Archive for July, 2016

A Word on “Warrior Moms”

July 22, 2016 12 comments

Warrior Mom: it’s a title many parents claim proudly, and a term most autistic people react to with horror and fury. Why?

Well, let’s start with the dislike. Many in the autistic community associate this term with a particular (and largely American) parent community that refuses any concept of autism acceptance. In this model, mothers are waging war against autism itself, avidly seeking cures and preventions, viewing their children’s condition as tragic and wholly undesirable. Autistic people, understandably, view this as a war against them, their very existence. It hurts to think that their own parents wish that they had been born different… even if it is only to spare them the struggles they face. They hate the implication that parenting autistic children is inherently a struggle, because that makes autism itself seem like a horrible thing. There has been a lot written about this elsewhere, so I won’t belabor the point.

But there’s another interpretation of the term “warrior mom” as well, and I think it’s a valid one. The distinction is crucial: both see themselves as fighting for their children, but while one type is fighting to “fix” what is “wrong” with their children, the other is fighting for their children’s right to exist as they are and have the best possible autistic life.

And it is a fight, make no mistake. It’s hard enough to give any child a good life, but parents of disabled children must go far above and beyond. I see many of my clients’ families waging this war constantly — and yes, usually it’s the mothers who are on the front line. This is a war against the judgment of strangers and family members alike, against school systems that drag their feet on providing reasonable accommodations, against professionals skeptical of these kids’ talents and potential, against bullies of all ages.

These moms are warriors because they make millions of phone calls trying to get through to someone who can actually make a positive difference in their kids’ lives. They are the ones calling for IEP meeting after IEP meeting, just trying to get their child into a classroom that doesn’t make them miserable. I see mothers who don’t speak English as their primary language struggling through legal papers trying to make sure they don’t miss a single accommodation their child has the right to have. They take time off work for classroom visits to make sure their kid is being taught at an appropriate academic level. 

These moms are tenacious. They spend years clawing their way up waiting lists for the best PTs and OTs and accessible summer camps and the teachers that other families love. They drive for hours to visit the one provider who is actually helping their kid’s digestive problems, then spending another two hours on hold trying to convince their insurance company to cover the visit. They fight their homeowners association or landlord’s rules so that their kid can have a trampoline or kiddie pool or companion animal or whatever they need. 

These moms endure a lot. People yell at them for not “controlling” their child, kick them out of places for being disruptive, and deluge them with well-meant but infuriating advice. They often have to fight against their own personality or their own cultural norms in order to advocate for their children. The work is, of course, worth it — but that doesn’t make it any less exhausting, intimidating, or overwhelming.

So this is why, unlike many in the autistic rights community, I don’t automatically get angry when I hear terms like “warrior mom” or “super-mom.”  Because plenty of mothers truly deserve those titles, for reasons that don’t reflect negatively on autism at all. So let’s put the blame where it belongs: on the society and systems that make life harder on all of us, autistic people and parents alike. And let’s work to change it. Because no mother should have to become a superwoman just to get their children’s needs met.

Categories: Disability Rights

Brief note on the events of the past week 

​I don’t often get around to posting about current events, but this time I will. 

Those were human beings, every one. 

Every Black victim, every cop, every protester, and even the shooter. Those were people. Every single one was somebody’s baby once upon a time. Every one of them laughed and played as a child. Every one of them has loved someone — a parent, a friend, a mentor, a lover, or a child of their own — at some point in their lives. No matter what else those people did and thought and believed during their lives, they were humans, one and all. 

Every death was a tragedy.

Categories: Disability Rights

I Know It Was Meant Well….

July 3, 2016 4 comments

I’d like to start off by saying I’m sorry for calling out a total stranger in this post.

I know there are parents out there who will wonder why I’m picking on a mother whose intentions were obviously good. And there are autistic people who will think I should be much harsher in my judgement, who will want to remind me that good intentions are not enough to excuse hurtful words.

But this isn’t about a person. It’s about an action. You could even call it a behavior. This mother did something hurtful without being aware of it, and I had to bring it up, to caution others against the same mistake.

It’s a chilly day, but my client’s grandfather takes us to the beach anyway. She loves swimming, but also enjoys just playing in the sand. This is one of my “severely autistic” clients– 9 years old and completely nonverbal– no speech, no sign, very occasional use of a handful of words via iPad. She’s clever, though. But then, I think all my kids are brilliant 🙂

We put out a picnic blanket, and we play. We make a big pile of sand and take it down again. She rocks and flaps and squeals with delight. Because she’s generally very sensitive to touch, it’s never occurred to me to offer her any physical contact besides the basics– holding her hand, helping her dress, that kind of thing. But her grandpa comes over to tickle her, and to my amazement, she loves it. So I tickle her too, and the three of us laugh.

It’s a late autumn day in San Diego, and there are plenty of people in the water despite the cold: surfers and boogie boarders in wetsuits, a handful of children playing in the shallows. A boy about the same age as my client has finished swimming and sits a few yards from us with his mother, wrapped in a towel.

His mother comes over, and I’m a little surprised when she speaks to me.

“Hi! I’ve been watching you playing with your daughter, and I just wanted to tell you that you’re doing a wonderful job,” she says, “My son is like her, and I know that it can be so hard. But you’re doing great.”

I know. She meant it as a compliment, and as a moment of parental solidarity. She was thinking that I probably get a lot of weird looks or glares or criticism from other parents, and she wanted to offer me something different. And I appreciate that.

But there’s one problem, and you may have missed it.

She said that it was “so hard,” obviously referring to raising an autistic child. That’s unfortunate, but understandable. Raising any child is hard, and raising one with disabilities is often harder. Or maybe she didn’t even think it was that hard, but assumed I did.

That wasn’t the problem.

The problem was that she said it right in front of the child she was referring to.

In front of a child who cannot speak in her own defense, cannot ask for reassurance that she’s loved, cannot ask “what did that woman mean when she said…?” A child who has probably overheard a million times that she is difficult, or a problem, or heartbreaking, or any number of other variations on the same theme.

And that is unacceptable.

I know it wasn’t meant that way, that the mother had no intention of hurting the girl’s feelings. She probably didn’t realize even it could hurt the girl’s feelings, and that speaks to an even bigger problem.

She just assumed that the child in front of us couldn’t understand, or wasn’t paying attention. Maybe the girl was looking into the distance and humming, which typical kids do when they are not paying attention. But most likely, it was just the fact that the girl was obviously autistic. That alone was enough to make this mother fail to notice that she was saying something hurtful in front of the person she was talking about.

This tendency to talk about children in front of them isn’t limited to autistic kids, I know. Plenty of adults talk about neurotypical kids, too, and say unkind things in their hearing. That isn’t right either. But disabled children are so much more vulnerable, so much more likely to overhear that they are a burden, a tragedy, a hopeless case. That parenting them is so hard. And they take it to heart.

I suspect most of us remember how awful it felt to disappoint our parents, or make them sad, or believe that we made life harder for them. Do you also remember how easy it was to get that impression from a single sigh of frustration, a shaken head, a few snappish words? How long did you worry and fret over a single criticism or an argument you overheard your parents having? What if people often said you were so hard to raise?

How often does my client hear that? How much does she understand? I have no idea. But I’m pretty sure it’s more than most people think. And because she has no way to tell me, I must assume she is understanding, paying attention to, and worrying about everything.

I wasn’t about to get into all this while babysitting, especially since that conversation might also hurt my client. So I did what I always do at times like this. I did my best to counteract any possible negative effects. I gave my client a huge hug and a big smile.

“Actually,” I told her, “I’m not her Mom, I’m her aide. And she is the best kid ever! I adore getting to spend time with her. My clients are all wonderful kids and I’m very lucky to have them in my life.” There was a brief pause, as (I suspect) each of us considered our own surprise at the other’s words.

We exchanged another pleasantry or two about how much the kids love the beach, how soothing the water is for them, then said goodbye. But the experience left me feeling shaken. Shaken by how easy it is to overlook something like this, how often our words have impacts we never consider.

So please, pay close attention to your words. Assume your children, your clients, your students are always listening. Assume they understand everything you say. Think about how you, as a child, would feel if someone spoke those words in front of you. Around nonverbal kids in particular, be vigilant. Someone’s self-image may depend on it.