*phew*

 I attended a workshop on alternatives to conservatorship tonight and I am just over the moon. For practically the first time, I feel like I got what I needed from one of these workshops. I have resources and information that no one else was able to tell me, and I have a sense of how to move forward and prepare so that my daughter will be supported if something happens to me and her dad. All three of us had found the idea of conservatorship for her pretty appalling.

I do wish that most of the important people in her life weren't our age or older. That's something we'll have to address. But meanwhile, if we die in a car wreck soon, she won't be left entirely on her own. 

Ack! My heart is walking around outside my body and it doesn't feel well!

 My family is away on a road trip and my daughter is miserably sick. (Probably not Covid, though it's hard to be sure.) It hurts my heart so much. She loves road tripping with her dad, but I'm the one she wants when she's sick and it kills me that I can't be with her.

My husband will probably go to London again later this year and I was pondering whether to go along this time. The thought of the miserable flight and having to be masked nonstop for long was already a strong mark in the con column, but the thought of my child maybe getting sick -- or us getting sick and not able to get back to her -- pretty much finishes that idea. 

We were going to leave her on her own for the first time ever... in March of 2020. Had a schedule made up with all our friends to check in on her and everything. And I definitely think we still should, but maybe stay on the same continent for the moment.

My kid on "Harold and Kumar Go to White Castle

 "that was one of the best and worst movies I've ever seen."

Pretty much sums it up. 

Oh my

 I asked my doctor if I should do jury duty, given that masks aren't required and I have an immune deficiency. (Not a major one, it's not usually a big deal, but does cause some issues.) And she wrote the fiercest, most scolding medical letter I have ever seen, basically blasting the county for not requiring masks for all to protect at-risk people.

I have had some issues with her over the last many years but sometimes she just knocks it out of the park and I'm really glad she's my doctor. 

Where Do We Go?

 Bo Burnham's "Inside Outakes" has a bit of a song that's basically just "please don't make me vote for Joe Biden" and oh man, am I feeling that right now. I didn't want to vote for him, but I had no idea what a truly terrible choice he would turn out to be. I'm not talking about inflation and the price of gas, which I don't think is within his control, but the terrible passivity around the destruction of democracy, and worship of now-meaningless "bipartisanship," and the utter disappearance of Kamala Harris, who I actually approved of. Not to mention the plight of children at the border, which has barely improved. 

America really needed to go in a new direction and instead it tried to go back to a comfortable (for some) past and it was a huge mistake that I think will be the end of us. The price of gas will likely get Trump back in and then even "blue" states won't be safe.

So.... where do we go? Two aging, anxious adults with a disabled and transgender adult child. My husband has useful skills and he can do his job from anywhere, and we own a valuable home, so we've got that on our side.  We have relatives in Chile who could help us there, and he has colleagues all over the world who value his skills. 

But against that is the knowledge that right wing fascism is spreading almost as surely as Covid all over the world and we could be out of the frying pan into the fire. 

The Times, They Are Kind of Staying the Same

 One of the, probably permanent, changes in our lives from the pandemic is a deep freezer and a bookcase in the hall that's become a pantry. I just stocked it with a massive amount of pasta, since it looks like the war on Ukraine may make wheat prices go up. 

I got over feeling like I needed to save and use everything, but I'm still bulk buying toilet paper and kleenex (an indulgence, but we all have runny noses) and my husband brings home packages and packages of our kid's favorite foods. Worrying about being able to feed her, with her limited diet, was a huge fear.  One that was never realized -- the worst it got was her having to put up with homemade peanut butter cookies instead of chocolate -- but those fears stay with you.

I guess I'm thinking about fears, because my husband is flying to Germany tomorrow and I'm fucking terrified. 

Tough Choices

When my baby was an infant, I used to do what's called exclusive pumping, because we never managed to make breastfeeding work. Exclusive pumping is really the worst of both worlds -- you don't get that special intimate contact with your baby, but you still have to give up hours and hours of your time.

My husband didn't work from home back then, so I was alone with the baby and often faced with the dilemma of her starting to cry while I was pumping. I felt I was constantly having to make a choice between her physical health and her psychological health. And I always chose her psychological health.

Now I'm in kind of the same situation again. My husband and I are both in higher risk groups for the coronavirus. We're lucky that he works from home and "social distancing" is pretty easy. Except... my kid has a regular routine of seeing her friends, at their house, twice a week. And they're not nearly as concerned about being careful as us, and their mom works with the public.

And once again, I'm going with psychological health. We've made some adjustments -- her respite care worker isn't taking them out to a restaurant as usual. But all this change and disruption is already so hard on her, I can't bear to cut her off from the things that help keep her sane.

Still debating myself over whether I should go to ballet class and the potluck, which are what help keep me sane.

Gosh, it's been a while...

It's been an extremely packed last year for me, especially with my child turning 18 and all the complications that brings for a developmentally delayed person, but this is the only news of particular relevance: my child also came out as trans, so I'll be talking about my daughter from now on.

My daughter also moved out, though not so very far out. :-) She's living in our "granny unit," and getting some experience at taking care of herself. It's a pretty good arrangement: more privacy for everyone, but we still get to spend time together, and help her with things she's not ready for yet.

I'm still having some adjustment issues, though. Last night I asked her to get to an evening meeting by bus, because her father and I wanted to spend some time together. I guess I didn't really think she'd have the executive function together to pull it off, though, and was startled when I realized she had actually left, and I didn't know if she'd gotten there okay. It's hard-wired in me to need to know where she is!

Also... I miss her. Even though she's right next door.

Letting go is hard.

30 Days of Autism Acceptance, Day 4

Day 4: Reactions to 'coming out'

I don't have much to say on this topic, because mostly I don't. I've told Twitter and my immediate family. My therapist thinks it would be good to tell my doctors, and maybe it would, but I just can't face it. I hate being questioned and I know this would bring on a barrage of questions, and probably a lot of disbelief. I had enough of that when my son was little, and I couldn't get anyone to take my concerns about him seriously.

30 Days of Autism Acceptance, Day 2

Day 2:

What I love about being autistic is... hmmm. This definitely requires some thought.

I love the pleasure I get from stimming, especially visual stimming. I love sensory experiences, though proprioception issues have ruined some of them for me. (Spinning and swinging both now nauseate me.) I love having a good memory and hate that I'm losing it as I get older.

And I love having insight into my son's needs.

People Are Exhausting... And Yet

I finally made it to London, a few months ago, solving the problem by taking all my family with me.  It was hard and wonderful and exhausting and awesome. London is probably not my soul's city as I thought it might be, which was a little sad to realize, but better to know, right?

One of the things I've been pondering since the trip is how strange it was to be around such... distant people. Unfriendly isn't the right term, because I could always ask someone for help if I needed to, but people generally ignored each other in public.

I don't remember noticing this in New York. I'm not sure if it's because I felt familiar with the pace there, having lived there when I was young, or because we were always in such busy areas it wasn't obvious. Probably the later. Walking around a residential neighborhood in London, the lack of acknowledging nods/smiles was really obvious.

And if you'd asked me how I'd feel about that, I probably would have said it would be great! Because having to put on friendly normalcy can be really hard at times. And yet, I really found it weird, and lonely.

This came up for me today, because I bought shirts for me and my son that say, "People are Exhausting."   And I almost wore mine today and then I realized, it might stop people from making casual chit-chat with me. And though I hate obligatory "how are you"s, I like a bit of chit-chat. I've gotten good enough at it that it's a pretty small outlay of energy, as long as I'm in an okay frame of mind, and in return I get to feel some harmony with the people around me. It makes the world feel more comfortable.

Spring and Fall to a Middle-Aged Woman

me: "Oh boy! Today I get to change from our cold weather pillowcases to our warm weather pillowcases!"

(At times like this, I wish I could find a gif from the Simpson's vacation episode, where Lisa says, "Yeah, it's going to be really fun for you changing a different set of sheets" and Marge replies, "You're joking -- but it is!")

Most of my childhood, during which we were both very poor and moved around a lot, was pretty minimalist. I literally had no idea of what a mattress pad was until I met my husband when I was 21. We didn't even have changes of sheets, much less seasonal ones.

Something I've learned slowly over the last 10-15 years is how to adjust my environment. In the place we lived before our current home, my husband would sometimes come home to find me almost passed out from the heat. I had no idea how to deal on hot days.

Our current home is much, much hotter. After a lifetime spent living in virtual caves, I wanted a lot of sunlight, and I got it. But I've learned what to do. At certain times of day, you open this window or close that one. You open and close curtains. You change clothes. You turn on a fan or take a cool shower.

I think it's partially that this is the longest time I've ever lived in one place -- our previous home together being the second longest -- and so I've gotten a sense of continuity that I never had before. "This is what happens in Spring. This is what happens in Fall." And I have money to buy things now -- jackets for when it's cool, jackets for when it's cold, flannel sheets -- and places to store them.

But I think it's also that I'm easier with transitions. Not just the more obvious ones like seasons of the year, but the times of day. I take the time now to think about the weather. It doesn't bother me any more to change clothes or add or subtract them.

I might not even notice all this stuff if it weren't for my resident mini-me. (Who is now more like a maxi-me.) I hope he'll get here someday too.

Put On Your Yamulke...

I grew up with the knowledge that I was Jewish, a fondness of Israeli dances, and a small vocabulary of Yiddish exclamations and curses. That was pretty much it. Although I've tried at various times to add more Judaism into my life, it never really took. My husband took "how to Jew" classes with me when we were newly married, and he's the one who remembers stuff, so he's the one who cooks the latkes and explained the concept of Tzedakah to our son this year.

When our son was in a Jewish preschool, it was much easier to remember and celebrate the holidays. But he's in high school now and we've gotten pretty lax.

The one thing we always do is the very minor holiday Hanukkah, and it's not to compete with Christmas, which my husband utterly adores. I think it's partially because it's easy, and partially because it's pretty -- lighting candles and singing blessings, what could be nicer? -- but also because as I get older, Christmastime is the time of year when, paradoxically, I feel the most Jewish. I'm always grateful when they fall sufficiently far enough away from each other that the Menorah lights aren't overshadowed by Christmas tree lights.

A Family Guilt-Off

The other day, my son and I were working out together, and he asked me a question about whether I would change anything about how I've been a parent.

As it happened, I was totally primed for that question. While seeing him off to school that morning, I had noticed someone riding a bike with a kid's bike attachment behind it. And it reminded me that I had always wanted to get one of those for him, but it hadn't happened. And I realized... I don't care. It didn't matter. And I felt really good about how much I'd let go of expectations and wishes and accepted how things are and that the past is past.

So I told him that and we had a really good conversation.

But the thing is... he kept asking the question of me and his father. At first I thought it was because it was such a good conversation starter before, but it started to have undertones. Undertones of "if you and dad had done this, maybe I wouldn't be so messed up and unhappy now." Then the undertones became actual overtones. And I started to get really mad. And insist that no, we couldn't have done things any differently than we did.

Today, I was chatting with some people on twitter about early days of parenthood, and someone said this: "The first few years I think guilt was my default emotion."

And I realized, this is why I've been so upset about my son's questioning. Because I lived with guilt for so many years, about what I did or didn't do to completely fuck my child up, and I had finally worked through a lot of it with my therapist. And now it was all coming back to me.

I went and told this amazing insight to my husband and he said, essentially, "Yeah, I know, and that's how I explained it to Son."

Overheard at the Gym

gym employee: "Hi, how are you?"

gym patron, through gritted teeth: "I'm here."

A woman after my own heart!

Upside Down and Inside Out

My family saw "Inside Out" the other week, and it really struck a chord in all three of us. ("Lava" I pretty much loathed -- for God's sake, if you're going to tell a story in song, get a decent songwriter!) Son was intrigued by the idea of all the different emotions working in the control center and we had some great conversations about how seemingly negative emotions can actually be helpful, unless they become monsters -- like fear becoming an anxiety monster, for example. Hub saw a metaphor for depression in Riley getting cut off from both joy and sadness.

What most spoke to me was the islands that form personality, and their destruction. This is pretty much how my life has been for the last 10 years. I spent a lot of time building up some wonderful islands -- "salsa dancing island," which also really built up my neglected "friendship island"; "cooking healthy foods island"; various social networks. And then they all started crashing down on me, leaving me with less and less.

My big question about the movie was, which came first. Did Joy and Sadness and the rest make things happen that affected Riley, as depicted? Or did their adventures follow Riley's feelings? It makes sense for me to wonder that, because for years now, doctors have been telling me that my exhaustion is caused by depression, while I've believed that I have an underlying undiagnosed health issue causing the exhaustion, which brought down all my islands, which caused the depression.

Either way, it helps to have a metaphor.

Just As It Should Be

A little over a year ago, I started blogging about autism by writing about my son's uncomfortable reaction to an Autism Speaks fundraiser at Toys R Us.

Today, my son is working on a youtube video about how autistic people are treated in the media.

He's speaking for himself now.

I'm Miserable, And You?

The phrase "How are you?" makes me deeply uncomfortable. Although I've trained myself to answer in a non-committal way -- having, after decades, finally learned that it's not really a question and it's not supposed to have a genuine answer -- I still have trouble reciprocating as I'm "supposed" to. Every time I make myself say, "Fine, and you?" during a business transaction, I die a little inside. My unconsciously developed preferred method is to deflect with something true and generally acceptable: "How are you?" "Okay... isn't it hot today!"

I was reminded of this today when a poster on Twitter, who's recently suffered a terrible loss, talked about it. What a horrendous sting it is to hear that at a time when you're in great pain, from someone who doesn't really care about the answer and whom you probably wouldn't want to discuss your grief with anyway.

How very fucked up it is that autistic people are trained to behave in socially acceptable ways that are so messed up to begin with. "Welcome to the neurotypical world, now start lying!" I do understand the need for some social lies, but it's perfectly possible to be polite, even friendly, towards someone you have a transaction with without needing that false interaction.

I May or May Not Be Leaving on a Jet Plane

I'm tentatively planning a trip to London with my mom this year. I say tentatively, because I'm not actually sure I can do it -- leave my husband and child behind for 10 days. A few years ago, my husband and I had a week in New York, while my mom babysat. It was the most thrilling, romantic, fun, enjoyable second honeymoon possible, and yet I still cried pretty much daily over how much I missed my son.

My husband takes fairly regular business trips, which I've gotten used to, but the feeling of him being in China was a whole different animal to the feeling of him being in Vancouver or Philadelphia. I felt the distance. I know I will feel the distance even more when I'm the one on another continent.

People don't get this. I have not been able to find a single person I can talk to about it who understands or even takes my feelings seriously. "Oh, you'll be fine," everyone says.

Back when I was an adolescent, I was mocked by teachers for my attachment to my mom. A counselor I saw as a young adult obviously thought it was fucked up. I see it in my son now and think, yes, we do need to help him move away from us and find people outside his family to care about. But I don't judge or blame him for it. It's who he is.

Today I just feel like saying a big fuck you to everyone. This is who I am and there's fuck all I can do about it, even if I wanted to.