There are two things going on in my life that dominate my time. My Mother is dying. My sons are autistic. Everything else is deformed by that lens.
What of it? Every life has its challenges and I have mine. The constant danger for me is that I am dragged down by the incremental impact of sequential disappointment and quotidian horror.
What does that mean? The best illustration is example.
We recently had the IEP meeting for my 13 year old. He is bipolar, dyslexic and mildly autistic. Our genes dealt him a very bad sort. As a result he is in a fully supported special needs classroom and has just started doing transitions out into a classroom where the students are getting ready to rerun to a more typical middle school.
His teachers and support team were constant in their praise of his progress in that environment and his leadership within his smaller classroom. His mother and I were both very happy to hear he was doing well and contrasted it against statements he has made. He has expressed a sense of social isolation and will say to us, "No one likes me, " and "I do not have any friends." Here we had good news. He was doing well, was making friends who were more neuro-typical and was a leader among his peers.
At dinner that night, we began to review the results of the IEP and the things we had been told by his teachers. He was resistant and the conversation went places I did not anticipate.
"Guess what I heard a your IEP today," I asked him as we began dishing out pasta.
"I dunno," he was non-committal and seemed focused on getting food. He will suck down 2000 calories a meal if we let him. It is one of the side effects of the depakote. Hunger chews on him at times.
"Says here, says," I began as I got up and grabbed the IEP off the coffee table in the living room. "That you are well-liked, a leader in you class room and get chosen as an ambassador for the school when they bring new kids in. It also says you really like roleplaying in class and set great examples for your..."
Kent slammed down his fists on the table and howled. "Ooooooooooooooooounk!" he grunted as loudly as he could interrupting me. "NO!" he yelled. "It's not true," and he began to beat the table with his fists, casing the plates and glasses to dance all over. My wife nimbly snatched her drinking glass and mine and stood up. All the delicate glasses were long gone. These were plastic tumblers but it was the spill she was stopping. There was name calling, and cursing from him. He said I was mean him, that we hated him and that his teachers were all liars. It was pretty rough.
I thought this would be a moment of celebration and a gateway into conversations about his friends and how things went in school.It was not. It was 20 minutes of rage, a disrupted night and a long hard slog into why he felt like he did & what was really going on.
I still don't really know and this will be hard to unwind. we do not doubt what his teachers are saying. During the IEP session, when we presented his narrative and what was coming out in his weekly therapy session, they were a little boggled. He seems happy and engaged to them and has been very successful academically the last two years, where before he struggled.
This was hard for me. I gave up a very good job as senior audience and circulation executive in Macon to come work in Atlanta in a more junior role. I also lost my way as a writer. The year I left Macon I had my first book published as a gamer. I have not had time to write anything else since. I've puttered along with a psuedo-monthly article in a trade magazine, but that is about it.
Both of my sons are more able than they once were & have at least a 50/50 shot at independence, but still... moments like this drain the color from life. We will dive in & explore & find out what is boiling here & at the bottom of all his pain.
And my Mom is dying. She and my dad are in my house in Macon. I've been able to carry that expense for them for about 3 years and it has been worth it and a gift to them. Mom has slid into the beginnings of dementia and has had several strokes. She is at hospice, at home and my dad is her caregiver. In her dying I hearing the tick of my own mortality.
She states at it sometimes and is terrified. That is hardest to see because it summons fear from me. This helps me understand the religious impulse. we will do anything, twist our minds into whatever contortions we can to get more life, or at least the promise of it.
I spend as much time as I can in Macon helping my Dad, but damn... autism. The boys. Some, days I feel pulled between these two polls of responsibility and that I am failing in both.
My Father says, "It's a good life if you don't weaken." He is fondly quoting his Uncle Sid. I share that impulse and quote him and my Grandfather's often.
Some days I feel weak.
So, some Whitman because I need it today.
O Me! O Life!
BY Walt Whitman
Oh me! Oh life! of the questions of these recurring,
Of the endless trains of the faithless, of cities fill’d with the foolish,
Of myself forever reproaching myself, (for who more foolish than I, and who more faithless?)
Of eyes that vainly crave the light, of the objects mean, of the struggle ever renew’d,
Of the poor results of all, of the plodding and sordid crowds I see around me,
Of the empty and useless years of the rest, with the rest me intertwined,
The question, O me! so sad, recurring—What good amid these, O me, O life?
Answer.
That you are here—that life exists and identity,
That the powerful play goes on, and you may contribute a verse.
