My Interview

Here is a link to my recent interview with Patricia Robinson, a therapist who works with individuals on the autism spectrum.

The biggest event for our family lately had nothing to do with autism.
A very dear friend passed away after a two-year battle with stomach cancer. This is my first time (at age 39) experiencing the death of someone in my peer group. As this friend left behind a lovely and loving wife, as well as a 4- and 5-year-old, it is something that touches our whole family.

The kids, of course, have had a lot of questions. "Where did S. go?" "Did he live a long life?" "Is his cancer gone now?" "Are his kids sad?" We took them to the funeral, hoping to show them how our faith community demonstrates love and support in times of sorrow, as well as celebration. Zoe even asked to attend the burial and, after hesitating momentarily, I took her. She was curious, not missing a detail, asking her usual myriad of questions. After the family had tossed flowers into the grave and we walked somberly away, she said, "When do we see the body?" "You're not going to," I answered, "Are you disappointed?" "Yes," she said, "I wanted to see it." I explained to her that our friend had gotten very sick in the last couple of months and that I thought it would be better if she remembered him when he was well. I had said good-bye to him on the night he died and was struggling to remember him healthy and strong.

Liam has been perseverating on this tragedy and I've been afraid he'll say something inappropriate to our friend's wife and children. So far, nothing beyond him fingering the large, smooth wedding band on a chain around V.'s neck and asking, "Whose is this?" although he already knows. In defiance of his own disability, Liam has been more focused than Zoe on the emotions of those left behind--what they feel and for how long they may feel it. "When will they stop being sad?" he asked me. In all honesty, I had to answer, "Never."

This is how you repay me?

I have not posted recently because there have been some ups and downs for Liam at school and I'm never sure how much is safe for me to write about publicly. I'll try to be as cryptic as possible.

Liam's beloved teacher went on maternity leave a couple of weeks ago. He seemed fine the first week--a pleasant surprise. Then his behavior started to unravel. One day I got a behavior report that made me very nervous. It was a full page of handwritten notes about Liam's noncompliant and aggressive episodes that day. We hadn't seen behavior that troubling in about a year.

So I did what I do. I sent my brain into overdrive, consulted with friends and professionals and talked to Liam. All I could get out of him was that he missed his teacher. He missed her so much, in fact, that he had to make it clear to me that he wouldn't miss me if I were dead and indeed wished for my life to end. "I won't miss you when you die," he said to me between sobs, "I hope you die right now." Just so there's no confusion.

I think everyone knows I am not about being a martyr. I am not asking my son to thank me for working an unpaid job by being his full-time advocate, teacher and therapist. I am not asking him to tell me he loves me. I am not even asking for his affection, as nice as I can imagine it would be. Is it too much, however, to ask that he doesn't actively pray for my death?

It is useful to have a sense of humor about something that would otherwise rip your heart out. That's why I find it funny that he takes out his frustration on the person who holds his world together. Nor is it lost on me that I have the same tendency. It's also funny (or ironic--I'm always confused about what exactly irony is) that for so many years I prayed that he would talk, that he would express his feelings with words and he now uses those hard-won words to berate me. Also funny: if my job is being his advocate, then isn't he my boss? If a boss ever talked to me like that, I would quit. I can't quit on this person who hates me and wishes I were dead because all I want is for him to be happy.

So here we are. After Liam had calmed down, I hugged him and told him I loved him. "And it doesn't matter if you hate me," I added, "Love is stronger than hate." "Yes," said Zoe, "it's like Martin Luther King, Jr. said: 'Hate cannot conquer hate. Only love can do that.'" She then retrieved her little paperback biography of MLK to show me the source. Of course she had it right.