Saturday, March 23, 2024

"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.  

 

Tuesday, November 15, 2022

*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. 

Tuesday, September 27, 2022

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. 

Monday, August 1, 2022

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.

Tuesday, July 12, 2022

Friday, July 1, 2022

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. 

Wednesday, June 29, 2022

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.