Leave It. Not the Yes Song That I Love. A Different Kind of “Leave It”

I am compelled to write again on the topic of guilt.

I’ve acknowledged before that I feel guilty for my son’s autism. I know I’m not alone. The Thinking Moms’ Revolution ran a post on this topic last year, titled “How I Gave My Son Autism.” That post exposed a reality: Many mothers, when they find out the health conditions that underlie autism and the environmental factors that may trigger them, feel guilty for not knowing more, for not doing more to prevent autism from invading their children’s lives. I am one of those mothers.

I am also tired of defending my right to feel guilty. Here’s a simplified version of a conversation I had this week:

Friend:

“Why don’t you weigh in publicly on some of these debates, like vaccine safety or antibiotic use?”

Me:

“They are tough issues, and I feel like everyone is so polarized and aggressive. I need my strength to recover my son and don’t want to spend it on defending myself.”

Friend:

“You’ve learned a lot, though. Why not share it?”

Me:

“Someday I will, when Martin doesn’t need me as much. Now is not the time. Understand also—all that I know now figures into the guilt that I feel for what I didn’t know when Martin was a baby. It’s painful for me to share that.”

Friend:

“Wait! You know you shouldn’t feel guilty, right? You know it’s not your fault that Martin has autism? Tell me that you know that.”

This issue arises constantly with well-meaning persons who are not biomed parents. They hear that I experience guilt, and they rush to reassure me that I have nothing to feel guilty about.

While I can’t fault anyone for wanting to make me “feel better,” random reassurances that I bear no guilt don’t make me feel better. They upset me. I know things. These things make me feel guilty. I have this feeling. I have a right to feel it. The emotion is mine to resolve (or not) on my own terms.

Biomed parents get it. When I speak with another biomed parent about feelings of guilt, the response is usually something much closer to, “I get that. How are you coping? Want to brainstorm ways to channel that into positive action?”

We don’t get to walk around telling people what emotions they should or shouldn’t feel. I, personally, become uncomfortable when a mother says that her child’s autism is a “gift.” But I don’t respond, “Wait! You know autism isn’t a gift, right? You know you shouldn’t feel like your child is lucky?” I respond, “Tell me more, if you want to.” And then, if she wants to talk, I listen. If she doesn’t, I leave it alone.

The guilt that I feel is not harmful to my relationship with Martin. To the contrary, it prompts me to do my best for him, however I can.

So, please, leave it alone. That’s a good way to help.

Home Again. Not Perfectly 100% Spot-On

We’re home, since Wednesday evening.

We were overjoyed to see Martin, who seemed to share the emotion. He spent Wednesday evening running excitedly around the apartment, pointing alternately to me and Adrian, exclaiming, “That’s Mommy! That’s Daddy!” He showed off some new skills, too. He’s riding a bicycle, an upright model with training wheels that my mother puchased while we were away. Martin pushes the pedals and steers and calls, “Help! Help!” when he gets himself stuck. He’s also taking pills without assistance. If I hand him a capsule and ask him to swallow it, he pops the thing into his mouth and obliges. Pretty cool stuff.

At the same time, I can’t deny that, in some areas, he’s “off.” I have to call his name several times to get a response. When he does finally answer, he maintains eye contact only briefly. He’s unfocused and difficult to control. He’s thrusting his lower jaw forward, grinding his teeth again. And he’s taken to wearing a too-small winter vest, even in the house. Even to bed. He started this while Adrian and I were in Israel. Samara speculates that he may have been associating the vest with us and therefore finding reassurance in it. I (being Debbie Downer, as I am prone to) suspect that its something more like the weighted vests often recommended for autistic kids, to help them feel secure when their senses are processing haphazardly. In any event, it’s a new behavior, and one with which we are not pleased. He just does not seem to be doing as well as before we left.

I’m asking myself what all this means.

Clearly, my mother did an outstanding job with Martin while Adrian and I were vacationing. She followed his supplement routine scrupulously, taught him to ride a bicycle, and generally loved the heck out of him. One of my brothers was here from Boston too, playing with Martin and—to needle me, his New Yorker sister—taking pictures of Martin in Red Sox apparel and posting them on Facebook. So inadequate care has nothing to do with Martin’s slight backslide. Other possibilities I’m considering are anxiety at not understanding when his parents would return; a stale supplementation routine (he’s due for some changes, which we were waiting to implement until after vacation); and the change in routine, i.e., lack of school for a week-and-a-half.

I’ve promised repeatedly not to let the day-to-day ups and downs of the process get to me. But I do, of course. Yesterday, with Martin’s attention AWOL, I tripped and stumbled into the doldrums. I blamed myself, for being gone. I felt hopeless, for losing some of our great recent progress. I … whatever. There is no sense re-hashing a bad day. Samara works late on Fridays, so Adrian and I went grabbed dinner and went to see The Iron Lady. I fell asleep half an hour into the movie and woke to the closing credits. I felt better.

Does this mean I’ll never go away again, until Martin is recovered? No, probably not. Adrian would never stand for that, anyway. He’s my sanity check. More likely it just means it will be a while.

Now is the time to figure out what’s going on with my little man. Head up. Done with feeling sorry for myself.