I've been messing around with accounts and things, trying to move away from the big G, and was afraid I'd lost the ability to access this blog. Luckily I worked it out. 

Just Want to Preserve a Memory

 Me, standing knee deep in absolutely freezing water in the camp swimming hole. My daughter looms up behind me, puts her hands on my shoulders and says, "Nice little mom you've got here, would be a shame if anything happen to her."

More Quotes from I Will Die on this Hill

 "Perhaps one of the most frustrating parts of the term 'autism parents' or the more gendered variants 'autism mom' and 'autism dad,' is that many of these parents elect to use identity-first language for themselves, while denying autistic people use of identity-first language for themselves."

Ding ding ding!

"As a parent, you've always done everything you can to protect your child, and that doesn't end with an autism diagnosis. Protect your children's privacy and bodily autonomy. Learn to speak about support needs in a way that will not be hurtful to your child, should they overhear you."

I am in this passage and I really wish I wasn't.

"Autism is a neurodevelopmental disability.... It's not a disease or an illness. There is no expiration date on the diagnosis. Your child is not going to be more of less autistic based on whether they started a specific therapy at a certain age. Don't allow a profitable industry to push you into an action that you have not researched thoroughly. If the autistic community says something is harmful, listen and research. If the autistic community says something is helpful, listen and research." 

Need to cut and paste this one for parent forums.

"...we get sucked into a world of normalization, where we're convinced that this therapy and that therapy will 'work,' that it will make out child 'while' and 'fully normal.'... So, enter an autistic advocate, who on an unconscious level is already undermining 'the dream' just by existing, because that autistic advocate is a grown-up fully autistic version of the parent's autistic child.... to be shown that autistic children grow up to be autistic adults who are still just as autistic can be a shock."

Not something I personally relate to, but I found it an interesting point.

I can't find a specific quote for the last point that struck me, but it was about how people act like an autism diagnosis is a license to ignore everything that's known about child development, such as the fact that what's basically a 40 hour work week for a young child is severely detrimental.  An autistic child still has emotional and psychological needs that must be met for them to thrive. 

Anyway, read this damn book! 

"I Will Die on this Hill": Where Was This Book Twenty Years Ago?

 (Or any decent reading on autism for that matter. Man, Doctor Google was cruel in the early 2000s!)

I Will Die on this Hill was exactly the book I've been needing, as someone who often feels uncomfortably caught in the Uncivil War between autistic adults and parents of autistic children. (With I admit, perhaps from being so late diagnosed myself, a tendency to sympathize with the parents.) It just lays out so perfectly how both sides can listen to and learn from each other, and why they need to.

I want to save some quotes I found especially resonant, in no particular order (and somewhat edited to spare my fingers.)

I live at the convergence of two dualities in which parenting autistic children overlaps with being an autistic person. Sometimes these factors "play" well together. Other times, they seem to compete and/or work against one another. In either scenario, overall society is not as accepting nor as accommodating as we need it to be, and that can be hard. I have learned that being autistic does not magically grant me a sense of comfort if my child is hurting and in need and I can't always discern what's going on so that I can help. Similarly, being a parent of autistic children doesn't automatically conjure up a personal, invisible barrier shielding me from the realities that autistic adults without children face.

Yes. All of this.  (A frequent wry moment from my visits to parent support groups -- being the only one there who can't find someone to talk to.)

In practice, a social model of disability referencing a relational worldview would treat and autistic child quite differently than we currently do. The social model would explore a child's needs in a way that builds trust... Rather than using deficit-based language that makes children feel bad (yes they hear it, and yes they feel bad), evaluators would use affirming, strengths-based language while identify needed support.

"Yes they hear it, and yes they feel bad" -- oh man, we screwed up so royally in this regard. Take it from me, a person who seems in "their own little world" is still in yours.  

Autistic adults need to internalize the fact that, overall, non-autistic parents of autistic children are universally whiny, narcissistic 'autism warrior' martyrs who resent their children--even though youmight perceive them as such sometimes. Neither are they inherently angelic 'special' parents who should be lauded for their very existence, even though you might percieve them as such sometimes.... Regardless of how autistic adults might feel about non-autistic parents of autistic children, these parents ain't going nowhere--not when it comes to their children whom they love. No matter how much advocacy you do and how much you care, that parent and their children are a package deal, period. 

Your values do not have to change, but what can change is your perception of anner of engaging with the people who matter so much to the children in our community--their families, which include non-autistic parents. You must remember that they are human beings, who might not always say things the 'right' way, who are surrounded by hordes of misinformation, navigating circumstances in which they have no blueprint and no intrinsic knowledge, all while trying to ensure their children are cared for and have their needs met.

I don't want this to get unreadable, so going to stop here and hopefully do a part 2 or more.  

 

*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. 

Yay, For Once We Weren't Thrown Under the Bus

 My husband and I went to a show recently, in a city known for its strong disabled community. There were quite a few people there using mobility devices, and he and I, being larger people, both appreciate the wider aisles and large, comfortable seats.

It took me a while to realize another way in which this venue was disability-friendly: it required vaccination cards and masks. We've been getting out more lately, and that's become increasingly rare.  We always wear N95s, but having others masked as well made the experience so much less anxiety provoking than usual. 

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. 

Everythings Going to Be... Pretty Shitty, Apparently

 (spoilers for season 2 of "Everythings Going to Be Okay") 

I've watched the first two episodes of the second season of "Everything's Going To Be Okay" and am just beyond furious. I can't believe I didn't encounter screams of outrage about this on Twitter. To create a wonderful relationship between two autistic people, actually played by autistic actors, and then destroy it with the most cliche of sit-com metaphor jokes -- Oh no! Matilida is STRAIGHT! -- is an absolute slap in the face.

It's not that it's inherently a bad storyline -- both characters are still quite young, it's easy to make mistakes with your first relationship -- but there's a sensitive and caring way it could've been handled and this was the exact opposite of that. 

Then there's the fact that they haven't addressed how seriously her family let Matilda down in New York. There is a scene where she blames them for it, but it's mostly nonsense and is immediately called out as nonsense by her sister, "that's just from some show she's watched." (Paraphrased.) The real truth, that Matilda's family is fairly wealthy and not one person has thought to use this useful fact to get her help in achieving her goals, is infuriating and unaddressed. I understand not having the drive or skills, God knows, but money can solve a lot of problems!

Finally... it's just bad. Like terrible improv. The characters just stand around being goofy at each other. It's kind of cool that they chose to acknowledge the pandemic and lockdown (I don't know if I would've thought that if I'd watched it when it first came out) but it's still a television show. There has to be a sense of pace and movement and intention. There's absolutely none.

Edited to add -- I've done some further reading and it sounds like they get a lot better in how they approach this relationship, so maybe I'll keep watching.  Episode two is just freaking unforgivable though. 

Arrgh.

 Ooof, I messed up the other day.

We were hanging out at a beach, and my friend's kids weren't into playing, so my kid was feeling really lonely. And I noticed this boy talking to an adult about Legos, who set off my a-dar. He was wandering around, also seeming lonely, so I persuaded my kid to ask him if he wanted to do something.

It's been so long since I've tried something like this, and I totally didn't take into account how it would feel to an autistic teen. He handled it much better than my own kid would've, very politely, but he was obviously startled and I hope it didn't freak him out too much. (Especially since my kid is huge.) Maybe someone with more experience facilitating could've made it happen, I dunno. 

I feel so bad, setting my kid up for failure like that. 

Parenting worries

 I watched "Allen vs. Farrow" yesterday, my stomach in a knot of grief and horror for the people who had to live through that. And anger that I had been so manipulated by Allen's powerful media machine, to the point that I had no idea about this case while it was going on. And also... a touch of fear. 

When family friends talked about how weirdly Allen interacted with his daughter, it hit alarm bells for me. (Note... I'm absolutely not trying to excuse Allen or disbelieve his accusers. The evidence is utterly damning.) Because my relationship with my child often felt weird. She needed attention in unusual ways and she gave attention in unusual ways. (I shouldn't put that in the past tense, it's still true, perhaps even more so now she's an adult.) And I was (and am) always aware of how it might look to the outside world. My mom friends and I, a rather unconventional bunch all around, always used to joke about CPS visits in a way that revealed we were always a little scared it could happen to us.

When my daughter got appendicitis, the doctors were visibly suspicious about why we hadn't brought her in sooner.  Since she was officially diagnosed, they accepted our truthful explanation, that she was under-reactive to pain and not always able to express her feelings, but it was a reminder that our parenting could look weird/wrong/bad. What if she hadn't been diagnosed? I don't know. 

It's still not entirely comfortable. Trans people are under attack in the U.S. My daughter's aide offered to write a letter for us for a "safety file" that parents of trans children keep. I said that now she's an adult, I don't have to worry about CPS anymore, and she reminded me that there's an APS.

(Which is not a bad thing! Unless the law is changed so we're bad parents for supporting her transition. My heart aches for parents in Texas right now.) 

I told my husband about the show making me feel like this and he got it completely.

Hard Times

The other night, in a moment of rage, my kid yelled that her father and I had failed her as parents for her entire life.

Extenuating circumstances: she had been missing one of her meds. And of course, the world. And she hasn't lived long enough to know that that it's really, really destructive to hit someone you love in their most tender spot during a fight. Maybe she doesn't even know what a tender spot it is. I managed not to make the obvious, unforgivable retort, because I do know.

But I'm having a lot of trouble forgiving her. I'm angry because I feel like we've done nothing but give of ourselves for her her entire life, no matter what it cost us. And maybe also because, in some part of me, I believe she was right.

That escalated quickly...

I'm taking my daughter out of school tomorrow. I don't care if she flunks. They've got their heads buried in the sand.

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 Acceptance Day 3

My diagnosis/discovery story:

My story is boringly similar to other adult-diagnosed autistics. I had always felt different and had a hard time connecting to people -- and though I didn't really realize it at the time, was prone to meltdowns. But I had many issues to attribute this to: Living in a counterculture; moving around constantly; a childhood filled with neglect at best and abuse at worst.

And then I had a child, and endeavored to give him the most secure, loved, comfortably middle-class life possible. Nice home, which he's lived in since he was born. Loving parents. Christmas and Hannukah and Easter and Passover. Plenty of everything, but not to excess. Right out of one of my favorite children's books.

And nonetheless, he was basically me. The sensory needs, the anxiety, the odd freakouts. Like me, he was very happy and friendly and open when young, and then grew lonely and closed off and suspicious. Like me, he was intelligent, but had some communications issues. (I was a late talker, which no one thought anything of at the time.) Like me, he had a desperate need to chew on things. (I am so envious of what's known and available for this now. I chewed on my hair, the hands and feet of dolls, and pen caps. I hate to think how many chemicals I ingested.) Like me, he had a much easier time getting along with adults than other children.

He was diagnosed when he was two, so I had plenty of time to read about autism and notice all the ways in which I had been similar. I sought out an autism-friendly therapist, not really sure if it was for him and me. As it turned out, I started seeing the therapist and they diagnosed me. (I sometimes feel guilty about this, for "hogging" my therapist, but I'm not sure my son would be open to it anyway.)