Difficult Talks

Thursday, Oct 19, 2023

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Being in the right place at the right time also applies to little things.

I’ve started a habit of practicing tai chi in the park across from work during my breaks. It’s my moving meditation, which I’ve always found easier than static, sitting Zen.

The other day, a little fox came to join me. Well, they weren’t there for me - the poor city fox was checking the garbage bins in the park. I was just part of his scenery. But it was very special to me the way he looked at me, acknowledging my presence, and got within a few meters of where I was, all while I continued to go through the movements. No fuss, no startle. Just a couple of creatures doing their own thing.

It really made my day.

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This week I had a difficult conversation with my eldest, who I call the Professor. It was a struggle to find the right thing to say. I’m still working through it.

He’s 15, has what is commonly called high-functioning autism, ADHD, type 1 diabetes. He’s smart, funny, creative, and has a huge heart.

He has a difficult history with school. He’s a smart kid, but he struggles with the emotional tools, executive function, and self-regulation he needs to function in a classroom. He also has memory problems and extreme sleepiness that may be medical, or may be rooted in avoidant behavior. He should probably be on medication for his ADHD, but his medical situation is already complicated, and it’s been difficult to get him the much-needed meds he’s already taking.

He’s only really been in school for junior high. It was difficult for him to be there, to stay engaged. He now has deeply rooted school avoidance, complicated by his need for heavy nursing support and a tendency to sleep through class.

The transition to high school was a non-starter. Within the first few months he simply stopped attending. It’s not surprising. By nature, high school has less support. By this time last year he had stopped attending at all.

This school year, his mother enrolled him in a private school. She crowd funded the tuition, since neither of us can afford private school, which is incredibly generous. The school looks great, too. The staff are engaged and responsive. They understand the Professor’s struggles and do what they can to support him. I’m honestly still worried about his diabetes care, but the people involved are working together as a team to help the Professor take charge of his own medical care.

During visitation I asked him how school was. He gave a lot of vague answers, forgot a lot of details, and eventually let slip that he didn’t attend all week.

This triggered the talk.

He knows about his mother’s crowd funding for the school. He understands that he has this opportunity because of the generosity of strangers online. He was surprised to learn that his grandfather offered to pay for the school moving forward, as well, but that his mother turned down the offer.

The Professor has special needs. There is no denying that. He’s also gifted, when he’s able to get things done. I marvel at his mind sometimes.

No one expects him to abruptly become enthusiastic about school and get straight A grades. He doesn’t have the groundwork in place for that yet. All he needs to do is go to school and try. But I made it clear that I expected him to go.

He felt guilty. I don’t blame him, considering. I suspect he did before the conversation, becoming increasingly uncomfortable whenever he fails to attend school. It’s a complicated problem. On the one hand you have this expectation that you go to school, study, and learn, compounded by the fact that other people have paid for your schooling. On the other hand, you have very real, persistent problems with sleep, attention, motivation, and attendance. There is anxiety and entrenched avoidant behavior. And, in a sense, he’s never really been asked to do this before. When things get too hard, he’s been allowed to stay at home, craft, and play video games. 

He and I agreed that guilt is a terrible feeling. I didn’t want him to have to feel it, and it was too bad that talking about the facts of the situation made him feel this way. But we also talked about how guilt can be useful. It’s a warning signal telling us that we’ve done things and, if we continue the behavior, people in our community may begin to withdraw their support. It’s a wakeup call to change.

This was really tricky. I didn’t want him to think that all guilt was good. I’m not sure how well I did explaining it, or if he was ready to hear it, but I tried to help him understand that we always need to sit with an emotion and see if it’s coming from a place of truth, whether someone else is trying to force us to feel it, or its a maladaptive response to another trigger. I hope he understood that.

We sat together and he let out his discomfort. It involved crying, silence, a lot of tissue, and a bit of a break to recover. He knows that burying the guilt doesn’t help. He processed it, and then we talked about what to DO with it. 

We went back to the facts. He needs to go to school. We, his parents, need to get him to school. He understands what’s at stake if he doesn’t go. He understands that even if he has funding for this year, or next, no one is going to want to donate for him to go to a private school that he doesn’t actually attend. That would be like buying gourmet food and throwing it all away.

The thing we ended with was how proud I am of him. He has grown up a lot, and despite his significant challenges, he is doing better. He is trying. And he knows that I believe in him.

Get started. Keep going. Be okay with mistakes along the way. We can help him work on the rest when the time comes.

I don’t know where I heard it first, but what happened to us (i.e. autism, ADHD, diabetes) isn’t our fault. It IS our responsibility to recover from it and learn how to move forward, along with help from those who love us. 

I'm still thinking a lot about the talk. I don't know how well I handled it, whether I said the right thing or not, whether I said too much or too little. I know I have to trust him to pick up what I'm putting down, but it's hard when I only have him for 14% of the time. If he remembers anything, though, I hope it's that I'll be with him no matter what.

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What are my qualifications? None, except for my own experience and a desire to help. Going back to Doctor Who, “I am an idiot … passing through, helping out.” I hope my own struggle with my darkness can help you with yours, or understand the struggle of someone you love.

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Life before death

Strength before weakness

Journey before destination