Friday, May 24, 2019

Parenting Kids With Disabilities: How to Get Through Tough Times

Shannon Des Roches Rosa
www.squidalicious.com

Content note: This article discusses abuse and murder.

Photo © Steve Silberman. [image: a white woman, standing behind a white teen boy
with brown curly short hair. He is looking at the camera.
Her arms are over his shoulder, his arms are up
and tickling under her chin.]
When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children's fault. We need to handle their privacy with delicacy. And we shouldn't accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.

But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn't. We, our kids, and our families need different supports than families whose kids don't have disabilities, and we often need a lot of them. Sometimes we're not always sure where to find those supports, or even aware of available supports; sometimes we're ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.

So, let's talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever.

People with intensive support needs deserve sufficient resources, and so do their families. When these services are minimal or unavailable, that is a large-scale failure on our society's part. However, insufficient resources don't explain or justify murder of disabled children, because such crimes—which are also, frighteningly, not rare—do not actually have lack of services in common. So please don't buy into or spread the dangerous message that if parents don't get enough services, they might kill their autistic or disabled child.

Instead, parents—like me, like you—need to hear that it's not a failure or shameful to ask for help, and we need to feel safe about doing so. For our own sake, of course, and because reaching out also protects our kids.

Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. So we need to work past fear and misinformation, and get educated about what our support options are, both during emergencies, and in general. Misinformation can lead to tragedies, as when parents absorb media-propelled myths that it more understandable for a mother to try to kill her child than to call Child Protective Services (CPS) on herself if she's thinking about harming that child. These dangerous myths sometimes persist because parents don't actually understand the role of CPS in protecting both children and families, nor are they aware of emergency services or rights-based services that were always available to them, if they'd known or been told where to look.

I spoke to Dori Tanaka, Family Resource Specialist Coordinator at Support for Families in San Francisco, who says:
"While contacting CPS is perceived by many families as a negative, it can help families access emergency services. Once CPS is involved, they may be able to assist families with support to get through a crisis. If possible, CPS's goal is the reunification of the family. 
"Unfortunately, it would be better if families did not have to resort to using CPS services; it would be better if services that would help them in caring for their children were easier to access. [But] many parents are often unaware of resources like Support for Families (and its local sister agencies) that help San Francisco families of kids with disabilities navigate IEPs, home health care, childcare access, and insurance scenarios -- services that can help prevent getting to that crisis point in the first place."
But avoiding parenting crises isn't just about services. We also need to be thoughtful and compassionate in how we approach our parenting, because our kids do not exist in a vacuum. They have a relationship with us, they react to us, and if our behavior and parenting choices do not respect our kids' needs and choices, then we parents can actually be the main problem in our kids' lives.
Especially when, as with autistic kids like my son, so many treatments and approaches and interventions are based on "normalizing." If we prioritize compliance and obedience, if we do not allow that autistic people have autistic brains and autistic learning styles, and are ill-served by forcing them to learn in non-autistic ways, that can lead to trouble.

How else can you work on improving your outlook and attitude as a parent? By finding a supportive community. Community matters, when it comes to feeling supported as a parent. It matters a lot. Both online community, and IRL.

You need to be selective, though. You need to connect and talk with people and parents who are good listeners, and avoid those who aren't. Once, when I was feeling particularly overwhelmed, I managed to squeak in a night out with a friend. On the ride home, I confided in her about some of my parenting worries. She responded by telling me about a friend whose children died from degenerative diseases, implying that by comparison I didn't have anything to worry about. I certainly never confided in her again.

Because when when any of us are floundering, depressed, or in crisis, it doesn't matter if other people have things harder. They are not living our lives. We are. So find someone who gets you, who wants to be around you, and/or who wants to listen (and to whom you will return the courtesy, yes?). Then cut the scoffers or other unfriendlies out. Your time and energy are precious, so don't waste them on people who treat you and your heart thoughtlessly.

Unsurprisingly, many of my friends are parents of kids with disabilities, and/or autistic and/or disabled themselves. When we talk, we talk—and talk and talk and talk. We discuss things we would never, ever say in public, out of respect for our kids and also for the reasons listed in this essay's first paragraph.  We coach and advise each other. And we talk about silly things that are totally unrelated to our kids, because all parenting all the time gets old really quickly. It's all cathartic, it's all fair, and it's all necessary. So try to find your people. Either IRL or online is fine, and anyone who tries to tell you that online community isn't real is living in 1994.

A last, much-appreciated resource for me (as I've written many times) is the writings and insights of autistic adults. Parents and professionals are capable of beautiful observations and crucial recommendations, but there is no substitute for having lived an autistic life. Consider also my personal experience: professionals were the ones who lobbied for my son to have early intervention because otherwise he might "never develop" life skills—and left me a panicked, jibbering wreck; autistic people are the ones who soothed my soul by reassuring me that my son's developmental trajectory was his own, and that, like them, he's probably going to be a life-long-learner and developer.

And of course, my son is also good at teaching me what he needs, as long as I'm paying attention. Our relationship is one of affection and synergy rather than one-sided deficit-battling. He is not my precious special angel meant to teach me life lessons, but rather an embodiment of self-advocacy and grace despite the crap that life, silly people, and even well-meaning people constantly throw at him due to his disability. I hope I will always have his back in the way he deserves, and in the way he has mine. Even when things are tough for either of us.

A final reminder about healthy attitudes towards parenting kids with disabilities, from autistic autism parent Ally Grace. I think we all could all use such a reminder. Possibly daily. Possibly hourly.
"My children owe me nothing. I brought them into the world, which was my choice and is my responsibility now. I will unconditionally embrace who they are. Because that's my job. And because that is my ethical obligation to my children, who are fellow and equal human beings. Whatever their neurological makeup."
Please know that I am not saying every parenting crisis of ours is fixable, because that also would be unfair and untrue. But there are tools, there are people, there is information that may prevent crises from happening, and can also help us find our way to the other side when crises do happen. We parents of kids with disabilities both deserve and need to know more, and feel better, about our options.

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Resources

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A version of this essay was formerly published at BlogHer.com

Saturday, May 18, 2019

Autism Is Not "Behavioral"

Cal Montgomery

buoy
Photo © Teresa Alexander-Arab | Flickr / Creative Commons
[Image: A green buoy on the surface of a body of water on a sunny day.]
Autism is not behavioral. Atypical behavior is not autism. It is a consequence of autism. It is surface markers by which what is underneath may be suspected, diagnosed, and investigated. Altering behavior doesn't alter autism.

Everything we recognize has surface markers. Fear, for instance, may look like a cold sweat, breathing hard, and dilated pupils, but that is not what fear is.

ABA, the most popular monopoly for interacting with autistics, denies the "underneath." It says that the surface markers are all that matter. It is profoundly dehumanizing. It is also a worldview that is almost impossible to maintain.

When you call autism a behavioral disorder—and I am not touching the "disorder" part right here but I also do not accept it—you are focusing only on the part of the person that you can see, as filtered through your own neurocultural understanding. You are denying that there is something deeper.

Would that be how you would want people to relate to you?

When you say that autistic behavior has only four functions, you are denying that autistic people are moved, that we yearn and are repulsed, that we struggle to do the right thing against self-interest, that we tremble in terror and that we aspire. That we are human. Imagine any of the great poets rewritten to replace deep emotion and the human condition with attention and tangibles.

Would you accept that for yourself?

"They don't feel it like we do" is a dismissal of autistic humanity.

The fundamental core of allistic*/autistic relationships, at least where I am, is a refusal to take autistic humanity seriously, to accept that we are people with real perspectives and real understandings—no matter what our disabilities—that deserve to be taken seriously and treated with respect. These perspectives may not be readily accessible to others, but yet they exist. Instead, facile and frequently self-contradictory assumptions are drawn based on an assumption that the core of humanity is limited or absent, and autistic perspectives are regarded as innately deficient, if they exist at all.

The belief that rich personhood is incompatible with substantial disability, especially intellectual disability, drives this divide, so that personhood can only be acknowledged in those considered fundamentally nondisabled; and acknowledged disability is treated as inherently dehumanizing. It is not. Profound disability and profound personhood coexist everywhere.

Onto the dehumanized figure we project all kinds of horrors, and we become something to be controlled rather than someone to empower. And we return to ABA, a technology of control, of altering the surface behaviors while ignoring what lies beneath.

A child does not become more human because they become more familiar to those who deny their humanity. Aping the majority culture does not take away minority status. It merely makes them more palatable to those with power over their lives.

Is palatability the goal you would choose for yourself?

This is what you are doing when you say autism is behavioral. You are participating in a movement to deny autistic personhood.

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*"Allistic" means "not autistic."