Rain Man

 

My husband Alex is very committed to our daughters' movie education.  A veteran movie and TV watcher, Alex loves sharing the excellent films of his childhood, youth and young adulthood with them whenever they are willing.  At 13 and 14 they know more about World War II movies, sports themed movies and movies of the early 80s than most other kids their age.  We are aware that time may be running out on getting them to watch movies with us as they have just started high school and are on the brink of almost always choosing time with friends over time with parents.

Right before the school year started this year we realized that the girls had never seen Rain Man.  Given the fact that it's about a sibling relationship with a brother with autism, we skipped the usual back and forth about what people wanted to watch and just decided that we just had to watch this.  Hope and Anna had never heard of this movie and had no idea what it was about.  

Anna was hesitant at first saying, "It's kinda long, Dad. Can we watch something else?"  

We insisted, saying, "Just trust us. You'll like it."

They did like it.  We laughed.  We cried.  We called out unrealistic and disturbing things (like Tom Cruise's girlfriend kissing Raymond in the elevator).  Mostly, we resonated.  Here are the top four points from our post movie-watching conversation:

1)  Dustin Hoffman deserved his Oscar.  We thought he did a great job embodying a person with autism.  When his character had meltdowns or dealt with stress through saying things over and over again it felt very real to the four of us who have not only lived with Josh for a long time but have also observed his peers.

2)  Not all people with autism have savant syndrome.  Why does it seem like everything that in everything that Hollywood pumps out people with autism also have savant syndrome?  For example, we are fans of the Good Doctor, where the main character has both autism and savant syndrome as well.  He can figure out all sorts of medical miracles with his superhuman capability of picturing the details of the human body in his mind.  If Josh had savant syndrome, what kind would we want for him?  Musical ?  Mathematical?  Is the ability to draw hairdryers and fans on the magnadoodle for hours at a time a superpower?  We once had a music therapist who was sure that Josh was a musical savant with perfect pitch.  About a $1000 in music therapy lessons later, we realized that he didn't.  

3)  People with autism are capable of expressing a wide range of positive human experiences and emotions.  We loved how Raymond had moments of humor, affection and joy.  We really resonated with the movie makers' choice to have Raymond be a well-rounded person who had the whole human gamut of emotions and not just an amalgam of stereotypes of what people think that people with autism are like.  Our Josh is a fount of happiness, peace, confidence and curiosity.  We appreciated that as Charlie got to know his brother as a multi-dimensional person so do we.   

4) In this story, institutionalization was the answer.  Yes, this film was made in 1988 but we were curious about how people's perspective about the need to house people with autism and other disabilities in institutions have changed.  In this particular story, the best thing for Raymond ended up to be living in the institution which he had already lived in for decades. It didn't hurt that Charlie and Raymond's father had tons of money and could afford to house Charlie in a very nice institution.  Also, Charlie was clearly not in a place to be able to suddenly and responsibly live with Raymond.  Still, we wish that there were more examples in the media where families are shown to be living and flourishing with people with autism.

For those of you who know real people with autism, what felt real or interesting about this movie?  What felt off or wrong?  What do you think that this film says about people with autism? 

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."

How Josh Helped us to Interpret the Bible

Last week our family went for our annual trip to a friend's cabin in the mountains. Together with another family of five, we spent the week laying around, cooking good food, exploring streams and having daily group morning devotional times (among many other wonderful activities).

We've known this family for decades and have vacationed with them for the past five years in a row.  I really appreciate that the three kids of this other family are all very tenderhearted toward Josh and try to help him out whenever they can.  One evening we had a discussion about what it's been like for them to grow up with Josh as a "cousin" and they had insightful things to say about how being in relationship with Josh has made them more sensitive to others, especially those who have special needs.

One morning, the mom of the other family led us in an inductive Bible discussion of Ephesians 4:26-32.  Our kids range from age 7-15 and we have just barely become a group that could have a brief discussion of the Bible together.  It was a bold decision to try to have this kind of devotional time with this crew, especially with my wiggly troupe.  It went surprisingly well.

The part in the middle of the section goes like this:

"Let no evil talk come out of your mouths, but only what is useful for building up, as there is need, so that your words may give grace to those who hear.  And do not grieve the Holy Spirit of God, with which you were marked with a seal for the day of redemption"

One of the kids asked, "What does it mean to grieve the Holy Spirit?"  After we defined what it means to "grieve", we wrestled with the question of why it might make God sad when we don't treat each other very well.  Why does He care?  What might that feel like to God?

Finally, my husband came up with an illustration that made a big impact on everyone.  "What if someone came up to Josh in front of you and said, 'Shut up, you stupid retard' ?  How would that make you feel?"

Alex barely got his question out of his mouth before all of the children (except Josh, who was listening to music on headphones) gasped with furrow-browed, open-mouthed, passionate indignation. Hurt and a sense of injustice flashed on each young face.

"Why would anyone say that?!"

"I would want to beat them up."

"That would make me really, really sad and mad."

We had had a conversation earlier in the week about the "r-word" and about how it's inappropriate but that some people use it in reference to kids like Josh.  We were all aware of how hurtful words like that are.  (Actually, we had an interaction similar to the one Alex described when we were at the library the other day.)

Alex explained that how we felt was sort of like how God feels when we treat each other badly and refuse to reconcile with one another.  It grieves Him.  Just like we all want to protect Josh and make sure that he gets treated well, God feels that way about every one of us.

I was struck by the emotional and theological richness of the moment.  Because we all have relationship with Josh, a vulnerable person with many, many needs, we have a deeper understanding of what humanity is like before God and about how God feels about the brokenness of human relationships.

The emotional impact of the illustration made the truth of the scripture sink in.  My girls have mentioned this scripture to me several times since we've returned home, noting that they want to be better at not being angry at each other because they don't want to grieve God.  They asked that I print it out so they could put it up on the walls next to their beds.

Even though Josh was listening to music on Pandora on my iphone during the whole devotional time that morning,  I treasure how he was (and is) involved in expanding our understanding of God just by being who he is.

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.  

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."