I don’t really talk about my mother on here too terribly much- though if you talk to me on facebook or twitter or any of the “social” media I do- especially in comparison to talking about her ex, aka Rick aka her second husband. But there’s a reason for that- because she for her part did well with me.  I’m not saying she’s perfect- she does indeed struggle with some of the attitudes that she’s internalized about abilities and supports- but she was still amazing.

Last fall, my posts about intent, and about how the parent movement tends to erase or drown out Autistics, had one person remark that I was arguing that parents are a part of the problem. Actually, I think it was “are the problem” but . . . yeah. I don’t think parents are the problem so much as that their voices and ideas are too often prioritized of that of the PwD that they are parents to. Indeed, I recently attended a rally full or parents with great intentions- intentions of undoing the cuts to services in my state. But they felt it was okay for them to over talk the time limits when self advocates didn’t, to use patronizing language about their adult children, and to erase the efforts of self advocates with Developmental and Intellectual disabilities around some of the laws that protect our rights. Really it’s a perfect example of what the problem is- that we live in a society where these things are considered okay. But I digress.


My mother worked pretty hard at advocating for me in school as a kid. She even got heavily involved in advocacy around service provision, as the county tried to say that I would need shipped to a residential facility (which is an institution for youth, essentially) to have my needs met. My mother worked super hard to keep me at home and in school, even when we were being told that even graduating high school might be a “pipe dream.” (Hint: I’m the only one of my siblings to have graduated HS. My brother has a GED, and my sister is still working on passing the GED.)

She also, during the time that my behaviors were the most difficult until she married her third husband, was the primary wage earner in our household.

But beyond all this, she instilled some of the basic principles that have gotten me to where I am. She respected my wishes and goals about school, and later on- around age 14- about medication. She encouraged me to be involved in advocacy, including asking me to be on my first panel at age 12. But beyond that, she taught me a bit about how it is our civic duty to work for what is just.


Now she has her own needs disability wise. She can’t do the driving she used to without being in extensive pain. She has to do a lot of self care to stay off of medications. While she supports when and where she can, she actually isn’t able to do as much as she used to. And that is fine- it has to be, if we are living the sort of life that matches what we believe about access and self care and  love.

We are relearning what it means to support each other as our needs change and grow. I’ve had my skills and abilities vary greatly in the past 7 years. I can actually articulate the things that happened to me better, and as a result my mother is learning more and more about what happened when she wasn’t there, and what I’ve tried to communicate but couldn’t in the past.

At the same time, though, I’m not as easily verbal as I was. It takes more effort to say things verbally, even though I have more words and a better grasp for them now. While I don’t pretend I have nothing to say to avoid letting people know Words drop out on me, they do drop out more often. (We think this is because of the amount of stress I’ve been under with housing). I also have had my anxiety around phone use spike.

When I was little, I pantomimed what I wanted when the words couldn’t come, and she thought it was a game I played. Now she knows, and I’ve had a chance to explain that it was never a game on my side. As I got older, if I couldn’t verbalize what I wanted I pretended that I didn’t want or need. Now, I can send her a message on facebook at any time, and she will respond no matter where I am- across the country or across the room.

Over the past year, my relationship with my mother has shifted around, become more complex on some levels and yet simpler on others. Simpler, because we now both know that the standards for communication out in “normal” land aren’t suitable. Complicated, because her roles have changed along side her needs. And while her role shift went smoothly on me being my own advocate, being able to balance asking her for help with respecting her own needs as a PwDs isn’t smooth at all.

In example

When I contact my mom over facebook, for a long time I had to initiate. And then one day, from across the room, she sent me a message asking me a question. It wasn’t a complicated one, it didn’t need an elaborate explaination or links to make sense. Indeed, it was something mundane. But the fact that she was willing to ask it in what is essentially “my” lanuage instead of hers and waiting for an answer? That was pretty amazing.

I love you mom. And not just for your kitten pictures.

I reached out to a number of bloggers to write about mothers, relationships with parents and parent figures of choice good *and* bad, and what it means to express familial (family) love as/with Autistic and Neurodiverse people. I will post links later in the week, but this is both for our community and as a huge mother’s day gift.

 I’d also like to remind everyone that it’s International Autism Acceptance Year (IAAY) April 2012-April 2013, and that all this year, various community members will be doing projects around it, thanks to the organizational skills of Paula Durbin-Westby.


4 thoughts on “Mother

  1. I just this and this is very inspiring. I called my mom last night to wish her a happy mother’s day and realized that maybe I need to start forgiving her for the past. Thank you for writing this.

    • Don’t get me wrong, I Don’t think anyone should have to contact or interact with someone they don’t feel safe doing so with- that’s one of the reasons I hope to find something from people who would be writing about family/parent of choice over bio/legal parents- but I’m glad that you feel you are at a point where that is what is safe for you.

  2. This is a very insightful post. It’s nice to get to a point where you can start to engage with a parent as “friend” as well as “parent” (and you’re emotionally ready to do so…sometimes it happens too early, and it’s not fair to a kid that’s growing up and still needs a parent, not another friend). But it sounds like you and your mom were both ready for the shift to happen. I liked it when my mom and I and started to finally become friends, in my late teens. We started to truly appreciate each other’s strengths weaknesses and and understand each other’s weaknesses in a way that we didn’t before.

    • See, this. . . isn’t about that so much? This is about her being able to communicate in my ways- I’m Autistic, and communicating verbally is not natural for me- and/or meeting me half way.

      I’ve been able to see her faults, and still love and apreciate her, for a long time. I’ve had to, because unfortunately the men in my life from a young age have not been as wonderful, and she wasn’t aware of how bad things got. Not even when she was divorcing them. Part of this was that I couldn’t articulate what happened, but part of it was wrapped up in her own issues.

      Also, it’s inavoidable when her ADD access needs clash with my Autistic ones to be aware of our differences. Otherwise I’d what, have to believe every time she was late getting me from someplace was malicious? and that just wouldn’t make sense based on her behavioral patterns.

      (Not that there aren’t other mothers who are malicious- there ARE, and some of them hurt some of my friends. the Myth that all mothers are maternal is one that irritates me to no end, and I’m someone who *did* have a maternally inclined mother!))

      For me, this post is about communication styles/Languages, and about how diverse the expressions of love can be. It’s about how we’ve both grown and learned each other’s communication needs, and found a willingness to engage on that level. To me, this is something parents and kids at all ages should be working on.

      Yes, some of it will look a little different- the subjects of communication are different as kids from what they are as adults- but the core concept of meeting expressions of love at the other person’s communication levels/needs is one that is important across the lifespan.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s