding, snow cones, face painting, a BBQ lunch, jumpy houses and a ton of other fun kid activities.  Josh enjoys it because we let him consume as many snow cones as he wants.  By the end of the day Josh becomes a happy, sticky mess!

This year, at lunch, Alex had an interesting conversation with the woman who organized the event, who is also in charge of public relations.  She enthusiastically told us that Hope's birth mom had come to share her story at an agency event recently and that it was so touching to hear more about our family.  Our agency has invited us to share through several venues and platforms about Hope's adoption story.  

There has been a great deal of interest about her story because we have a very successful open adoption situation with Hope's birth mom.  Miranda visits us three or four times a year and has a very positive relationship with Hope.  She is a very mature and gracious person whom we trust to be a good presence in Hope's life (and the lives of our other kids as well).  She's also a great voice for Bethany because she's thoughtful, articulate, poised, beautiful and has had a profound spiritual revival in her life through the process of choosing to give birth to Hope and place her for adoption.  We have been so glad that our story has been used (by the organization and by God) to encourage others about adoption in general and about open adoption specifically.  Below are some links to some of the content that has been produced about Hope and Miranda.  


However, Alex found himself sharing with the staff person from our agency that it was a little sad for him that, while Hope's story has been told very publicly, there has not been much interest in Josh's story.  Now, it's rather obvious why an adoption agency might not want to highlight Josh's story.  His is a story that says to prospective adoptive parents, "you might adopt a child hoping that he would be healthy but then they turn out to be a severely disabled, medically complicated person".  This is not a adoption agency's publicist's dream.  After we adopted Josh, Alex and I used to joke that we'll probably never get invited to come speak at those prospective adoptive parent trainings because our family story would probably scare everyone away!

Not every child gets to have their story put into videos and articles.  Still, the imbalance between the interest in Hope's adoption story and Josh's adoption story is painful for us especially because it's the healthy, typically developing child who gets a lot of attention and the special needs child who gets ignored.  For us, as parents, both adoption narratives feel like stories that should be told and celebrated.  I suppose that it's the conviction that Josh's story needs to be told that causes me to write this blog.  He may be mostly non-verbal and hard to get to know but I believe, with all my heart, that his story is important.    

Surprisingly, the woman listened with an open heart.  She emailed us a few days later to ask if it would be ok for her to talk to the agency's national communications department about doing a story about Josh for their quarterly adoption magazine.  Apparently, it fits right in with a special focus that the organization is launching about adopting kids with special needs called, "Courage to Love".  We told her that we'd be glad to participate!  I feel so touched that the agency is one who is feeling moved to address this topic.

I just got off the phone with a writer who has been contracted to write the story and am looking forward to seeing what kind of fruit this produces.  I'll blog about this more later, hopefully with links to the story about Josh.  



Wednesday, June 26, 2013

Yelling at Your Kids


Ok, you parents out there, are there any of you who never yell at their kids?  That was a rhetorical question.  If that's you, I don't want to know.

Actually, there was a time when I did wonder how mature, thoughtful, spiritual people could ever yell at their kids.  When Josh was about three years old, I remember talking to a fellow mom who was really struggling with yelling at her kids.  She was a little depressed and her husband travelled a lot.  She confided in me, assuming that all parents struggle with yelling at their kids, or losing their patience in their own way, now and then.  At that moment, I realized (but didn't say to my friend) that I had never yelled at Josh.  Sure, I cried, I despaired, I stressed, and I yelled at my husband but I never yelled at Josh.  It seemed impossible to yell at a severely intellectually disabled child.  Yes, he frustrated me plenty but he has such an aura of not being able to help himself that I found it easier to not let my frustration out on him.  And not having ever yelled at my only child, it was easy to think that I was just not "a yeller" and never would be.  After all I loved my child and was committed to compassionate, sensitive parenting in a safe, calm environment.

Then I had typically developing children.

My daughters are lovely people.  They are bright, charming and often delightful.  However, typically developing children have "normal" characteristics that Josh just never developed.  They try to manipulate situations.  They experiment with lying.  They speak disrespectfully.  They blame and compete with each other.  It turns out that these are things that take quite a bit of intellectual capacity to be able to do.

I've realized these are some of the things that really push my buttons and cause me to lose my cool when I am stressed. I am definitely no longer someone who has never yelled at their kids.  I don't think I'm a chronic, out-of-control yeller but I definitely could work on my tone just as much as my girls need to work on theirs.

Recently, I've been trying something that seems to be helping me.  I just respond to everything they say with "I'm not sure.  I'm going to have to think about that."  Or I just say, "I don't know."

"Mommy, you promised that we could watch TV!"

"I'm not sure."

"Moooommmm, Hope took my toy!  I want it back!"

"I don't know...."

Jim and Dr. Charles Fey, of the Love and Logic institute, call it "going brain dead" and it's one of the strategies that they suggest to help parents to stay calm in the midst of stressful situations.  They tell you to find a simple, neutral mantra like "that's so sad" and just say it over and over again, especially if your child is trying to draw you into arguing with them.

My girls don't love it when I respond that way but at least I am not adding my own emotional fuel to the fire.  It creates some space and some time for everyone (including me) to mellow out and not argue or yell.  Most times, coming up with a good argument only amps the situation more whereas a statement like "I don't know" slows things down in a helpful way.

I think that it's ironic that what I am finding useful in my parenting to me is to become a little bit like Josh and be intellectually impaired (or at least, disengaged) so that I might be emotionally wiser.  And the truth is, when things are heated, I often really don't know what to say or do.  But I do know that creating a brain break for all of us is a gift.


Monday, June 10, 2013

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?

Wednesday, June 5, 2013

Battling Fear

As I write this, my husband is driving Joshua to the emergency room.  Josh has had a fever off and on for two days but this evening he started throwing up and could not keep his meds down.  Josh has a diabetes-like disorder (called panhypopituitarism) which necessitates that he takes a shot and many pills every day, throughout the day.  If he is not able to keep his pills down, he has to be taken to the hospital so that he can get them via an IV.  Thus, we are not allowed to ever be very far from a hospital.  No camping in the backwoods for our family... ever.

I am at home with my girls, with my cell phone charged and close, waiting for a call.  How am I doing?  I realize as I mechanically do some laundry that I am filled with fear.  Dark scenarios of something really bad happening are shooting through my adrenaline filled brain.  I think about how if he dies tonight, my last interaction with my son will be him explosively throwing up all over me.  Was I compassionate to him in the moment?  Was I mean because I was stressed?  I can't remember.

Why do I go there?  Why does a bout of mere fever and vomiting lead me to thoughts about my son's death?

One reason is that when Josh was first diagnosed with Septo-Optic Dysplasia, his primary diagnosis, we asked a service provider if this was something that could threaten his life.

"Has anyone died of this?" we asked.

The woman was taken aback by our question but answered us honestly. She had recently heard of another young child with Septo-Optic Dysplasia who had passed away because she had the flu, was not able to keep her meds down, and had an adrenal crisis.  It's hard to forget stories like that.

I think that the other reason that I am filled with fear is that all parents struggle with fear about our children.  They are these phenomenally precious, wonderful gifts in our lives and we are responsible to keep them alive (and then some).  Something terrible happening to our children is unfathomable but it seems like there is a role for fear in that it helps us to wake up and forces us to give our best to protecting them.

Yet, no parent can live in fear for the long term.  It makes us crazy, cranky and gives us ulcers.  Ultimately, I think it keeps us from being good parents.  At some point, we have to put fear to bed and snuggle up with trust.  What do we put our trust in?  Right now I am trying really hard to put my trust in a God who loves me and loves my son more than I could possibly imagine.  Secondly, I'm choosing to trust that my husband will take the right steps in advocating for Josh and explaining his really complicated diagnoses to the staff at the ER.  Finally, I am trusting that being a good parent does not depend on my being constantly anxious, perfect and vigilant but in doing the best job that I can do according to who God has made me to be.

Well, okay.  Those are my thoughts for this moment.  Now, I'm going to go back to the mountain of laundry.

Wednesday, May 29, 2013

Being Defensive and Saving the Planet

A high school girl with the biggest blue eyes I had ever seen, accentuated with a massive amount of black mascara, walked over to me with a desperate, serious look on her face. Her ponytail bobbed up and down and she walked over to my car with a quick determination.  I had been on the phone with my mother so I quickly signed off with her and turned my car on so that I could roll down my electronically powered window to see what was the matter.  She looked like she needed my help.

"Excuse me, were you idling your car?"

"What?"  I replied, confused.

"Your car.  Were you sitting here with it on?"

"Uh, I don't think so.  I think I just left my lights on.  Well, I'm not sure. . . Why?"

She took a quick breath and said, with utter conviction, "Because idling cars, especially near schools, is a horrible cause of pollution and it's so avoidable and it looked like you were just sitting her with your car on and I just wanted to ask if you could turn it off if you are going to sit here because, like, I really care about the planet.  I mean, you could also ride your bike to pick up your kids, right?"

In the span of about 2 seconds, the following speech went through my mind.  "Listen Missy.  You have no idea about my life.  Do you know what happens when I walk or bike to pick up my girls at this school in the afternoons?  I will be late to pick up my autistic son off his bus back at my house and he will be a screaming mess and will be hitting himself on his head or biting his hand until it bleeds."

"Um.  O-k.  I don't think I was idling my car . . ." was what came out of my mouth.

Perky-enviro girl and I stood there looking at each other, awkwardly and with unspoken hostility.  We were definitely not connecting.  She asked me to just "keep it in mind"and bounced back across the street.

Yes, I felt defensive.  I was being talked down to by a person at least two and a half decades younger than me.  This girl had taken action on her convictions and, for that, I was a little bit proud of her in the midst of being massively annoyed.  But the larger emotional reality was that she had judged me without knowing anything about the context of my life.  And she started with an assumption that she had correctly observed that I had been idling my car, which I was pretty sure I had not been doing.

This is why judgemental evangelism of any sort does not work.  When people feel wrongly and negatively evaluated, they don't tend to respond well.  Why don't people of conviction understand that?

On a deeper level, I realized that this girl had tapped into a current of guilt in me.  I do actually care about how car emissions are effecting the environment.  I want to be free to walk or bike my girls to school.  I don't want to be ruled by the fear of my son's strange reactions.  Yet, I'm stuck in this ridiculous reality of driving 8 blocks down the street every afternoon so that I can avoid a Josh tantrum situation.  Sometimes I see parents who are biking, who live much further away from our school than I do and I feel sad and embarrassed.  I want to explain to them, as I wanted to explain to this teenager, that I have to drive or else my child with special needs will start his afternoon off with having a big, sad problem coming off of the bus and I just can't have that right now.  So, yes, I feel guilty about driving my girls home from school but I have no good alternative right now.

The other day Hope informed me that we should never drive our car anywhere anymore because we are killing the penguins by using cars.  Her class had been doing a unit on penguins and had talked about how global warming was affecting their habitat.  This was very upsetting to her.  I told her, "Sweetie, sometimes we just need to do what we need to do.  That doesn't mean that we don't care about the earth and about penguins but we need to try to be mindful of things while living in the culture that we're in.  In our culture, we drive cars and, sometimes, I have to drive mine."  Hope seemed to accept this explanation, especially since we were driving to the library to pick up a book that she was waiting for.

The morning after the encounter with the teenager, I chose to have us ride bikes.  That afternoon, as expected, we were late coming back to meet Josh's bus, which was already waiting for us outside of my house (idling it's large engine).  While the bus driver seemed irritated at our tardiness, Josh was oddly and deliriously happy.  He was busy clapping his hands like crazy and laughing.

"Want ice cream.  Want popsicle." he said, as I rushed to get him off the bus.

"Yes, Josh."  I replied, deciding to enter into the moment of grace.  "Today there will be popsicles for everyone."

Sunday, May 26, 2013

Josh the Bridge

Two homeless people that I recognized from church were drinking coffee and smoking outside of the coffee shop that I had just walked out of.  My van was parked right in front of them so I stopped and said, "hello".  One of them recognized me and introduced me to his friend.  I thought that it was very interesting that, despite the fact that I am married to the lead pastor, he referred to me as "the mom of that boy... you've probably seen him around church".

His friend immediately knew who he was talking about.  "Oh yeah.  I've seen him.  He . . . uh, whaddaya call it?  He walks in circles, right?"

"He has autism."  I offered, trying to be helpful.

"Right, right.  Autism."

They were both very pleased to have the right word and did not seem at all uncomfortable about talking about my son.  They asked how he was doing and offered the observation that he seemed to be more calm on Sunday mornings.  We had a lengthy, pleasant conversation about special needs, and kids and our community.  To them, knowing that I was Joshua's mom seemed to make them more at ease with me, like we had an unspoken understanding of what it is to have hardship in your life.  It was a surprisingly warm and connective conversation given how little we knew each other and how dissimilar our lives are in many ways.

I've noticed that Josh has this effect on many others who live a different sort of life than most people.  A young teen in our church, who is a foster child, seems to have a natural affinity for Josh and offers to help out with him on Sunday mornings whenever he can.  Another woman, who has mental health issues, has approached me and has told me that she feels like she relates to Josh in having a different kind of brain.  She tells me that she sees the love of God in Josh as she watches him interact around the bagel and doughnut table.

For me, Josh is like a bridge to many different types of people, especially people who are marginalized.  It's almost as if I have some sort of instant credibility or trust that I, too, live an alternative and difficult life even though I'm a minivan driving suburban mom. This brings a richness and a diversity of people to my life that I treasure.