Juice Boxes and Chips OR The Reasons for Tears

Some of you may recognize pieces of the writing below.  I have wanted to rework several essays I wrote into one, change it a bit, fix it up, and make it relevant for now.  I (finally) did so.  I have been thinking a lot lately about what I want to do after my postdoc ends (not until September 2014...but I have big dreams, people!).  If I'm honest, I know that one day, I want to start some sort of clinic/organization for low income families with children with developmental disabilities, and I have a particularly special place in my heart for parents with intellectual disabilities raising children with special needs.  This isn't work that people want to do, but there is something in my heart that just loves it.  I know, realistically, that I couldn't do it full time...but it's going to happen, one way or another.  People think I'm crazy for loving this, and a conversation I had recently prompted me to revisit these writings and add some new pieces.  If I get up the nerve, I'd like to share it with the person in question (a person who asked me whether I thought a job like that would be a "good use of my degree and intelligence").  As I often do when I am infuriated, I shut down and said nothing in the moment.  That's something I have to work on, no?

Juice Boxes and Chips OR The Reasons for Tears

When I was in 4^th grade, I completed a homeschooling curriculum on World History. I remember reading the chapter on the Roman Empire, and particularly the section on the city-state of Sparta and the culture of the Spartans. When I read about the Spartans leaving babies that seemed weak, and therefore unlikely to succeed as soldiers, on a hillside to die, I went to my mother, sobbing, so distraught that I was unable to explain what I had learned through my tears.

That memory serves to remind me that, perhaps, I am hardwired to be the person I am. I work in a job now where my heart could—and sometimes does--break on a daily basis. I have worked to be able to handle the stories I hear because, just as I was born to cry about Spartan babies dying on hillsides, I was born to hear stories. I hear stories of children born to drug-addicted mothers who spent the first two weeks of their lives detoxing and now engage in almost constant, severe self-injury.  I hear the stories of a mother of a 5 year old with autism who brings her 17 year old daughter to the treatment session to help remember what I say.  We fight a losing battle together as the 17 year old dropped out of school in 9th grade, neither of them can read, neither are ready to remember or even hear what I say, and the 5 year old screams through the entire session. I hear stories of women living in homeless shelters with 3 year olds with Down syndrome, or women with 5 year olds with severe developmental delays living with them in residential drug treatment facilities.  I listen to their stories, and I try to work with them through the behavior problems: let's teach her to communicate for cheerios.  Praise him for being good.  Ignore the screaming.  Try this behavior chart.  Praise her for being good.  Let's try a visual schedule.  Let me show you how to teach her a more appropriate behavior.  More often, though, we spin our wheels in the basics: Praise her when she does something good.  When I say lock up all sharp objects, I mean lock up the knives AND the scissors.  Keep the window shut AND locked.  Praise him for being good.  Don't hit him - and yes, hitting with your hand still counts as hitting.  Praise her for being good.  Talk to him.  Ignore the tantrums. Don't lock her in the closet.  Praise him for being good. 

I say these things again...and again...and again, and after I say it again, sometimes I get responses like, “hey, the other lady we saw, she gave him chips AND a juice box. She always gave him juice AND chips, and she was always real good to him. They’re always real good to us here. You can give him chips AND a juice box, right Doctor?” Something in my chest tightens in frustration as I know she hasn't heard me, she will go home and attend to every problem behavior, forget to praise the good behavior, and she will hit him again.  But I summon all the patience in me to assure her both verbally and nonverbally: Yes.  Yes.  I can be good to you, too.

In those moments, I don’t know how I expect them to be consistent. I don’t know how I can expect them to think about 3-step guided compliance and proper time-out procedures when they can’t read the handouts I gave them. When they don’t have a consistent place to live. When they are worried about how they’re going to feed their kids. When they are worried about their child’s safety. When they have 6 kids under the age of 6 because their sister just moved in with them with her kids, and 6 kids in a 2 bedroom apartment is just too many.  I hide my disappointment in professional language as I write my progress note, and admit to no one that I feel disheartened that I can’t help them.

…but the next week they come back. And the week after that they come back.  As long as they keep coming back, I know I must be doing something right.  As long as they keep coming, we have another opportunity, and potentially, that's all we need: just a few more opportunities for me to scratch at the darkness and let in some light.  I swallow my frustration and sense of incompetence, and we try, and we try, and we try again.

The thing that gets me is that they do try. They are trying. They are giving this life their all, and it’s just too damn hard for any one person to navigate this life with the hand they’ve been dealt. So they try, and I try, and if we’re lucky, something will happen. I give their kids chips AND a juice box. I give them picture schedules and session notes in the simplest words I can manage. I praise them for trying. I give them bus tokens. I show them and tell them and practice with them, and have them show me, and tell me, and practice with me. 

As I climb up the hierarchy from pre-doc to post-doc to 2nd year post-doc, the people around me say, "don't you want to work at our other locations?  Don't you want to move out of the city and work with the families you can ACTUALLY make a difference with?  Don't you want to work with our families that have it more together so you can actually use your degree?"

And I tell them no.  We compromise, and I work only part time in the city, and something in my heart misses the chaos and the challenge of trying to establish trust, and love, and change with some of society's most vulnerable citizens.  This week, I told a young mother I will have to transfer her to a new therapist.  This mother has an intellectual disability, several children with behavior problems, and it took us 4 months for her to tell me something other than, "Hey doctor, I don't beat my kids.  I don't beat my kids, doc.  I don't.  I'm good to them, you know?  I know beating them is wrong."  After a year and a half of working together, she cried when I told her I was leaving, and cried harder when I told her how proud I am of her work and dedication.  This mother, who came to me angry, defensive, untrusting, and scared gave me a hug and a smile and said, "I just know things gonna get better.  I just gotta keep coming to my appointments, and praising him and, you know, telling him good job and talking to him and giving him toys to play with."  She cried again, and when I asked the reason for her tears, she told me it was because she was proud of herself.  There are so many reasons for tears. 

Really, who among us doesn't live at times feeling angry, defensive, untrusting, and scared?  Who among us has the courage to push through that, even if just for one relationship with someone who exemplifies so many things we are not -- things, even, that we have learned to fear and distrust?  Perhaps this life is really only a process of trusting the world enough to re-engage.  It takes courage to wake up every day and walk out into this world ready to try it again.  This willingness to continue engaging and trusting and trying is a way of saying to the world "I'll give you one more shot," on those days when even the sun seems to have forsaken you.  On the days when my job seems hard, I remind myself that this is my way of engaging in an active, intimate, and interpersonal willingness to show my hope for humanity.  Even on the bad days, I know this is a gift.

Acts of courage and compassion and bravery leave battle wounds and scars that change our perceptions of the world.  I believe that bravery in life comes from admitting that you are living in spite of the wounds and scars, rather than from continuing to live life as though you are unshaken.  The courage that I live is simply the ability to hear it all, and to love the world again. The wounds I carry are sometimes physical, but more often and more substantially lie in the intimate knowledge I hold of the pain in others’ hearts. My eyes are battle scarred as the lenses with which I view the world become scratched with knowledge I sometimes feel I would rather not have.   And yet, I listen. I open my heart to the breaking and healing. And I continue to love the world.