Dental Grace

Our dentist is the Rolls Royce of pediatric dentists.  He is a professor at Stanford University Medical Center.  His private practice, which has a waiting list a mile long, specializes in unique and difficult cases of pediatric dentistry.  His waiting room is filled with children with special needs and their stressed out parents.  Dr. Adams is very dignified looking African American man in his sixties.  I think that he’s had an extremely successful career and he drives a very expensive sports car.  He always wears a bow tie with some sort of child friendly print but his manner is all business.  His staff speak in very low and respectful tones around him.

Like many autistic children and children in general, my son does not do well with people poking sharp instruments into his mouth.  He had a stint of doing well at his cleaning and check up appointments for a couple of years but after several years of completely unsuccessful appointments we elected to try sedated dentistry at our local children’s hospital.  The plan was to do a cleaning, X-rays, sealants, and a thorough check up, all while Josh was under anesthesia.  Because of Josh’s endocrine issues, a team of anesthesiologists and endocrinologists were also present to make sure that his hormone levels were managed while he was under.  Like most medical processes with Josh, it was quite a production. 

The morning, which began swimmingly, came to a grinding halt when Dr. Adams met with me after the procedure to tell me how things went. 

“Well, we found some cavities,”  he began.

“What? “ I was very surprised, as Josh had never had cavities in his life.  “How many?”

“Twenty.”

“What?!!!”  

My face must have immediately betrayed my key emotions – shock, anxiety and shame.  I’ve done a bad, bad job with my beautiful son’s teeth.  I thought of all of those times that I didn’t want to fight with Josh to floss so I didn’t.  I wondered if Josh would ever learn to brush on his own.  I imagined Josh losing all of his teeth and having to get false teeth, which a thousand specialists would have to be involved in.  They would whisper to each other, “His mother didn’t do a very good job managing his teeth.  She’s a bad, bad mom, you know.”

I expected that Dr. Adams would respond with some firm encouragement about better dental practices at home.  What parent doesn’t dread what the dentist will say when their child has failed the cavity test? 

But Dr. Adams surprised me with his kindness and grace. 

“You know, my sister has cerebral palsy,”  he shared.  “It’s hard to brush her teeth because she doesn’t have the muscle tone to keep her mouth open.  My parents and I really struggled with it her whole life.  It can be really hard with kids like these.  Also, Josh has his cavities primarily because he has exceptionally deep grooves in the tops of his teeth.  This is not your fault.”

What do you know?  Our dentist gets it.  And that ray of grace was enough for me to pull myself together and be led into the post op room where my son groggily opened his eyes and smiled at me.  

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?"

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.

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."