Here’s an excerpt from the last newsletter. (Subscribe, folks!)
January 7, 2020
The new decade has started with a bang here at Apt. 11D. Of course, we don’t actually live in Apt. 11D anymore. We live in an undisclosed location now after learning a while back that one shouldn’t actually name one’s blog after a real life address. Apt. 11D is more of a metaphorical home. But that’s neither here nor there. Let’s just say that things are pretty crazy at home.
My younger son was diagnosed with epilepsy yesterday after suffering a mild seizure last November. I wrote about the details about the first incident and how we found out the news on the blog. You can read it about it there, if you like.
Today, I just want to say how fortunate we are. That sounds crazy, right? My poor kid is saddled with autism and epilepsy. He’ll have to take medication for the rest of his life. We’ll be going to more doctor’s appointments and managing medication. Bad news for all, right?
Well, yes, of course that is true. Ian has handled this news with grace and dignity, and we love him hugely. There’s no doubt that this diagnosis is an added burden on his already complicated life.
At the same time, we know that we’re lucky, because Steve and I can handle our end of the burden without losing our heads. I have a flexible job and work from home. We’re not dependent on my salary to pay the mortgage, so I could stop work entirely for a year to concentrate on Ian’s troubles, if necessary.
Fifteen years ago, when Ian missed the “speaking in full sentences” milestone at age 2, we entered into the world of parenting “kids who don’t fit into neat boxes.” In a yahoo chat group, I asked other parents like me, “how does anybody without an education and time deal with all this stuff?!” It was so overwhelming at that time. Another mom responded, “yes, it’s horrible, but you can’t think about others right now. You have too much on your plate. Just deal with your own problems.”
So, I can deal with this hurdle. I can give myself the time to process this information and keep myself mentally healthy. I can read up on the latest treatments for epilepsy. I can schedule doctor’s appointments without losing a job. I can manage my other responsibility at home — making sure my college kid has his head on straight, keeping everyone dressed and fed, making sure that the house is repaired and sturdy. I can even maintain my writing job by taking on projects with longer deadlines.
I am lucky.
Yet, it is still possible to think about the bigger picture. While taking care of our own situation, I can also manage to advocate for those who are struggling to educate and care for family members with disabilities. Those parents, my counterparts in the Bronx and Newark, are always my people. My votes, my political commentary, any power that I have as a writer on the national stage, is always with them in mind.
Apt. 11d 
Laura wrote, “Fifteen years ago, when Ian missed the “speaking in full sentences” milestone at age 2, we entered into the world of parenting “kids who don’t fit into neat boxes.” In a yahoo chat group, I asked other parents like me, “how does anybody without an education and time deal with all this stuff?!” It was so overwhelming at that time. Another mom responded, “yes, it’s horrible, but you can’t think about others right now. You have too much on your plate. Just deal with your own problems.””
“Yet, it is still possible to think about the bigger picture. While taking care of our own situation, I can also manage to advocate for those who are struggling to educate and care for family members with disabilities.”
Remembering our current discussion about Gwyneth Paltrow, I would add here that an influential person (or a less famous person with lots of resources or at least lots of energy) can make things worse for everybody by rushing heedlessly into activism.
See, for example, Jenny McCarthy/Jim Carrey/Robert Kennedy Jr and their contributions to anti-vaxx. How much better off we’d all be if they hadn’t cared about the “big picture”!
In order to make a useful contribution, you can’t be a total noob. It takes time to be useful. You gotta pay your dues and figure out what the heck is going on before a) telling other people what they should be doing with their kids or b) telling the powers that be how they ought to be helping other people’s kids.
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At a minimum, I think that it’s important to have a real track record of success with your kid before rushing into advocating for a particular set of interventions for other people’s kids (barring actual educational and professional credentials, of course).
(Caveat: Of course, not all kids are the same, so the fact that it worked for one kid doesn’t necessarily have any bearing on outcomes for other kids. Also, there are all kinds of kooky, dangerous treatments that people swear were successful for their kid–chelation therapy, bleach enemas, etc.)
Passion does not equal expertise.
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