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Looking for E Is For Edna

All I do now is study. Last night my dreams were about making a prima facie case for defamation. I wish I were joking.

This semester has been a blur. We had a party for Aidan. Really for his friend Gonzalo. Gonzalo didn’t come and his mom won’t call me. But that’s cool. We’ll win them over, Aidan and I always do. IMG_0314

I’ve gained muscle and am close to being back to my normal weight after two years. But then three days ago, I got tangled up in my media cords–DO NOT ASK–and fell hard on my dresser and bedpost, with my laptop and hard drives on top of me. I woke up the whole house and hurt my good foot.

In La Gloria spirit, I hope to be running again by Monday. In Maui. Don’t be jealous, I will be doing multiple choice questions and essays while I’m there. Okay, it will totally be better because it’s Hawaii, who the hell am I kidding.

So yesterday, during my 15-hour day at school (and the semester and classes are over, seriously, what is going on?), a friend posted this My Parents Are Dead and My Sister Is Disabled. An article by a sister and caregiver. I liked her spirit and not giving up on her sister OR herself.

Her story is not unique–California is one of the best states for people with developmental disabilities. I don’t say that lightly, as I work with people all over the U.S. and do have some insight. But that doesn’t mean there is any less advocacy to do here, or anywhere. There’s the daily toll of asking/begging/pleading/filing/complaining/calling/writing/yelling/fist-pounding/arguing over basic services that *should* be available.

Making sure his teacher didn't miss anythingFor instance, while I’m SO excited in July to be done with exams (!!), I also have my kid’s insurance battles, regional center battles (that will likely go to hearing), and school district battles that I have to manage. Then there are clients who need my help and are waiting for me to be done with school this semester so they can hire me for their own battles.

And that’s just July.

I envy those who don’t understand what I’m talking about. We plan outings around rooster commercials at the local store that might set my son off or a toddler’s voice that really hurts his ears.

I talk really loudly to him in public because I’m tired of the stares and it’s best if people know right away that we’re different and give us a wide range, because if I see another kid looking at him and whispering, or a parent doing the same, I.Will.Go.Off.

The way I see it, I’ve never conformed, so why would I expect my baby (haha, he’s a teenager) with autism to conform? But it’s isolating at times, especially when you can’t even go to regular functions/the corner store. Or your OWN FAMILY forgets your kid has feelings/needs and desires a connection to others and ignores him. It’s kind of a pain to learn and accommodate to him, so why not pretend he doesn’t really care about others since he’s not really talking anyway? It’s easier for them to think that, isn’t it?

Oh, if Aidan could talk. I would hear some stuff. But don’t ever feel sorry for him. He has his mother’s spirit. He’s a fighter and a little-bit-crazy. Watch out for him, he may be the best disability rabble rouser out there. Or he might just play drums in his own band and tell you all to go to hell. And I will smile proudly.

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Speaking of disability issues, I’m also Mexican (American) and there’s the issue of me holding on to my only child/son for dear life (“DON’T GOOOO MIJOOO!”) and never, ever, ever, ever letting him go because it’s totally normal (not really, but yes, really) for him to be in his 40s and living at home with Mami, so do I really want to sit through another (white) independent living workshop? And tell people, no, I don’t want to go to a disability 101 workshop in Spanish. English is my first language, so where is the disability stuff that speaks to someone like me?

Oh, that’s right. Even mainstream disability stuff is “other” in this world. So our experience and needs are the sub-other. The other-other-other.

As a caregiver, you learn to do things yourself. And when I say that, I don’t mean just for your kid/family member, I mean in forming your own communities and networks so they can thrive. One day, without you. There’s a reason I have the friends I do–it’s so we can form co-ops and businesses and orgs on our own for our loved ones with disabilities (yes, dear friends, I have an ulterior motive for all of you, you should all be used to that by now). Use the faulty federal and state and county stuff for what it is and do the advocacy, but ultimately we do it ourselves.

That’s transformative power/organizing and while there are other ways to do it, this is the only real way in my book–not FOR others (the social work/charity model), not legal advocacy (yeah, I know I’m in law school, ironic, huh), not policy/systems work, not all that. They all have their place, but that’s not it, for those of us who have loved ones with disabilities and live it every day.

So I am looking for this sister-caregiver. I think we could do some stuff.

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