Today is Aidan’s 13th birthday! I’m sad that I’m old enough to have a teenager but since I decided to start telling people I’m 28 because I had him at age 15, I feel SO much better! That’s always been a running joke with the Latina Mamis I organize—we subtract a year from our ages as our kids get older since people believe we all have too many children at too young of an age anyway. Oh, those Mexicans!
But I’m thinking about raising a teen with autism because there’s a lot of mess in the autism community this week. Really, when is there not? I mean, we have it in our own households/families: my ex and I argued hyperbaric oxygen chambers for months, he holds my blame still for destroying the GFCF diet—and this was in the days before you could buy everything gluten-free at Whole Foods, which we couldn’t have afforded on food stamps anyway, so I was going down the Asian markets for rice flour and ROLLING OUT flour tortillas in our 600 s.f. East Austin house! But I digress, which is what I always do here at Divorcing Autism…
It’s not really surprising that we in the AU community are not on the same page. Basically it boils down to adult self-advocates and parents and our differing needs AND the ability to vocalize those needs.
When Aidan was 3, I was fortunate enough to be picked to go into a yearlong training for disability advocates on disability history, and policy and organizing techniques. What was unique about Partners in Policymaking was that they paired parents of young children with disabilities AND adult self-advocates. It was the best training I could have gotten at that time because I didn’t only see things from my parent perspective, I was able to see things through Aidan’s eyes with the help of my adult friends with disabilities. Because I was also a community organizer, the ideas of self-determination and self-actualization were already natural for me—it was just that in that setting, I had to apply them to disability and not just race and sex and gender as I had always done.
Now fast forward a decade: I’m still an organizer, I’m still an advocate, but I’m still a mom. Like having any kid (and I am deliberately not saying “youth” and asserting motherly privilege, my apologies to youth advocates), he’s changed me and shifted my goals and dreams, some for the better, and some we can argue about. But it’s always a fine line of letting him be who he is—autistic in every sense of the word and not in the People First sense of the word—and also me being my bitchy Latina Mami self and pushing him and yelling at him and making things stick in his brain so he can hold a job one day. If that means I get a chancla and run after him in the Mexican mami way, so be it.
In the disability movement we talk a lot about quality of life. I, for one, understand parental exhaustion and overwhelm. I am the least patient person I know, actually. Imagine being told 500 times “Do you want rice?” or hearing your kid scream again because someone brushed their shoulder. Yeah, I get it. That does not mean I think it’s okay for a parent to murder their child with autism to “take them out of their misery”. I feel sad for the parent but why are we taking the focus off the child who has serious needs? Parents like us need respite to parent effectively and sanely, and our kids need SAFE homes.
I’m never going to be like the super-enthused woman who was on a speaking panel with me when Aidan was 5, gushing about her son and saying he was a blessing from God and how she wouldn’t have it any other way and how everything happens for a reason. Umm. As parents, we all get what we get. Kind of like how we can’t choose our parents. Shit just happens—in my case, I took a chance and had a baby in our messed up world and environment and with that and genetics, shit just happens. As an organizer, I can look at environmental laws and toxins, etc., etc. for the causes, and I do in terms of some therapies and mostly the law. But there are limits to what I can do and what I am willing to do, to change him.
Before Aidan was diagnosed, I was in an AOL mommy chatroom (I know, AOL, right?) and told a group of women that I wouldn’t knowingly have a child with a disability, that it was just too hard, not fair for the child, blah blah blah. I thought they were all a bunch of pro-lifers trying to convert me and spouting off about how all kids were special and gifts and Bible-thumping and I really didn’t want to hear about how kids with disabilities were amazing. I kept thinking about a child’s “quality of life” and how unfair that would be to bring a child into the world with limitations if you didn’t have to. I truly didn’t understand loving your child no matter what. When I look back at that and think of how limited I was and eugenics-sounding I was, it scares me. (And I’m still pro-choice but as a disability mom, I now GET the pro-life arguments in ways I didn’t before.)
Aidan is Aidan. I’m grateful, sad, happy, confused, bewildered, mad a lot of the time when I parent him. But mostly, I’m just in awe. He had a new attendant fall in love with him yesterday. When people stop expecting him to act like them (you know, make eye contact, TALK, stop making hand movements or vocal sounds) and actually try to get in his world and his brain, they are in awe of him and the way he thinks. He’s innocent and manipulative, has a sense of humor AND an attitude, and communicates in the best ways he can in that moment—in utterances or kicking his legs in a fit. But he’s in there.
That article recently by the AU dad, writing about his son finally talking to him in heaven? Those are not my thoughts (mainly because of the whole heaven thing). YES, I wish Aidan could talk to me functionally one day, you know like I want him to drive and have intimate partners and party all night in his 20s and have a job one day. But I’m just a parent. All I REALLY want is for him to be happy. After I’ve chased him around with a chancla, that is. Today that means fattening cake and ice cream and sugar rushes so bad we are going to be up all night. But that’s what he wants and what I’ve promised. So happy birthday, boy! Here come the teen years, for better or worse.