Philosophy is empty if it isn't based on science. Science discovers, philosophy interprets. ~ Albert Einstein
and
Those who have the privilege to know have the duty to act. ~ Albert Einstein
and
Trust your instinct to the end, though you can render no reason. ~ Ralph Waldo Emerson
Somehow these three quotes go together in my mind. I believe in science and I believe in a self-knowing, or instinct. Like Einstein said, they naturally inform one another.
I (we) have made some major decisions during the last few days. The slightly scary but exciting piece is that these are decisions I made on my own, with of course the input and consensus of my husband.
Despite, or perhaps because of, the recent increase in C's medication, he's been having a rough time getting out of the house, going to therapy, and gaining the momentum for playdates. We've still pushed through, but it's been a real struggle. Last Friday after B finished her equine therapy session, C and I walked up and down the long farm road with his therapist. The therapist, like his school team, prioritizes peppering C with hard questions, holding him accountable, and working on avoidance. I've come to the gradual conclusion that I believe a different approach may be better.
I am with C all of his waking hours and some of the sleeping ones. That's not much of an exaggeration, even for evenings or weekends. It's a big struggle to get out of the house every day. I recently ranted to my husband about how C practices doing hard things and works on avoidance every single day, and that I was frustrated that others don't always see this.
Hard questions and accountability are very important for teens and adults. But, with respect to C, he needs a scaled-down approach. This is what I've synthesized from multiple occupational therapists, a highly experienced behavioral pediatrician and his support staff, BCBA consults, books, brilliant friends who also have children, and my lived experience:
C needs to learn how to feel his emotions without letting them become so big they drown him.
C needs to learn how to articulate his feelings and ask for help when necessary.
C needs to build confidence and self-esteem.
C needs to practice getting out of the house and pushing himself beyond his comfort zone.
C possibly needs to be re-evaluated for autism.
His therapy needs to include:
A consistent adult who does not shame him or badger him with questions.
Easy accessibility, re be close by and not trigger to his sensory processing needs.
With someone highly trained in the field.
C is beginning to dread therapy, and that's a big sign that we need to shift gears. My personal therapeutic experience taught me to find a professional who can offer a safe space, occasional wisdom, and most importantly, the reassurance to trust myself. C needs something similar. I've said this before, but I want to build both of my children a community where they have a few safe adults who they can go to for support. At this point, C understands right from wrong and appropriate vs inappropriate behavior. He's highly empathetic and kind. He needs help in feeling safe, practicing going beyond his comfort zone, and handling sensory overload. Equine therapy isn't meeting those needs at the moment. I don't want him to grow up hating therapy or viewing it as a punishment. So, I had a difficult conversation with his therapist, talked with my husband, sat on it for a while, and made the ultimate decision that we're all done for now.
During the conversation with the equine therapist last week, I mentioned how C and I are both dreading the upcoming school year. I threw out the idea of home schooling. She had a very strong negative reaction. I appreciate her perspective, but part of me also recognizes that this is her first year as a therapist, she's young, and she's never been a parent, let alone a parent to a neurodiverse child. I play a game of Would You Rather in my head on a daily basis. Would I rather be deeply depressed, spend the school year fighting the IEP team, and engaging in a battle of wills on a daily basis with C, or is it reasonable to consider alternatives like Waldorf, forest school, home school, etc.? It's not to say that public school definitely won't work, but I'm also being realistic. Would I rather save every penny or be a bit frivolous and spend more money than I'd like to on activities outside the house that my kid will look forward to? Would I rather reduce screen time because that's what I feel I "should" do, or let them watch an extra hour so I can run or write?
Basically, I've had several debates in my head and concluded that parents do all sorts of stuff due to their beliefs. Some of those things I disagree with very strongly, but it's not my place to say anything and those parents aren't breaking any laws. I'm using science, experts, and my own intuition to conclude that I can make my own damn decisions about parenting. What a revelation! It only took 41 years. I can explore alternative schooling for C. I can take a break from a therapeutic approach that isn't working. I can say yes or no to activities I think are appropriate.
To illustrate how we work on avoidance, yesterday we planned a beach day with relatives visiting from out of town. C did NOT want to go and had a tantrum. Had I let him stay home, I would have felt resentful, because I wanted to go to the beach. It was beautiful, sunny, and hot out. I also told him that one of our values was spending time with extended family. C and I read The Flopsy Bunnies by Beatrix Potter at least four times ("One, two, three, four! Five! Six leetle rabbits!"), added donuts en route as an incentive, and promised ice cream at the end of the day. I stayed calm, my husband stayed calm, and goddammit we made it into the car. Of course he had a wonderful time in the waves, and there was only a medium amount of complaining on the half-mile walk from the parking area to the beach. I had fun! My husband had fun! My daughter had fun! Our relatives had fun!
Last night, I talked with C about the family decision to pause equine therapy. We talked about the week ahead, and he shared that he didn't want to do rec camp. I said that was fine, but we'd still need a routine and we'd still need to get out of the house most days to do an activity. Something I said triggered him, because he ran sobbing into his room. He was inconsolable and said he didn't want to tell me what was bothering him because it would make me sad. Oh my heart. I told him he didn't have to share anything, but that if he did I promised not to react. I also told him I was a tough cookie, and he didn't need to worry about me.
He told me he hated his life. Part of this, I'm sure, is the emotional rollercoaster that is being 7. But it's not new, and the sadness is real. Some of his reasons were superficial: I hate it when B gets water in my eyes while we're swimming! Some were significant: I hate school, I don't want to go back! I listened, I kept a poker face, and I rubbed his back. We didn't work on solutions because it wasn't the time for solutions. But his little nervous system eventually settled.
Despite calming down, C couldn't fall asleep until 2am. I gave him multiple backrubs and snuggles while he and his sister listened to a story; my husband read four more Beatrix Potter stories and ate Wheat Thins downstairs with him; C read on his own for 3 hours in his room. I checked on him around 1:30am, we read another story and cuddled, and finally, finally, he gave in to sleep. His doctor mentioned that a potential side effect of his new dosage could be a heightened or overactivated state, so we're calling the office to check in today. Overall, it's more evidence that I need to trust myself in my parenting. No one else does or can know what we go through at home and all the invisible work we're doing. This is a universal truth for every human who is humaning through this world. Although I have knowledge gaps and am not an expert in neurodiversity, I am observant and have learned quite a bit about my son. And I know him best. It would be cowardly not to act on this knowledge. That's why I like Einstein's advice so much: "Those who have the privilege to know have the duty to act." I will continue to seek professional help for our family's mental health, but I'm doing my son a disservice if I don't allow my own knowledge a seat at the table.
There. I went through this post and deleted all of the "I think's." There were a lot.
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