July 28, 2006

Mr. K

When Mr. K got out of the taxi and came to the door to speak to me, I knew there was trouble. His complaints were many: Hart was disrespectful; Hart had used bad words; Hart had threatened him. I listened carefully. I promised to speak to Hart and I pointed out that there was a reason that Hart attended a special school. More importantly, he was NOT TO RESPOND to provocative remarks, or in fact, respond to any remarks at all.

A few days later, the doorbell rang again. Hart had refused to sit in his seat and wear his seat belt. I could feel my blood rushing. "Mr. K, you cannot drive the cab unless Hart is safely in his seat. Please pull over immediately if this happens." Mr. K was not appeased. "But, I will be sitting there for hours!" I handed him a Post-It note, "If Hart is not sitting properly in the cab, you must immediately stop the car, phone me on my cell phone, and I will come and pick him up from you."

The assurance of my cell phone number worked, sort of. Mr. K would phone me, rattling off a litany of misbehaviors, I would cut him off, ask to speak to Hart, issue dire threats and then wait in the driveway to save Mr. K. the effort of getting out of the car to complain.

Then, one Friday, it was all over. My cell phone rang . . . Hart's social worker asked to me to come pick up Hart at school. Mr. K had arrived, taken a few choice expletives as Hart approached the cab, and simply turned around and driven off without a word, or a passenger. I could only feel some sense of relief as I headed towards school. Clearly, this was not working out.

En route, my phone rang. It was Mr. K! "Yes, I am sure it was very offensive." "No, I do not know why he does that." "Yes, I am sure you felt justified." I felt very tired and defeated. "Mr. K, Hart attends a special school. You understand that Hart is ill, don't you?" "THEN HE WILL TAKE A GUN AND KILL ME."

This is the kind of remark that parents of typical children will never ever hear. Sure, strangers feel free to weigh in with their fail-safe discipline techniques. Other children feel affronted by my kids' behavior. But this, from a cab driver hired and specially trained to transport special needs children to school? From a coach who refused to make any accommodation for Hart whatsoever? From Jeff's special education teacher who called me "a bored housewife who needs a hobby" at an official IEP meeting. From a principal who slammed the door on me when no one could locate my child when I arrived at the pick-up time?

Mr. K's exit sent me into a funk. Do the cab drivers, skating coaches, teachers, principals think they are letting me in on some secret? Believe me, I know how difficult Hart and Jeff are. In fact, I know better than anyone else in the entire world.

I would have wallowed in this pity party for myself, had I not come up with a little mental exercise that proved to be quite therapeutic. I made a list in two columns: zeroes and heroes. On one side, I listed the names of the Mr. Ks of the world. Not the thoughtless strangers, but the real culprits: people who should know better and still don't get it. Then I listed the heroes, not just the good teachers, doctors and therapists but professionals who have gone way beyond the call of duty. And the accidental heroes, ordinary children who have taken Hart or Jeff under their wing, caregivers who have shown extraordinary compassion and affection for our family and unstinting dedication.

Truthfully, the "zero" list is very long. Depressingly long. The hero list is much longer. To wit, a few examples:

Stephanie O'Connell: After a year of legal wrangling, Jeff transferred from public school to a specialized school for children with learning disabilities. Within a few months, the principal and dean informed me that Jeff's behavior was just too disruptive and he was on probation. Stephanie, Jeff's teacher, took matters into her own hands. She was determined to make her classroom work for Jeff. She lobbied successfully for additional services for him, an aide, occupational therapy, frequent breaks. It was she who opened the door to reading for Jeff by her creative approach. Years later, I asked her why she had gone to such great lengths for one of her pupils. "I loved him, I just loved him," she told me.

Kerry Murphy: Hart is a capable and dedicated figure skater, but a difficult and uncooperative student. Kerry always makes sure that there is an extra teacher or assistant in Hart's class and some special stickers or prizes to encourage him. When I ran into scheduling difficulties and considered moving Hart to another rink, Kerry said, "We want Hart in our program and I'll do what it takes to make it work for him."

Leah Okumura: Leah started babysitting for us occasionally when she was still in high school. She took care of the boys for seven years, until graduate school and marriage took her to Boston. Leah endured all manner of high-jinks, but she always came back. Her composure, her good sense, evident even at age seventeen, amazed and inspired me. One down side: she set the bar impossibly high for all other caregivers.

Leah and Jeff in Boston, August 2006

Charles Fox: Charlie does this for a living. He is an attorney specializing in educational issues for special needs children. Charlie has taken hysterical phone calls from me at all times of the day or night. He shepherded me through a long and protracted legal battle, and a few short, unprotrated ones. He has provided moral support and good counsel on issues large and small and he does so with good cheer and great wit.

Chris Grene and Ellen Sontag: Chris is Jeff's social worker at school, and Ellen is Hart's social worker and case manager. Chris has gone to extraordinary lengths to learn about Jeff's complex and varied difficulties. She is in frequent communication with Jeff's private therapist, Sandra; the two have put their heads together over the course of five years to develop creative solutions for Jeff. Chris is a tireless advocate.

Ellen has a caseload of 15 or 16 emotionally-troubled students, so I am amazed that she can meet with me every single week for an entire hour and make me feel like Hart and I are the most important and beloved people in the world to her.

Man walking dog somewhere in Arizona: Jeff rushed to hug a small dog, after (as he is trained to do) he asked if he could pet the dog. The dog owner asked me if Jeff had any "special challenges?" Good catch. I do not recall the rest of our conversation or anything about the dog, but that man's kindness and tact are remembered and appreciated.

So long, Mr. K. There are plenty of other heroes in the lives of disabled children and their parents. Thankfully.


Anonymous said...

After reading this I can not help but respond. Lydia, YOU are the unsung hero in my eyes. I could not do what you do, go through on a daily basis what you go through. Yes, I have my own set of challenges but I can not fathom taking on any more than what has been put before me up to now. You are a godsend to those boys. Where would they be without you??

Roberta said...

I'm afraid the reality of where they would be without Lydia is gruesome. I had written some conjecture, but I take it back.

Child-raising is ALWAYS hard, but Lydia has ten, twenty times more hardship every day.

Seeing the list of heroes was really heartening.