the mama gut

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.

J

the-voice-by-Shel-Silverstein

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.

31 thoughts on “the mama gut

  1. This is so poignant and so necessary for every parent to read. …Jess, you’ve always had a really good “Mama Gut”.

    Love you,
    Mom

  2. As usual, your post is spot on!! We all really need to give ourselves permission to listen to our own inner voice….especially went comes to our children. Education and professional advise is absolutely necessary, but what we determine that works best for our children is up to us. Listen, listen, listen!! It’s just so important!!

  3. This is SO very true, and the reason we have backed off on most therapy this year. I lived in that world of, do everything the experts tell us to do, for a long time, and wondered why, during that time when K was out of the house 5 afternoons a week (after a long day at school). things were BAD. Like, really, really, really, bad. We stopped speech 2 yrs ago, bc our therapist said she couldn’t deal with K’s behavior. Looking back, K’s behavior was TELLING us she was done. It was no longer helpful to trudge to speech every week. At first I was angry at the therapist, but now I am grateful, because we *should* have stopped, anyway. Last year K started hating her social group, and feeling pretty terribly about herself because of everything she was being taught (I mean, really, everything she did was wrong, and she was supposed to learn how to be a totally different person…it took it’s toll), and for once I listened to her (when she would have a meltdown over going), and we stopped. We stopped having the home ABA person come, bc that wasn’t working, either (and by not working, I mean NOT working, and I won’t say publicly what that means, but it was NOT working, anymore). So here we are, an autistic kid, not doing most of what the “experts” say we should be doing, bc I listened to my gut, AND to my kid (which means understanding her behaviors, bc she’s not going to always tell me verbally). We do counseling, she gets to ride horses there and loves it, and I am fine that we are leading a mostly (private) therapy-free life at this point. She gets a lot at school (and being a private special ed school, it’s a lot, but thankfully we found the seemingly ONE placement that actually doesn’t make kids feel crappy about themselves, and is way more accepting…thank you jebus). Are there times I still waffle and thing we should be doing more? Sure. But I think my kid’s behavior says it all (and oh have we seen such a positive change)…we are doing what is 100% right for her. It’s her life, her world, and it’s her voice that matters, now.

    The end 😉

    • LOVE this! We are in the same boat and so happy with it. Letting my daughter’s own self develop instead of trying to mold her into some robotic compliance of normal has been the best thing we have ever done. Every family has a very different journey with autism and I hope they can all read more about embracing and believing in these amazing children, and less about curing or fixing them.

      • Yes, yes, yes! I’m of the view that if the behavior isn’t harming my kid or anybody else, there is no need to address it — you wanna flap? Flap to your heart’s content kiddo!

        And this business of parents saying they love their kid, but hate the autism? Needs to stop. Yesterday. I’m so sad when I hear parents say that — because I’m pretty sure what their beloved child hears is “I don’t love you, I don’t want you, I really really really want a different kid, one that isn’t autistic”. Breaks your heart.

  4. I love the way you gave a balanced analysis of ABA here. We did it for 3 years before we realized what it was doing and we’re no longer fans, but there are aspects of it that are useful teaching tools if used in a way that respects your child. It isn’t a black and white thing, but any criticism is usually heard as an attack. Funded programs, unfortunately, seem to want to go all-out with one aporoach.

  5. In one way I was very lucky, I learned very quickly that not trusting my own instincts, my “Mommy gut” could be disastrous. Since then I have always let my “Mommy Gut” have free reign, and only when I had not overt reaction either way, would let the “Experts” try whatever the suggestion was. But I always made sure that this was a trial only. The only time it ever became an issue was when a new provider told me that I needed to let her do what she was going to do; after all she was the expert. I informed her that there was only one expert on Jimmy, and that was Jimmy himself, everyone else was just a supporting character.

  6. This one got me. Yes….we can not stop listening to our gut feelings. They are always right..even if just at that point in time. This should be in that book of yours. It is an important reminder for all parents…and especially for those of us who need to advocate for our kids when they cannot.

  7. Yes. Yes. Yes! We’ve ‘fired” people from Nik’s team of professionals for wanting to force their “evidence-based” opinions to over-rule our gut instincts. We may not always *know* what the issue is, but we always trust our instincts and we eventually get to the place where answers pop up and Nik benefits. When we fail to trust our instincts, he struggles longer or harder until we wake up!

  8. This post was very timely for me. We have had trouble transitioning to 3rd grade and things have been, well, rough to say the least. My gut told me he wasn’t having an aide in the class all day. Turns out, I was right! IEP states “adult supervision” and I have been told that teachers count. My gut is telling me to fight this and I will! Thanks for this post. Just reinforces what I already know!

  9. Amen, sister.
    Best thing I ever learned how to do with the professinals was to say ‘I don’t know the right answer yet, but I know this is the wrong one’. just said it again this week.
    well said, as always, Jess.

  10. love your perspective on respecting the child, learning to grasp the way THEY communicate and not “how can we force this kid to seem like the rest of us”. your perspective…and the perspective of all the parents out there who love their kids and work hard to trust their guts and find a way to think from their child’s POV….this saves lives, this creates breathing room for difference.

    i’ve mostly avoided this topic because i just get too upset, angry…have nothing to contribute to the discussion other than inarticulate frustration, disgust (towards the parents who kill/try to kill their children, yet posture as victims themselves)…

    let me just say, one of the great tragedies facing the autism community: when you love your child, and spend every waking second trying to think from their POV, trying to understand them, putting 100% effort into making their lives comfortable no matter how difficult: you’re not a news story. “Mom respects autistic child day in, day out”…that story doesn’t go viral. “Dad learns one sensory trigger of their child, makes their life better”…no one reports on this

    Parent kills or tries to kill their autistic child? This is the only time parent/child stories hit big, in the community. This is all the world outside of the community sees. And I have to wonder what message that sends. I don’t think it’s hard to imagine. I think the general public has no idea how much love, support exists in the autism community. I think when the general public hears the word “autism” they associate it with hopelessness, because that’s the only story they hear. They have no idea that parents are blogging, writing, creating all sorts of stories about learning to connect with their child, learning to identify their triggers, support them….learning to make their child’s life better.

    Sometimes? Things don’t improve…yet parents continue to work on the project of making space in this world for their loved one. A profound and graceful effort that will never hit the news cycle.

    If someone were to read this and think, “But I do feel hopeless…my child’s autism has made life hell, every step of the way”…I would just say, don’t worry: your story is being told.

    It’s the only story being told. It’s the only story the public hears.

    I would just ask that you make room for the others stories out there…the ones about progress, change, unconditional love. The stories that may help more people see the full spectrum of autism and not just the one facet (death, despair, hopelessness) that unfortunately gets handed the biggest megaphone.

    • Love, love, love, you and Jess both! You are both dead on! It is a shame that the happy stories never get the recognition they deserve. In my case the successful story of my kiddos on the spectrum was extremely tiring, hard, and I felt hopeless at times. I’m sure those times will return from time to time, I am just determined to not let those moments take over. I tell everyone I encounter how much my kiddos have excelled…in hopes that they can see the progress that can occur. And when the going gets tough..we continue to muster through the day…and once they’re in bed I open wine 😉

  11. Reblogged this on Walkin' on the edge and commented:
    A very powerful post about respect: respecting yourself enough to listen to your gut, especially where your child is concerned; respecting your child enough to understand that behavior is communication, and that they have feelings, opinions, needs that need to be acknowledged and acted upon.

  12. Pingback: Perceptions of Autism in the Media

  13. The Mama Gut. I get this. Now it has a name. Now I can stop feeling guilty that I’m not doing all this extra therapy, realize that what she gets in school every week is enough. Enough for her. I’m doing my job. The right way, for right now, for my sweet girl. Thank you!

  14. “physical guide to correct the individual’s mistake or non-compliance”

    Gonna be honest here – this bit was horrifying to me. The placing of compliance above all else – and the fact that it seemed to mostly be compliance to not look autistic – is seriously harmful to people.

    Do we really want to teach our children that they aren’t allowed to say no? That they must comply with what they are told to do no matter what? That their own boundaries of comfort, pain, or number of spoons simply don’t matter in the face of compliance?

    I spent many years trying really hard to be what I was told to be. Oh sure, there was lip service given to “being myself” but only within extremely narrow constraints of being what people told me to be. Breaking out of that was hard. I can’t even imagine how much worse it would be for a person subjected to actual compliance training.

    (sorry, not really about the main thrust of your post, I know. I just had a really strong emotional response to that bit)

  15. Our son, Q, has been in a hospital environment now for almost 2 years, for very long stays with a couple month at home between visits. No schooling, per say, just doing the things he loves best in the world. Watching all of his dvd’s on his computer and YouTube of all of his favorite shows in the whole world; Dora, Thomas, Franklin, etc. He has learned more “living” here at the hospital then he could ever learn at school. His social world has grown. He is able to have real conversations with STRANGERS without being coached. He is able to go into a scary situation and actually deal with it without having a complete meltdown. It is amazing and I am so proud of our Q man. Sometimes we just have to take a break from the world of “knowledge” and let the kids do the teaching. It has been a wild ride here at Seattle Children’s, and we have asked many times, why are we here? I think one of the answers is so Q could come into his own! And my “mama gut” told me, just let him grow as a young man and he will be amazing. And he is!!!

  16. The beauty of listening to your mama gut is that it gives you permission to be your child’s mother. Which, said to a mother of a typical child, would sound ridiculous, but to parents of children on the spectrum, needs to be emphasized. Too often, once that diagnosis is made, parents get pushed aside in favor of specialists, teachers, and therapists. And they’re important, too, but nothing is more important to a child than his or her relationship with mama. Sometimes, we need encouragement to continue to nurture our children and continue to build that relationship. Thank you for encouraging us, because really, there’s nothing more important and fulfilling than mothering our children.

  17. Oh…DOA how I needed this today! My almost 5 year old ASD son has been recieving ABA therapy for about 2 years now, speech since he was 16 months and OT since he was 2. We just recently (2 weeks ago) stopped all therapy. He still enjoyed OT and speech…but was having a hard time with ABA. It got to the point that as soon as he would see their car pull up he would start to cry and run and hide. I’m not going to knock it…ABA did make a huge difference, it’s like my son had a wall up and they knocked it down and language started flowing, along with better social skills. My husband and I would talk about stopping it…but I was always so afraid. One night I layed in bed and asked the universe to tell me what to do…give me the answers. The next morning my son woke up and the first thing he said was, “no therapy today mommy. Ok?” That was it! That was my answer. He was “my universe” telling me what to do. He saw the girls one last time that week to say goodbye. He’s happy! He has free time to be a boy, a silly boy, an autistic boy. No one telling him to “quiet his hands and body” “look at my eyes”. A couple says ago…he was in his play room and called me in. I walked in and he was staring at the Mona Lisa print we have hanging in there. When we first hung it there he loved it and would always ask me, “Mommy is Mona Lisa happy or sad?” And my response was always the same “she’s happy!” Well he turned to me and said, “mommy guess what?” And I said, “what baby?” And he said, “I am so happy like Mona Lisa, no more therapy!” As he threw his arms up. What can I say? We gave him his happiness, we gave him his “Mona Lisa smile”. Don’t get me wrong…I still think about whether it not we did the right thing. And the only thing I can come up with is we did the right thing for right now. Things change…especially with our kiddos. But the one thing I’ve learned through this journey is he has a voice, he has rights he knows what he likes and doesn’t like. My son deserves respect. And if it doesn’t start here, at home. He won’t know to demand it in the world.

    Hugs and many thanks,
    Jami

    • We made that same decision a year and a half ago…and our daughter has blossomed. There’s still a long way for her to go yet, but the change in her is so clear to see…language, playfulness, imagination, interaction, and contentment. ABA seemed to do a lot for her in the first year especially (self-care and language), but I really wonder if the tradeoff (anxiety, emphasis on compliance, fragmented learning) was worth it.

    • When we faced something similar, my Mama gut told me that we needed to change our ABA and how we were doing it. (And some of our therapists). I sat them down and said, “a 5 year old doesn’t do”work in the therapy room”. We will “play in the den”. Same goals and objectives, still ABA (because we needed it), but different mindset that brought everyone back to the fundamental principle of reinforcement.

  18. I love your post, the respect and understanding that you show is marvellous.

    I do have one small footnote though. The mama gut might sometimes be off because the parent (mother or father! fathers seem to get overlooked a lot) is struggling with their own demons. I saw a pretty awful video the other day (not going to link to it, because it was immensely triggering), where a mother wouldn’t let her autistic daughter “get away” with a lot of behaviour because she herself wasn’t allowed to “get away” with it either. Turns out the mother was physically abused pretty heavily by her father… and used the same methods to discipline her daughter. It took someone else pointing out the similarities for her to realise what she was doing. It was awful. But it was what her gut was telling her. Because that was how she was treated as well. And she was projecting all that anger and pain onto her daughter.

    I’m not saying that you shouldn’t trust your gut. But not every parent has the emotional capacity to only want what’s right for their child.

  19. I’ve been thinking about this post since I read it the other day. I had to google Kelli’s story because I hadn’t heard it. How very sad.

    What keeps sticking in my head is how she describes how the system and the experts choked out her natural mothering instincts. I am an attachment parenting parent, and many of the philosophies of AP go against the grain of most people’s parenting advice (my parents included). I’m referring more specifically to the “oh, just let them cry it out” and spanking. Things that are just sand in the oyster of my parenting. We tried cry it out with our oldest, P (who is our spectrum guy), and the few nights we tried to implement I felt physically ill. It didn’t go beyond two or three nights. And yes, he’s always been a problem sleeper, so it’s more work for us, but he gets what needs to fall asleep from one parent or the other. Period. As for spanking, my sense if the research shows its ineffective in typical kids, how much more will it backfire for sensory seeking autistic kid?

    I also baby wear either in a ring sling or Ergo. My mother thinks this is crazy and I should just put the baby down and clean my kitchen while he wails. But it’s so much easer with him on my back. Again, my instincts are telling me that if he needs to close to me then that is the most important thing.

    I guess my point in all this rambling is that it’s not just in mothering through the gauntlet of autism treatments that we should trust the momma gut, it’s in all our mothering/parenting decisions. We shouldn’t let the flood of parenting experts and advice lead us to doubt that still, small voice within. That’s what makes reading Kelli’s last blog entry, so terribly, horribly heartbreaking.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s