Thursday, October 16, 2014

the mama gut

the mama gut -Written by Jess Wilson

Editor’s note:

While I use the term “Mama gut” throughout this post, I think it can be much more broadly applied than its specificity implies. We all have that little voice that tells us when something doesn’t feel right. Dads, teachers, grandmas, doctors, therapists, children — we all have it.

And if it weren’t for those who listened to and acted upon their own internal voices throughout history, we’d still be warehousing human beings at the first sign of difference and using aversive therapies as a matter of course.

No matter who you are or what role you may currently occupy, your gut matters.

Thank you for reading.

I was trying to remember this morning whether it was in preschool or early elementary that Brooke’s OT first came to us, asking us to sign off on using a weighted vest for her during the day.

It doesn’t really matter, I guess, but not remembering things like that makes me squidgy. (What? It’s a word.)  Anyway, we said no. And even though that was likely a mistake because, knowing what we know now, I can see how it likely would have benefited her, I’m good with the decision that we made.

You see, back then, we didn’t know how soothing weight, when used properly, could be for Brooke. And her ability to communicate how she felt in any given moment was mostly limited to “this isn’t working” or “this is,” as evidenced by her screaming or, well, not.

So when the OT suggested putting a 5 pound vest on my then 30-something pound, low muscle tone child, I recoiled. My first thought was how I would feel walking around my job (which was exactly what school was for her at the time) wearing a proportionally heavy vest (call it 17 pounds for a 130 pound woman). It just didn’t feel right to me. To put it another way, it raised a flag in my mama gut. Because I wouldn’t just be wearing a 17 pound vest, I’d be wearing a 17 pound vest without the ability to take it off or the wherewithal to tell someone if I really wanted or needed to get it the hell off of me. So we said no. Just for bonus points, I think we might have even used the word “draconian” when we did.

The OT then suggested a weighted lap pad. That we could live with. It felt much more manageable. Less confining. More comforting. Easier to escape if need be. We introduced it and Brooke seemed to like it. So it stayed.

Years (and a weighted blanket on her bed) later, I look back and wonder if the vest might have been a good thing for her after all. If perhaps it might have helped her receive some of the sensory input that she so desperately needed, or given her a sense of grounding in a world where her body felt so lost. But you know what? Even if it was faulty that one time, it’s a decision-making process that I would use a thousand times over.

Because it’s too easy. it’s too easy to convince ourselves that our gut is wrong. That the so-called experts know better. That our instinct to protect our kids from something that doesn’t feel right to us is less valid than what someone else tells us we should be doing for them – or to them. It’s too easy to find ourselves signing off on so-called therapies to which we would never submit our child were we to really stop and think about their implications.

I read three posts on Kelli Stapleton’s blog. Just three. For those who don’t know, Kelli is currently in jail for the attempted murder of her autistic daughter, Issy. Of the myriad things with which I was left swirling after reading the posts, there has been one sentence that has haunted me above all others. It’s the first sentence after “Some personal thoughts on my training,” and this is what it said.

What my instincts are, as a mother, to do with Issy are almost always wrong.

Kelli stopped listening to her Mama gut.

And I can’t stop thinking about what that means.

You see, I asked the other day where our red line is as a community. Where we jump in to keep each other, and more importantly, each other’s children, safe. But each of us has to determine our own red lines too. Especially with children for whom words are inaccessible or unreliable, but for all of our kids. WE have to draw our own lines. And we can’t do that if we stop listening (first to our children!) but also to the voice in our heads that sometimes says, “This doesn’t feel right.”

Expert opinions matter. Research matters. Talking to those with experience (both in teaching our children and BEING our children) matters. In 2009, I wrote the following:
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You may, –hell, you will — need help on this journey, but you know your child.

ABA has long been one of the tools in Brooke’s toolbox. We have found that its method of breaking the world into digestible pieces is well-suited to Brooke’s learning style. But we are extremely (and have become increasingly) careful in the way in which we, and anyone who works with her, applies it, because we know that it can, when taken to the extremes, be anything but helpful.

ABA’s name implies its true purpose for us – Applied Behavior Analysis. You’ve heard me say a thousand times over that behavior is communication, right? Well, when it’s the only form of communication that your kiddo’s got, you might need some help in figuring out what s/he is trying to tell you. It’s not always so easy. So we collect data (either formally or not) in order to analyze her behavior so that we can figure out what she is trying to tell us.

We used, and still use, the ABC method -

Look at the Antecedent to the behavior – what was happening right before the behavior that might have caused or contributed to it?

Look at the Behavior itself – this is especially relevant in stimming as it might well be its own reward (and, unless it’s patently harmful, should be left alone)

Look at the Consequence – what happens directly following the behavior that my child might be seeking?

It has been immensely helpful for us in determining what Brooke needs and how we can help her to mitigate the challenges that her environment presents. It also allows us to see when it is OUR behavior that is triggering or exacerbating hers.

But ABA can also be harmful. When it is used for the purposes of behavior modification without regard for its purposes as a means of communication. When it is used indiscriminately. When it is used to change behavior in order to make it more palatable to us rather than more effective for our children. And, in the worst cases, when it veers into aversives.

The author of the blog with the best name ever, Love Explosions, pointed out the following, from an interview that Kelli did with the Special Needs Radio Coffee Klatch in December:
It was always directed toward me. Her um anger and aggression. Always toward me. I wondered if that was a consequence of doing a Lovaas replication program. Because I’ve been in her face since before she was two years old. It was always touch your nose. Touch the apple. Do this. Do that. And you know, um, maybe this is sort of a natural consequence to that. I’m not really sure. But I’m sure at this point it is some sort of shaped behavior. Because sometimes even making eye contact with her will trigger a response.
Here’s how Wikipedia describes the Lovaas method.
The Lovaas approach is a highly structured comprehensive program that relies heavily on discrete trial training (DTT) methods. Within Lovaas therapy, DTT is used to reduce stereotypical autistic behaviours through extinction and the provision of socially acceptable alternatives to self-stimulatory behaviors
The Lovaas method is ideally performed five to seven days a week with each session lasting from five to seven hours, totaling an average of 35–40 hours per week.
Should the child fail to respond to a prompt, a “prompter,” seated behind the child, uses either a partial-, a simple nudge or touch on the hand or arm or a full-, hand over hand assistance until the prompt has been completed, physical guide to correct the individual’s mistake or non-compliance.
While the therapy has always relied principally on positive reinforcement of preferred behavior, Lovaas’s original technique also included more extensive use of aversives such as striking, shouting, or using electrical shocks.
Ed note: The article goes on to say that aversives have been largely, but not entirely, abandoned.
Like anything else, there are parts of Lovaas that might work for well for a given child. There are PARTS of it that can, undoubtedly, be adapted as part of a program that might be appropriate and effective. But — BUT — taken as it is?

Let’s think about this, shall we? From the time that a child is very small, in Issy’s case two, he or she is subjected to five to seven HOUR “training” sessions, five to seven days a week. These training sessions are designed to extinguish the behaviors that make him or her appear autistic, which s/he in fact IS, and when she doesn’t comply, we simply grab her hands and MAKE HER DO IT.
Again, there are PARTS of this that might work. There are even times and situations in which hand over hand instruction (with the child’s explicit permission) can be helpful. I’m not tossing the baby with the bath water, so to speak, but, Jesus, guys, let’s look at what we’re brewing in this tub.

According to Kelli’s own words, she knew. She knew it didn’t feel right. She said, in the very last blog post that she wrote before she tried to kill her daughter, What my instincts are, as a mother, to do with Issy are almost always wrong.

I want to go back in time. I want to tell her that her instincts weren’t wrong. I want to tell her that what was wrong was buying into the belief system that autism was, as she said in another post, “a bad, sad, terrible thing.” I want to tell her that what was really, really wrong was allowing herself to shut down her mama gut, to stop listening to the internal voice that told her when something didn’t feel right.

She was told that her instincts as a mother were wrong. And she believed it.
Our most basic instinct as parents is to protect our children from harm. That’s what our gut is telling us when something doesn’t feel right. Please, for the love of God, don’t ever let anyone convince you to stop listening to it.

Trust your gut.

Give it a seat at the table.

Let every teacher and doctor and therapist and expert not-otherwise-specified know that it’s going to be part of every single conversation that you have with and about your child.

And no matter what, don’t ever, ever, let anyone or anything shut it down.
With love to Issy and her family, who remain in my prayers every day.


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