What happens if you ditch talk therapy and focus on behavior? (And Happy Mardi Gras!)

I’m in New Orleans on the floor of my hotel room while Z sleeps. He sleeps in the middle of the day so we can go out at night. The first night we saw jazz bands at 2am. Accidentally. They were so loud underneath our window that we went outside to find a band on every corner playing for tips.

The second day we moved hotels. I told myself it was an architectural decision. This new hotel is a refurbished church rectory. But we probably moved because falling asleep to neighborhood jazz makes for nightmares now that Z is going deaf from his car accident.

Now we’re staying next door to a vaulted Victorian church which has been unsanctified so there’s no pressure for proper living. Now there can be Mardi Gras weddings where so many women wear long ruffled dresses it’s hard to find the bride.

The piano in the apex is perfect for Bach so Z plays inventions in the morning before his head starts to hurt. The stained glass windows shine bright colors onto my legs while I sit next to the piano googling the names of the stained glass sponsors; maybe I’ll find a mate for a Mardi Gras wedding of my own. I would like to be Marie Antoinette for my wedding. Or Marie Curie with a glowing green headpiece.

In New Orleans, the people who don’t dress up at weddings are the ones who stand out for being awkward.

Usually I’m the only person who has to learn every rule for every situation so I like that in New Orleans the rules surprise everyone. There is a century-old krewe that marches in parades in blackface even though they’re Black, and sometimes the krewe invites white people to join them, and the white people also have to march in blackface. I like that there is a new set of social rules you have to learn to be in New Orleans. Because I function best when the rules are so complicated that people have to write them out.

I didn’t plan to come here for Carnival. I didn’t plan to come here at all. Z’s friends were busy making recordings for competitions and he felt like he had nothing. His phrase, not mine, but when he talks like that I panic. I can’t do another year on suicide watch. So I told him we’ll go visit my brother. I told him he’ll see his cousins and even though he’s fifteen years older, the gap will be nothing when they’re all adults — they’ll be lifelong friends.

“Mom. We don’t even know if I’ll have mental capacity when they’re that old.”

“How old?”

“Any age. I’m already an old man.”

I rushed to buy the tickets because his trauma therapist says the best thing to do when Z starts talking catastrophically is to just do something.

I told him, “We’re flying tomorrow,” to give him something else to think about. But the more I clicked, the higher the plane fare went. So I looked at other cities where my other brothers live. And every city was doubling in price. Like God was talking to me through seat selection.

The first city I had heard of that was under $500 per person was New Orleans. So I clicked buy and we flew the next day. And here we are, two weeks later, because no wonder the tickets were cheap: I picked the wrong date to return. I emailed Tatianna, who I talked to once and who I knew had kids Z’s age in New Orleans. When I met her I thought she must be crazy because no one raises kids in the French Quarter.

Two weeks later I realized that raising kids in downtown Boston is like raising kids in the French Quarter: all tourists, terrible schools, and a few lunatic parents. Tatianna’s kids homeschool which means they can run around the city with Z every day. Tatianna runs around the city with me. At night we dress up in increasingly intricate costumes to match the increasingly intricate parades.

I don’t know if we can handle the month-long crescendo to Mardi Gras. But we have no friends in Boston, and I spend so much time not wanting to go home that I forget to take my don’t-yell-at-people medicine. I rant for a day about how I want to buy more costumes even though I shouldn’t be buying costumes because you don’t buy costumes for a DIY parade and also costumes won’t fix my life in Boston; I’ll still be the same inside, and I’m worried that I’m breaking.

I want someone to tell me how to help Z with his pain. I want someone to fix my friend proximity problem. I want someone to tell me I can be absolved from fixing anything and just indulge myself for month-long stints of reading on the sofa. In pajamas. I want someone to unsanctify me, recommission me. I want to be rescued by a sponsor like I’m made of stained glass.

25 replies
  1. JD
    JD says:

    I have been where you are.
    Keep loving your kid. Keep showing up. Keep trying stuff to keep him out of his own head. New Orleans sounds brilliant. Maybe a Spanish speaking country?
    One day, you will find yourself on the other side. You will suddenly realize that things are better than they were. It takes time, so much time. Then you can sit in your pjs and read.
    For us, suicidal ideation started in puberty. When his brain got older, his thinking shifted and he found things to live for, things he wanted. We tried a lot of things, but in the end, he had to do it himself.
    I wonder if your kiddo could benefit from meeting others with disabilities or tbis.
    Thank you for sharing your vulnerability. I have enjoyed your blog for years and you have helped our homeschool journey.

  2. Joyce
    Joyce says:

    Hello! I never tried talk therapy. I just do the best I can, though I think I may have ADHD and autism just as you told me.

    Today, one my coworkers asked me about my friends. I had to tell her that my friends are the people in my office. Is it so bad?

    Anyway, about Z, I think it’s great that you’re doing a lot of activities with him and for him. New Orleans sounds like the perfect place for him. Happy Mardi Gras!

  3. ab
    ab says:

    I do counseling and psychotherapy with mostly families and individuals with autism/Asperger’s Syndrome issues

    KeKeep doing stuff and trust self and friends to inform your instincts and decisions

  4. Minami
    Minami says:

    I feel like, given Z’s personality type, he needs to stay busy with friends, so it’s good that you guys are in New Orleans right now. It would be nice if he could be doing that all the time in Boston as well. But that’s got to be hard to do when he doesn’t feel well so often. It’s understandable that he gets so down.

    You’ve said before that what young people with autism need most is empathy. But that can be hard too, when you’re running around trying to fix everything all the time and there’s so much that needs fixing.

    My heart hurts for you both.

    Also, your costumes look so fun and amazing.

  5. X
    X says:

    I became depressed and off and on suicidal for a few years during and after a series of unfortunate losses in my late 20s and early 30s. Never had depression before that. Currently male, mid 30s, high functioning somewhere on the spectrum, not quite past it but getting there. I had no one in those days to help me, but I 100% believe in your treatment, and while ultimately your son needs to get out of it on his own, your intervention can help. Go harder, faster, frenetic. Seek constant novelty, new countries, new activities, new knowledge, new capabilities. Push his comfort zone, skydive, ski hard slopes, dive deep seas. Feel fear, fear is good. Viscerally feeling the fear of death reminds you to live. You don’t have to literally be in a life threatening position to be scared of it – so you as the curator need to use your head. Push his comfort zone a bit at a time, overshooting it will backfire. Fast; starve, when you’re starving your mind changes, you instinctively want food to live, not to die. You can NOT do too much. More is more. Inactivity is the fuel for depression and depression causes inactivity. HARD exercise potently helps in the long run (months not weeks). Easy exercise does nothing. Good luck. This advice is only from my own experience, I don’t know what the research says.

  6. David
    David says:

    I’ve been following you for many years through your online posts. I think you are an amazing person, woman, mother, and friend who has lived an amazing life full of much drama, success, and trauma.

    I feel so sad about Z’s tragic crash injury; I hope you and Z are getting wonderfully loving support as you grieve and mourn the loss of his auditory function…the sensory trauma and pain must be horrible at times for him, and vicariously the same for you!

  7. Sean
    Sean says:

    Another way to be busy with friends is through hobbies and clubs. Maybe a club that is artistic in a nonmusical way. I have read about clubs that go for years with the folks becoming good friends. I dare not give any examples, because I am sure I could brainstorm at length without coming up with any appropriate ones.

    As for therapy, it’s not easy to go, easier to escape by saying Shrinks are stupid. I had a girlfriend in a self-help group. One day I was talking about my parents: If on Monday bar tenders all got psychiatrist training, and on Tuesday this was in the news, then on Wednesday my parents would be saying that bartenders are all stupid—the girl said, “Stop! You are telling my story!”

  8. Laura
    Laura says:

    Loooooong time reader here. I just want to say that even through your life chaos and the uncertainty you are pushing through and doing an incredible job. “That’s what mothers do” probably says a voice in your head…. And yes, we buckle up, push through our needs and feelings because the humans we brought into this world need is. But that’s what great mothers do. Not all mothers see the urgency in a situation and do something about it. Not all mothers recognize their child’s tone or possible pattern that could lead to a bad situation. -YOU do. I too have found that being an adult can be a lonely place. Which is quite comical, considering we’re in a hyper connected world. I’ve also built a huge online community. But that’s no substitute for the in-person, human connection you crave wrapped up in a single word: friends.
    We’re all cheering you on. You might not see us, be able to meet with us… but we’re here.

  9. Aimee Carson
    Aimee Carson says:

    You and Z are such beautiful people Penelope…I just adore reading your updates and appreciate your honesty. All my love to you in finding the strength to get through these challenges.

  10. Lydia M
    Lydia M says:

    Hi Penelope. Reading this I thought about interviews and articles written by the economist Arthur Brooks who writes a column about happiness in The Atlantic. He speaks often about the difficulty of his transition out of the professional classical music world into economics. He spent most of late childhood and early adulthood with the belief he would be come the world’s preeminent French horn player and his future identity would remain as a lifelong professional classical musician. When this began to unravel he slowly and painfully had to rebuild his identity and imagined future.

    I wanted to suggest some of his articles and interviews to you and Z, they maybe insightful. I specifically remember and excellent interview he gave to Andrew Sullivan on his Dishcast podcast. But he speaks/writes on the topic frequently.

    Thank you for devoting so much of your cultural criticism and writing to the important topics of motherhood, education and parenting.


    • Penelope
      Penelope says:

      I read Arthur Brooks all the time and never thought of reading him for the transition he made. Thank you. But also, I never thought of my own writing as “cultural criticism about the important topics of motherhood education and parenting” God I love that. Thank you so much.


      • Amy D. Kovach
        Amy D. Kovach says:

        I wonder if you reached out to Arthur Brooks and asked him to meet with Z if he would. It might be healing for Z to talk to someone who has gone through something similar and can encourage him that it is survivable (and share his pain and loss as well).

        • Penelope
          Penelope says:

          A bunch of people have offered to talk with Z about head injuries and about not being able to become a musician. Really, it’s remarkable how many different people have offered. Even people who have lost their hearing. So far he’s just talked with friends and family. And therapists. But I appreciate all the offers.


  11. Sean Crawford
    Sean Crawford says:

    Lydia M reminds me of how an artist with “some trade to fall back on” may end up falling back and out of art. (Everyone comedian Mary Walsh started with)

    Art is like assaulting across no man’s land: There is never a plan B. Hence, I guess, no plan B book for artists—except I found one once, surely still in print, about leaving art for a new life. (Not to be read until the point of no return) Surely a bookseller or a librarian or a search engine would be able to find it.

  12. Rumi
    Rumi says:

    I’ll share a highly controversial idea, but your blog has taught me this can be valuable, so here goes: He’ll probably be much better psychologically once he is fully deaf. I’ve read accounts by people who’ve become disabled and they all share that things get much clearer once you’re stuck with your new identity and there is no going back. You suddenly have a mission to learn how to live with the disability, you have that new identity to show up in the world with, and you’re in the here and now. Currently he’s probably in a very bad place because of the anxiety of *waiting* to gradually lose his hearing and his old life. I think slow and painful changes are the worst… If he wakes up one day and every deterioration that is part of his condition is done 100% he’ll just go with it. So I think the support he needs the most (and you do too) is how to go through the slow process and through the wait for things to happen. Hope this gives some unexpected perspective.

  13. Daniel Cook
    Daniel Cook says:

    Wow, thank you so much for sharing this, Penelope. I’m so sorry for everything you and your family are going through. I don’t know what else to say other than that I’ve been following you for 10 years now (since the spring/summer of 2013, when I was finishing up my sophomore year in college!) and I cannot thank you enough for sharing your thinking and writing publicly so that I can have that perspective to glean from. Truly, thank you.

    It really has helped me as I have dealt with severe mental illness that didn’t even start until my mid-20s, and now I’m 29, approaching 30, and I’m still here, just trying to learn and be a better person than I was in the past. I really admire how determined you are to help your son through the hardship he’s going through as well. You actually remind me of my mom, because she didn’t give up on me when I had a breakdown and ended up in a couple mental hospitals 3 1/2 years ago — she came and visited me at both hospitals, and in the emergency room. So thank you again. It really means a lot that you are sharing what you’re going through and I’m hoping you all can find some moments of healing amid the suffering.

    • Penelope
      Penelope says:

      Thank you for telling me a little about yourself, Daniel. I’m so glad to know you’re out there, reading the blog. It sounds like you’re on a good path through life.


  14. Ally
    Ally says:

    The prices went up because of your behavior. They are displayed differently based on your IP address, number of visits to the tickets as a gauge of interest, zip code, etc.
    Use any VPN to get around it & source the best price. IIRC Opera has a free built-in VPN. Here’s a lil case study from a VPN trying to sell you on the value of their services for this exact scenario: https://surfshark.com/blog/vpn-airline-tickets

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