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.