Oct 3 2017

About Sol

Today Sol was formally diagnosed with autism, a step that comes as no surprise to anybody who has been close to him. At four years old he’s still not really talking, except in scattered words and lines quoted from his favorite videos. He’s clearly bright—he’s taught himself to read, in fact, at least at an early/beginning stage—but he’s just utterly unaware of, and uninterested in, social conventions and boundaries. And I’m talking boundaries like “don’t dig out all the soil from the potted plants and strew it all across the living room,” or “if you happen to find the front door unlocked, don’t run out in the middle of the street in your diaper and jump around there.” He is Not Like Other Kids.

He’s also sweet, loving, and happy—delighted with himself most of the time, and delighted to be in the world. He’s singleminded in focus when something interests him. He’s physically active and well-coordinated—loves jumping, climbing, and throwing things. He’s cuddly and affectionate. He really obviously thinks it’s pretty great being Sol.

My focus, on parenting Sol, is on supporting him to do the things he wants to do rather than trying to change or “cure” him. I think autism, or brains that work differently in general—neurodivergence or neurodiversity—is a benefit to humanity. I really value the perspective that my friends who are on the spectrum share. So I consider myself a supporter of the autism acceptance movement, and I have resisted the steady drumbeat of alarm from friends and family who repeat the words “early intervention” as if it’s some kind of mantra. Firstly, autism is a difference, not a disease; it can’t be cured and it shouldn’t be stigmatized. Secondly, I don’t want to intervene in Sol’s development, I want to support it.

I’ve done a lot of reading of blogs by adult autistic people about the “interventions” they endured in childhood, and there are some real horror stories out there. Many adults actually have PTSD from the abuse they suffered in the name of therapy. As the Autistic Self-Advocacy Network puts it:

“Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.”

It took us almost a year of navigating a ridiculous bureaucracy to even get Sol diagnosed in the first place, and now that we have? We get to wait another month before we’re formally added to the rolls of the Regional Center of the East Bay, the private non-profit that’s under contract from the California Department of Developmental Services to provide service and support for people with developmental disabilities. I think Sol could benefit from speech therapy so that’s my goal right now, but I would really like everyone to understand that getting services for him isn’t an easy or a straightforward process (and certainly not a quick one).

And most of all I need those close to us to understand that there’s not, like, a magic wand any specialist can wave over Sol’s head to transform him into a “normal” kid. He is always going to have a brain that works differently, and those of us who love him are privileged to benefit from his unique perspective on the world.


Mar 19 2016

Lizard Monster Theology

So Robin’s enduring fascination with lizard monsters (which has so far traced a route through Godzilla, the comic-book villain The Lizard, and the Jurassic Park movies) has now landed him into an obsession with the Egyptian crocodile-god Sobek.

Robin: “Can Sobek shoot crocodiles out of his hands?”
Me: “Well, in traditional Egyptian mythology, no. But you’re telling a story where he can and that’s cool.”
Robin: “I mean in real life.”
Me: “He doesn’t exist in real life. He’s a myth.”
Robin: “No he isn’t.”
Me: “Yes he is.”
Robin: “No he isn’t.”

At this point, sensing that we had reached an impasse, I excused myself from the conversation. I have to admit the idea of shooting crocodiles from your hands sounds like a pretty awesome superpower!


Feb 7 2016

A Good Man (Sam’s Mix)

As a kind of creative counterpoint to the story I posted a few days ago, here’s my Sam-themed playlist: songs in celebration of sleep-deprived fathers.

A Good Man (Sam's Mix) from broadmajesticshannon on 8tracks Radio.


Dec 9 2015

Spirit of the Season

So our little artist is still producing adorable masterpieces. Here’s the scene today:

Robin (produces a very intricate, cut-out, pop-up scene): “It’s a Christmas picture!”

Me: “Oh, how nice!”

Robin: “So you’re gonna see the End of Christmas. Look, Rudolph the Red Nosed Reindeer is eating Santa Claus. And here’s a present in an iceberg, on fire. And Santa’s workshop is on fire too and an elf is on fire with an iceberg on its head.”

Me: “I think you’ve really captured the spirit of the season.”


Oct 7 2015

Goo-Goo Face and Bat

Some kids have imaginary friends. Davy has an imaginary enemy. Whenever something is broken or misplaced in the house, whenever someone makes a mess, it’s Goo-Goo Face’s fault. I have no idea where Goo-Goo Face came from but he’s now a staple of Davy and Robin’s play: any time a villain is needed, it’s generally Goo-Goo Face. Goo-Goo Face is, conveniently, invisible to everyone but Davy.

Davy, by the way, isn’t even Davy at the moment. He’s decided his name should be Bat and we’re all doing our best to honor this decision.

We actually got into this fix because I was trying to explain about trans people in a way a five-year-old can understand. What I said to Robin and Davy (sorry, Bat) is that usually boys have penises and girls have vaginas, but sometimes a boy is born with a vagina or a girl is born with a penis, because it’s really what’s in your heart that makes you a girl or a boy. And then the parents might think they have a baby girl when in fact they have a baby boy, and they won’t know that they were wrong until the baby gets old enough to tell them that he’s actually a boy. I thought I was rocking along quite well with this.

So the artist formerly known as Davy had some questions about what happens then, like, what if the boy has a girl’s name? And I said the parents might have to change the name. And then I said (and this is where I made my fatal mistake, in retrospect) “we thought you were a boy when you were born so we named you Davy, but if you told us we were wrong, then we would let you choose a new name.”

And he said, “I am a boy but my name isn’t Davy, my name should be Bat.”

So now we all have to try to call him Bat, it’s a whole thing right now. I’ve been assuming that it’ll blow over soon but then I read about the case of Loki Skylizard, actual person whose parents allowed him to pick his own name when he was eight. Dr. Skylizard is now Chief of Thoracic Surgery at a hospital in New Jersey so I guess he turned out pretty okay? And in my heart of hearts I have to admit that Bat Phillips is a pretty cool name.


Aug 18 2015

Epitaph

So sometimes, when you can’t sleep, you lie awake thinking about what you want on your epitaph. Right? It’s not just me?

Maybe it’s just me. Anyway, for a long time the top contender has been:

Shannon Phillips
1976-20??
She Ate Well

Because seriously I think that says a lot about how rich my life has been and how filled with happiness: like, if you think about it, we middle-class Americans live in the kind of luxury that Julius Caesar could only envy. Maybe he had a feast of peeled grapes and lark’s tongues, every once in a while? Dude, I eat bananas and coffee for breakfast. I can have grapes whenever I want. I can also have French cheeses and Swiss chocolate and Dungeness crab from the San Francisco Bay. Plus, I have indoor plumbing—well, not right now, but usually.

My life would make Julius Caesar weep with envy.

Sometimes, though, when I’ve had a hard day, I think maybe it should be something more like:

Shannon Phillips
1976-20??
She Did All Right

or maybe

Shannon Phillips
1976-20??
Could Have Been Worse

But honestly, for the record, I don’t care what happens after I die. I want my body parts to be donated anywhere they might do good, and I want my loved ones to ritualize my death in whatever fashion gives them the most comfort. And I don’t want them to spend a lot of money on it. Cremation sounds good. Maybe scatter my ashes somewhere and plant a tree, that would be nice.

Here, I guess, secretly, is the nicest memorial I can think of:

Jo Shannon Phillips
1976-2399
Greatly loving and much loved
She lived deep and died old


Aug 1 2015

Surgery Went Well

Davy’s hernia repair surgery went well yesterday and he’s back home now with only minor discomfort. He’s enjoying unlimited popsicles and video game time.

Sol, unfortunately, has figured out how to get his boot off so THAT’s a problem. Also my computer suffered a catastrophic hard drive failure yesterday; I’m posting from my tablet but updates are likely to be terse until I get a replacement.


Jul 30 2015

Give Em The Boot

sol

Sol got his cast off today! He was sent home with this boot, which is a big improvement because the boot can come off. He’ll be taking a loooooong bath tonight!

And Davy goes in for surgery (if all goes well, knock on wood) tomorrow morning. I’ll be really happy to have that behind us.


Jul 8 2015

Us

Davy: “Mom, I want to draw something that starts with the letter H. What’s everything that starts with H?”

Me: “Well, H makes a “huh” sound, so think of things that start with “huh.” Horse, hat, house, happy…”

Davy: “Happy! So, I’ll draw us.”


Jun 30 2015

Tubthumping

DSCF1685

Sol was a trouper getting the cast put on this morning. The prescription medication works well for managing his pain, and already he seems to be needing it less and less frequently. Yesterday he spent the full day lying listless on the couch, but today he’s insisted on testing the limits of his new (lack of) mobility. He did his best to roll headfirst off the couch, and when we didn’t allow that, he kicked and writhed until we put him on the floor and let him figure out for himself that he can’t walk or crawl. Now he’s working on a kind of half-scoot, half-roll method of locomotion.

Keeping him entertained for the next few weeks is going to be a real challenge. There’s a limit to how many books I can read or clapping games I can play, and he gets bored with TV after about an hour. Blocks are good, catalogs that he can rip to little shreds are good, going for walks with the stroller is good. I’m not opposed to video games but I suspect Sol would destroy something like an iPad in about half an hour; I’m eyeing the new kids’ edition of the Kindle Fire because it comes with a two-year warranty. Anyone want to take bets on how long such a “kid proof” device would last in Sol’s hands?

Because we didn’t have enough going on today, it was also Key Day, the celebration at our preschool for kids like Davy who are moving on to kindergarten. The idea is that they’re each given a ceremonial key to show that they are always welcome back for a visit. Here’s Davy’s key:

keyday_008

It’s a really sweet day. Everyone talks about the special qualities of the kids, and then they walk across a little bridge to mark their transition to elementary school. And then they eat ice cream. Davy was really mostly interested in the ice cream.

Robin got his final report card for the year: it’s Montessori so it’s all touchy-feely and I have to kind of read between the lines, but it seems like he’s doing good in reading but could use more practice in handwriting and math. His teachers wrote: “Robin is a fun loving student and he takes responsibility for his learning each day. This year he has progressed in his focus and has found a balance with his need to be social. Robin has become a self-directed learner…As he continues to strengthen his fine motor skills we look forward to seeing his imagination play out on paper. Robin has made many social connections this year and really enjoys playing with older students. He is working on appropriate boundaries when playing with friends. Robin welcomes leadership roles in groups. Robin continues to cultivate a positive attitude and resilience when faced with disappointment. We have so enjoyed having Robin in class this year and we look forward to his continued progress in the coming year.”

It’s all very California but also, y’know, nice. I’m genuinely glad that the teachers at his school are just as concerned with Robin’s social and emotional development as they are with his academic progress. Next year we’ll see how they cope with Davy!