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 before we get into what kind of supports we need and how to get them, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever. As I wrote in my previous BlogHer post:
Children who require high support 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 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 also because reaching out protects our kids as well as ourselves.
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.
Dori Tanaka, Family Resource Specialist Coordinator at Support for Families in San Francisco, 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."
We also need to give permission for parents whose children need truly intense care to admit their kids may actually be happier and safer with an out-of-home placement. I do not write this lightly, nor am I addressing families who aren't in or approaching crisis. But this kind of arrangement is—again—something parents often fear because they don't understand what such a placement means. Such placements do not have to mean relinquishing parental rights, nor do they have to mean you won't get to see your child; in many cases, kids can come home on weekends. And it does not mean you have failed. It should mean that you chose to put your child's needs first.
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. But It doesn't have to be that way. As pediatric neuropsychologist Dr. Jonine Biesman recommends:
"...instead of compliance, why don’t we think about how we can work cooperatively, together, and absolutely listen to not only your child’s cues, and what your child is saying. It's really important, because sometimes your child is not only giving very strong messages, but is trying very hard to tell their parents what’s going to work for them and what’s not going to work for them—and ignoring those cues can have some very dire consequences."
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 out 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 it doesn't matter if other people have it 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 (though not all) of my friends are parents of kids with disabilities. Many of their kids are autistic, as are many parents themselves. When we talk, we talk—and talk and talk and talk. We talk about things that we would never, ever say in public, out of respect for our kids and for the reasons listed in the first paragraph above. (So. Ahem. Please know that I will be disappointed if you vent about your child in the comments.) We talk about silly things that are totally unrelated to our kids, because few sorts are more stifling than parent friends who only like to talk about parenting. And we coach and advise each other about our parenting. 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. 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'd probably be a life-long-learner and developer.
And of course, my son himself is quite the teacher—and quite a source of support for me, due to understanding and accepting him as an autistic person, and recognizing our relationship as one of synergy rather than 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 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. When times are tough, 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 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 parents of kids with disabilities both deserve and need to know more, and feel better, about their options.
Photo (c) Steve Silberman. Photo description: A woman with beige skin and red bobbed hair, standing behind and looking down on the head of a teen boy with beige skin and brown curly short hair. He is looking at the camera. Her arms are over his shoulder and down his chest, his arms are up and tickling under her chin.]