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I think this post in the #IAmNotKellyStapleton flashblog is one that gets beyond anger to make valid points: First Do No Harm

"How am I not Kelli Stapleton? When I wanted to engage Sophie I did the opposite. We include Sophie in everything we do as a family. We avoid separating our kids during family time without a very good reason. We constantly brainstorm which activities would be most suitable to all our family members, who are all of different ages, ability levels and at varying developmental stages. It is difficult sometimes but not impossible. Why do we "bother"? Because we are a family. We all matter.

How am I not Kelli Stapleton? Because when I realized that Sophie's autism was "here to stay" I knew that I had a choice to make. I could mourn, cry and pine for the child I thought I wanted. Or I could embrace the child I was given and learn to be the kind of parent she needed."

A Good Day for the Library Sale

Something about my husband being absent brings out the cleaner/organizer in both me and my son. He's been cleaning out his books, and asked for my help making decisions about the massive collection I had amassed for him.

The experience was fraught with symbolism. So many books that I l had loved, and thought my child might love. And that I have to recognize now he has no interest in, and likely never will.

The floor of my office is now covered with my out-grown dreams.

Yet another reminder that no matter our similarities, he is himself.

The Mythical "Services"

I've written before about how some services can be more harmful than helpful. That's probably no surprise if you've read about shock "treatment" and some of the uglier aspects of ABA. (I should mention that the ABA therapy we experienced was not generally cruel, was helpful in some regards, and was even sometimes enjoyable for my son. The problem was that overall it was an extremely poor fit for his personality, and the practitioners were not flexible enough to adjust. He's currently in a very different form of ABA program with very different goals -- basically it's ABA mainly in the recordkeeping and that the Regional Center will pay for it! --  and loves it.)

But what's on my mind right now is the idea that "services" are the Holy Grail for parents with disabled children.

I'm not discounting the very real frustration of parents or disabled adults who can't get the services they need from the agencies that are supposed to help them. That's wrong, and it sucks, and it needs to change.


But I'm very aware this morning, not for the first time, that services aren't a magic bullet. We get respite services, 24 hours a month. And we rarely use them all because we can't find a provider who can accomodate our needs. 

Yesterday was... bad. My husband has been away on a business trip, and I'm thoroughly sleep-deprived. Of course my son is stressed out too because his father is away. Almost everything you can imagine went wrong and by the end of the evening, I was completely out of spoons.

Thankfully, I talked with my husband and he had some suggestions for what I needed to do, that I was too exhausted to think of for myself. This morning I feel human again. I'm lucky to have had that long distance support. But it would have been even more awesome to have some hands-on support this week. Services that I theoretically have, that are already paid for... and yet I can't get.

Why I Can't Get Behind #IAmNotKelliStapleton

The autistic community has been making an awe-inspiring response to the attempted murder of Issy Stapleton by her mother, Kelli Stapleton.  Let me start off by saying I think this is an amazing and sorely needed response. The idea that parents who kill their disabled children should be pitied rather than censured is by far the dominant narrative in American society, and it's a very dangerous one on many levels.

But... I'm uncomfortable with some of the narrative that's replacing it, especially on the twitter hastag #IAmNotKelliStapleton. What I'm seeing there that bothers me:

1) An emphasis on the mystique of the loving, perfect mother.
2) Disdain for Kelli Stapleton as a woman and a blogger.
3) Disregard for the reality of mental illness.

Let me take these points one by one.

1) Most mothers aren't perfect. Most mothers aren't always loving, patient, and understanding. And yes, thank God, most mothers don't try to kill their children. But having an idealized image of motherhood to live up to is one of the biggest stressors for mothers. When I was a new mom, suffering from bad post-partum depression and feeling like an utter failure all around, I heard about a woman who committed suicide because she couldn't breastfeed. And while completely seeing the illogic of her action, I also understood how she could get to that place. That's how crazy it can be.

I love my child more than anything in this world. But I'm not a perfect parent. I'm not always loving, I'm not always patient, I'm not always accepting. And I have struggled and suffered from my own perceived failings as a parents since his birth. One of the most helpful concepts for me has been that every parent can only do as much as they can do. I can't be SuperAutismMom and that's okay. I'm his mom and we love each other, so I do the best I can. Sometimes it's not good enough. That's where we teach that people aren't perfect, and when we make mistakes we should accept responsibility, make amends, and move on.

This would all probably be equally true if my son were neurotypical. My own neurology is a challenge for me, one that parenting has significantly exasperated. I don't know if Kelli Stapleton had any of what are sometimes called shadow traits, but I wouldn't be surprised. Many of us do.

2) I absolutely agree that Kelli Stapleton disregarded her daughter's privacy with her blogging. This is something I struggle with myself, because I have so few outlets for self-expression around this. One of the reasons I rarely blog here is the constant tightrope walking of, "can I say this without intruding too much on my child's privacy?" Usually the answer is no. Sometimes perhaps the answer should be no and I do it anyway, because I need the outlet so much. Like right now.

Perhaps the privacy issue just never occurred to Stapleton. I talked about my son all over the Internet for years before I wised up. I think she was wrong and misguided, but I don't think her blogging proves evil intent and hatred for her daughter, as some claim. And I see blatant sexism in some of what's been said about her -- tying in with what a good mother does or doesn't do.

3) One thing that I never seem to see mentioned in this story is the fact that Stapleton also attempted to kill herself. That to me is a sign of someone suffering through severe mental issues, rather than someone who is merely selfish or cruel. It does not excuse her, but yes, I do feel some pity for her.  My pity is not as someone who also has an autistic child, but as someone who's suffered from depression and other mental illnesses. It is literally a mind-altered state and it is not easy to "fix."

When I see people write about how no matter how hard their lives were, they never thought of hurting their children, I don't know what to think. Bravo? Congratulations on never having been that fucked up? Can you tell me what secret sauce you use? It isn't a sign of virtue -- it's a sign of sanity.

Let's keep on changing the narrative. There is no excuse for hurting your disabled child.  The victim should not be the one blamed.  We have to keep saying this. But we can say it without perpetuating harmful ideas about women, motherhood, and mental illness.

My Home is Where My Heart Is

I went to an "alternative" middle school, a place for kids who had trouble fitting in in more mainstream schools. It wasn't really all that alternative, but we called the adults by their first names and had fewer boundaries, perhaps. (Or maybe that was just me.) Once we went on an all-school overnight camping trip, and the teachers were talking depressedly about how the worth of their houses had gone down. I was appalled, and told "you're talking about your homes, how can what they're worth be so important?"

Of course they considered me very naive and foolish, and looking back I see that I was rude and uninformed. But the interesting thing about this memory to me is that I really haven't changed. When my husband and I shopped for a house, we irritated our realtor because we didn't want to settle for a "starter" home... we wanted something we could love and stay in. And all our friends said, "Oh, you'll want more space and move within a few years anyway." And they thought us very naive when we said no, that wasn't going to happen.

Well, we bought a house in 2000, and had a child a while afterwards. We're still in it. And barring very bad luck, the vagaries of the housing market matter very little to us.

This memory made me happy. I've felt for years that in trying so hard to fit in with the world, I've lost much of my essential self. I'm glad some of me is still there.

I'm Miserable, And You?

The phrase "How are you?" makes me deeply uncomfortable. Although I've trained myself to answer in a non-committal way -- having, after decades, finally learned that it's not really a question and it's not supposed to have a genuine answer -- I still have trouble reciprocating as I'm "supposed" to. Every time I make myself say, "Fine, and you?" during a business transaction, I die a little inside. My unconsciously developed preferred method is to deflect with something true and generally acceptable: "How are you?" "Okay... isn't it hot today!"

I was reminded of this today when a poster on Twitter, who's recently suffered a terrible loss, talked about it. What a horrendous sting it is to hear that at a time when you're in great pain, from someone who doesn't really care about the answer and whom you probably wouldn't want to discuss your grief with anyway.

How very fucked up it is that autistic people are trained to behave in socially acceptable ways that are so messed up to begin with. "Welcome to the neurotypical world, now start lying!" I do understand the need for some social lies, but it's perfectly possible to be polite, even friendly, towards someone you have a transaction with without needing that false interaction.

This is Brilliant

By lovely synchronicity, I just ran into this video which relates so well to my last two blog posts.

It really confirms my feeling that we were right to cancel ABA, and that losing that huge stresser is probably a big part of why my son is doing so well now.

For Their Own Good

I had another thought today about how "Frozen" relates to autism. In the film, Elsa and Anna's parents are obviously very loving and concerned about them. And yet, their love and concern leads them to psychologically abuse both daughters, with resultant trauma for each.

I don't want to point fingers at other parents. No one knows better than I do how hard it is to have so much at stake -- your children's entire future -- and yet have so very little idea of what's the best thing to do or whose advice to trust. I confess here that we stopped vaccinating for years, and if my son had died or been a carrier that caused someone else's death, it would have been all my fault. I'm very lucky not to bear that burden, but I bore the burden of fearing that my child's vaccinations had caused his autism for some time.

Thankfully, science was able to remove that particular burden from me. But it's left us hanging in a lot of other ways. The only "proven" -- and subsequently, the only covered -- therapy is ABA. My son's ABA therapy was a stress nightmare for the entire family, but it still took a long time for us to pull the plug.

Every decision I make for my son is surrounded by fear and uncertainty. Will this help him or make his life worse? Should I be sacrificing his immediate well being for the sake of his future? What is the line between "for his own good" and abuse?

I May or May Not Be Leaving on a Jet Plane

I'm tentatively planning a trip to London with my mom this year. I say tentatively, because I'm not actually sure I can do it -- leave my husband and child behind for 10 days. A few years ago, my husband and I had a week in New York, while my mom babysat. It was the most thrilling, romantic, fun, enjoyable second honeymoon possible, and yet I still cried pretty much daily over how much I missed my son.

My husband takes fairly regular business trips, which I've gotten used to, but the feeling of him being in China was a whole different animal to the feeling of him being in Vancouver or Philadelphia. I felt the distance. I know I will feel the distance even more when I'm the one on another continent.

People don't get this. I have not been able to find a single person I can talk to about it who understands or even takes my feelings seriously. "Oh, you'll be fine," everyone says.

Back when I was an adolescent, I was mocked by teachers for my attachment to my mom. A counselor I saw as a young adult obviously thought it was fucked up. I see it in my son now and think, yes, we do need to help him move away from us and find people outside his family to care about. But I don't judge or blame him for it. It's who he is.

Today I just feel like saying a big fuck you to everyone. This is who I am and there's fuck all I can do about it, even if I wanted to.

Progress Happens

My son has been making huge leaps lately in social understanding, expressing himself, and managing his behavior. What miraculous intervention is responsible? Well... none. The combination of getting older and getting his needs met (to the best of our ability, though that sometimes seems to fall woefully short) seems to be working pretty well.

It's not that I'm against interventions, though that's a terrible word when you stop to think about it. Let's say, it's not that I'm against supports, therapies, medications etc. But we've found quite a few of them to be counter-productive. (I'm looking at you, ABA.) It's particularly stressful when a therapist uses rigid methods on him that don't take his needs and individual personality into account.

It's easy for me to become a superstitious pigeon about what is or isn't helping my son, so it's important for me to remember that sometimes progress just happens.

P.S. Since writing this, I've become aware that a lot of the improvement is connected to work he's doing with a new speech therapist at his school. I'm not sure if she's a particularly excellent speech therapist or that he's just in the right place now to work with her, or perhaps both.