physical

*

As many of you know, this was not the easiest of weekends in the Diary household. As a matter of fact, it pretty much sucked. But in the middle of it, this happened. And today, this is where I am training my lens — on a small moment that was anything but small. On a sister who gets angry and frustrated … and still tries to understand. On a moment that, if replicated again and again, will change the world.

~

The epiphany came in the parking lot of McDonald’s. Not really the place one pictures as the backdrop for an epiphany, but hey, they come where they will.

Katie had just coughed and her sister had let out a sharp, pained shriek in response.

This has been going on in some form or another for years.

You have an idea to help? Yes, we’ve tried that. Thank you so much. I very much appreciate the suggestion. Oh, a different one then? Yes, we tried that too. From curing the cough to building Brooke’s tolerance for it and back again, we’ve done it. Sometimes we’re in an okay place with it. Sometimes we’re not. Right now, we’re not.

As hard as it is for Brooke, it weighs on Katie too. Her sister does not want be around her for fear that she will cough. That hurts. She loves her and the sting of what feels to her like rejection is tough to swallow.

Eventually, sadness gives way to frustration. She’s had enough. She doesn’t want to be coughing either, damn it, but she can’t help it. Finally, it turns to anger. “Enough, Brooke! I’m sorry that I coughed but do you really have to yell?”

Yes, I explain.Yes, she does.

It doesn’t sink in.

Until it does.

Until we’re pulling into the parking lot at McDonald’s and Katie says, “It’s physical.”

I turn to her and wait for the rest.

“Brooke’s reaction to my cough, Mama. It’s physical.”

I’ve said this to her before. But hearing it repeated back to me, the words are completely different. They’re hers now. Filtered, processed, absorbed, and now given back. She goes on.

“It’s a PHYSICAL reaction. She can’t help it.”

I wait. I’ve yet to say a word.

“Like this — look.”

She presses a finger into her forearm.

“See how it made a dent. It’s like that. I can’t touch my skin without my skin reacting. It’s just what it has to do. My finger makes an imprint in my skin. Look.”

She pushes her thumb into my arm as I pull into a parking spot and turn off the car. I make no move to get out.

“See? Your arm gives way to my thumb. Your skin can’t NOT move in response to being touched.”

I don’t correct the double negative. I revel in it. I love the raw language of thought-in-process.

“It’s like that,” she says. “Brooke’s response when I cough is a physical reaction. She can’t NOT do it.”

With that, we unbuckle and head into McDonald’s. Brooke is squealing – a happy stimmy squeal. Katie is still talking, but she’s moved on. “So I saw this really funny picture on Instagram,” she begins.

I kiss each of my girls on the top of the head as they pass through the door.

A small moment.

That wasn’t small at all.

 

32 thoughts on “physical

  1. She tries to find reason in all she does. She is such a special little person, sort of like her mama.
    Dad

  2. I love how, even in this, man nature dictates that we must let them find the answers in their own time. Even if we’ve been trying to tell the for what feels like years. I know it won’t make Brooke’s reaction any different, but I sure hope it helps Katie realizeshesnot being rejected. Fingers crossed.

  3. What a wonderful response from her! We spend time though trying to teach Daniel that the feeling he has is very ok, but sometimes the response isn’t and trying to give him a different way of expressing that. Yes, it takes years sometimes. For instance, if she was hitting herself every time Katie coughed you would try to change her response. Maybe screaming is not an appropriate response to a cough. It is ok that it is a physical response to the cough but something else might be appropriate. What? That depends on the kid. If Daniel is upset that’s ok but hitting himself isn’t. Feeling the anger, stomping his feet, Hitting a pillow, all much more appropriate. Just a different direction and one you have probably thought of 🙂

    • Oh, Lord, yes.

      She is learning that the cough is painful to her sister. That she can’t help but have *a* response to it because of that. As for changing the form that the response takes? Dear God, yes. Every trick in the book.

      Sigh.

      • I don’t know where else to ask. No one seems to write about it? What is the best form of discipline for our kiddos?

      • Ruth —

        I find this so difficult to answer, particularly when it’s asked so broadly. There are a number of reasons why it’s problematic, but mostly because the answer is necessarily so varied by individual, just as it is with any kids. But even more so for ours, for myriad reasons, including but certainly not limited to dramatic differences in ability to communicate and understand the relationship between action and consequence.

        I have found that when most people talk about ‘discipline’ they are actually asking about ‘punishment.’ And with our kids, that can mean punishment for behaviors that might be our children’s only available method of communicating distress. I strongly believe that in those situations, it is our job to help them find a better method of understanding, then communicating, then eliminating the cause of their distress, rather than simply addressing the behavior alone. The only way to do that is to work to discover WHY the behavior is happening, or to put it another way, what it is communicating.

        For us, discipline means consistency and structure. It means that we have clearly laid out expectations in our home on both sides of the table – “here’s what you can and can’t do // here’s what will happen otherwise” – there are no surprises. And it means that there are lines that we do not cross. Hitting each other is one of those lines. It is never okay to hit. So what do we do when a line is crossed? We do not allow participation in things that serve as rewards or need to be earned. TV time, for instance. Or computer games. Yet, even with these we are careful not to take away anything that serves as a coping mechanism / accommodation for Brooke. Her downtime is not a reward; it’s a necessity. I am often appalled by stories of teachers taking away recess from our kids as a punishment for restlessness. I believe that the irony is as the obvious as the cruelty in that particular brand of punishment for children who NEED movement breaks throughout their day.

        I know I’m not answering your question, and I’m sorry that I can’t make it easier, but I think it would be extremely dangerous to answer it without knowing your child or what you mean by discipline and for what. To my mind, it’s just one more area that simply can’t be generalized for our little snowflakes.

        Best,

        Jess

      • Here are some more comments from readers on Diary’s FB page:

        Comment:

        I took a 123 magic parenting class it had a lot of effective.things to offer

        Comment:

        Consistency and predictability are the 2 key factors. One of the most common difficulties I find parents in my practice running into is “nothing works!” For all kids, and especially many ASD kids, the structure and routine of knowing what will happen is critical in managing behavior. And of course, being proactive when at all possible (prevent the behavior before it happens) can be the simplest way to avoid being in the discipline situation.

        Comment:

        this one’s really hard — I’m a momma who follows very positive parenting methodologies and have never used any form of “time out” or punitive punishment. couple that with a child on the spectrum that DOES NOT understand causality or temporality (or sequencing) and to say “you’re sitting her {abstract} because you did “x” behavior” isn’t going to work at all — maybe someday (she’s close to seven years old) she’ll get it but its just TOO abstract.
        we talk, we process, we reflect and then we start all over again. I use a lot of “I” statements so I can own MY interactions — and model how TO own these things. Lots of work but it’s exactly where we are as a family and can’t imagine changing it.

      • Trying to answer Ruth about discipline…for my son (age 6), we do much of what Jess is describing. Inappropriate behavior=loss of privileges. The best advice I’ve gotten lately is to assign one thing to the “punishment”. For instance, when my son colored on the couch, he could not play computer for the rest of the day. Then Nana came over and wanted to take the boys for ice cream. My knee-jerk response is to say, He was bad hours earlier, he shouldn’t get ice cream. But the loss of computer was the punishment, and so the rest of the day shouldn’t be impacted by one bad decision.

        We also have an emotion social story-type thing on the iPad, and we go over that when he is upset, frustrated, scared, happy…offer acceptable outlets. Like you can scream and hit your pillows, but if you are feeling like that, then it should be done in your room, away from the other kids so you don’t accidentally hit them, or upset them by the loud volume. This is by no means a perfect system; it has taken months and months of me being calm and consistent to get him to sometimes take himself out of a stressful situation and have tantrums in his room. But I am hugely proud of my son’s ability to identify his emotions, to express what he needs, and we are committed to continually making home a safe place for all 5 of us!

      • Does Brooke have trouble with this at school? If someone coughs in her classroom (which must happen all the time) is it the same reaction? Or is it just Katie. Sorry if you have answered this before and I can’t remember. That must get old. Just thinking about some alternatives we have worked on to help change behaviors.

      • it varies. used to be any and all coughs, including mine (although never luau’s, interestingly.) right now it’s just katie’s. she actually *told* me a couple of weeks ago that she is ‘not scared of [my] cough anymore.’ but katie’s is an automatic trigger. for a while she was saying ‘it’s ok,’, then, without explanation, she began screaming again. then we got her to clasp her hands together and squeeze – that didn’t last. then we got her to take a deep breath — no go. we’ve used charts and self-guided rewards that worked until they didn’t. and when i say they didn’t, believe me – it wasn’t lack of follow through, they DIDN’T. (for a time the charts made her so anxious that they just had to go.)

        for a while she was even coughing *with* katie. that worked, but not for long. for a while recently, she was gasping, which we actually encouraged because it was better than the yell. you know the rest.

        for katie, the cough is mostly allergy related, though she has a tendency to cough whenever she’s under the weather in any form. yes, we feed her local honey. yes, we have tried the wonder drugs. yes, she’s been treated for (and apparently outgrew) a form of pediatric asthma. and yes, we’ve even worked on it behaviorally because, well, yeah, there might just be something to the idea that she’s subconsciously tweaking her sister for control. nope.

        i’m tired.

      • regarding discipline. Sometimes we have taken something prized and cherished (like computer time) or just lessened available time. But generally we use positive reinforcement. When my son was in second grade he was hitting ALL the time. Adults only, paras, and us. We set up a system that every day he would get a star at school if he did not hit. At the end of the week if he got all of them he got to go swimming at the pool during the weekend. He went from hitting all the time to losing one the first week (to test us and no he didn’t swim) and I think only one other time in 7 years. Yes we did it for 7 years. consistently. Consistency is the most important thing.

        We also (by suggestion of a therapist) write in a journal every single day with him before bed. What was happy that day, what he did helpful and what made him upset or angry(this is what we are really focusing on but don’t want it to be negative). The first 6 months every time he would relive what made him angry and have a meltdown all over. The therapist encouraged us to keep up with it. We did and he stopped reliving everything. Then it allowed us to talk about what would have been a better choice to make, or help him understand what made him upset (if he didn’t know, if we knew) or tell him what he could do next time. This has been THE MOST VALUABLE tool ever. And yes it goes with consistency and doing it every day. We have for about 6 years. It allows him to process it when he is not upset.

      • Hi! First, regarding the cough. How does Brooke deal with a recording or a video of her sister’s cough? I ask because sometimes, especially if it is related to the surprise of the cough, she might be able to train herself to have a different, less extreme reaction by being able to control it in a virtual setting (sort of like creating her own feedback to the stimuli by controlling when she hears it/sees it). I’m sure you’ve tried this one, but I just thought I’d throw it out there on the unhelpful repetitious advice train.

        Second, as for the discipline question – and I deal with high school students – my number one advice is that it has to be consistent, it has to be related, and it cannot be that the child needs to get it right 100% of the time. Nothing frustrates me more than a behavior plan that essentially ignores the need for the child to grow into whatever we are hoping to see (stop hitting, stop pacing in class, stop vocally stimming, etc) or a plan that has an unrelated consequence to the problem. Case in point: I had an autistic senior in an elective I taught this year. S/he verbally stims, very musically, but also very loudly. It’s so extensive that from a reminder to control it, s/he can last about 22 seconds (yes, I would time it) before needing to do it again. The solution of one of my coworkers was to give him/her a lunch or after school detention, while another had other students assigned to tap him/her on the shoulder to make him/her stop! (Really terrible in both cases, but I will say most of my coworkers lack ANY training for this – so they tend to fumble a lot in their efforts to be effective.) My point is that neither of these are helpful, a relevant consequence, nor are they really related to addressing the cause of the behavior.

        I’m not sure that answered the discipline question, and I’m not sure the age of the child in question, but at my level, I strive for consistent, positive reinforcement, with the awareness that getting the behavior right 100% of the time is an unfair standard of achievement for ANY high school student, including my autistic ones. Note: I’m a Social Studies teacher here, regular with a cotaught setting, so take my comments with that perspective in mind.

    • Jess, the answer is exactly what I was looking for. I like the definition of discipline to be more in the “training/leading” rather than the “punishment” side. I like it. It doesn’t mean I always follow it. I was raised with daily spankings (well deserved and not abusive). However, when I had my daughter I knew deep down there must be a better way. I just seem to be in discipline limbo;(
      Thank you

  4. I visited my friend whose sweet boy occasionally screams or shrieks when he’s playing. I have issues with noise – my whole body contracts in response to the pain. It takes a few seconds to recover. I’ve learned not to blame the source of the noice and just move on. I wish I didn’t react that way because I really do love that boy, and I don’t want him to stop being himself just for me. My family has put up with a lot of complaints from me in the past, but I’m trying hard to cope with it better now. And they are trying to help but kids are kids. They make noise involuntarily. Meeting in the middle is a grace that love provides. It doesn’t solve it, but it keeps those destructive feelings of irritation and guilt at bay. Those do the real damage.

    • “in the middle is a grace that love provides. It doesn’t solve it, but it keeps those destructive feelings of irritation and guilt at bay. Those do the real damage.”
      Ahhh. So true. I needed to read that today. Thank you.

  5. This reminds me of the snorting stim that Jack went through a couple of summers ago and the very PHYSICAL reaction I had to it. It was terrible. I was an adult with 30+ years of coming up with “appropriate” responses to sensory stimuli that pained me, but even then I couldn’t always. It’s such a hard balance when there are two people involved. Katie is wonderful for working so hard to understand.

  6. SO, to answer the discipline question…I have to say, for us, we discipline our kids the same we would any other kid. I don’t discipline them for stimming that might be bothersome to others, but for the most part, I don’t make a ton of concessions. They know what is expected, autism or not. If they don’t abide by the rules, they don’t earn something, like ipad time. We have a zero tolerance for being physical. If that happens, they are automatically sent upstairs to their room We do natural consequences…like my son threw his towel in the pool, on purpose. Well, now you have a wet towel and I’m not going to race upstairs to get you a new one, ASAP. You’ll have to wait til I am done doing whatever I am doing, and remember next time maybe you don’t want a wet towel, and not to throw it into a pool. If you want to scream about it, fine. It won’t make me move any faster. You’re going to squeeze that juce box for fun? Well, guess we won’t be having more juice boxes. You’re going to make a giant mess with powder in the bathroom (yes, this happened), you will help clean it up. I don’t let my kids get away with stuff just bc they are on the spectrum. Like, at all. I’m probably a lot “meaner” than most, but in the early years it never occurred to me to treat them any differently, so I didn’t, and I still don’t. I am very understanding over overstimulation, and behaviors they cannot control in the moment, but a lot of stuff really is within their control, I think we can just tend to look and automatically blame it on the autism, which isn’t always the case. I mean, we all know our kids best, but I am an anti-coddler just in general, so that probably is why I discipline as I do. Just for any kid in general…that’s just not the type of person I am. And this goes beyond discipline…there’s crap they just don’t get away with, period, bc of their diagnosis. I set high expectations, and they rise to them…they really do. And are proud when they do 😉 I also treat them their ages. My daughter is 9 1/2, my son will be 7 in 2 months…they aren’t babies, I don’t treat them like babies bc they are on the spectrum (that doesn’t mean I don’t allow them to watch younger shows or anything like that, it just means I don’t talk to them/treat them like 2yo’s, kwim?) I think that goes a long way, too, bc kids are going to behave however you let them behave. If you have zero expectations bc they have autism, they they will behave like that. And having zero expecations means no discipline and, well, that’s never good. We are consistent and firm and understanding of when it IS autism…and we make mistakes and we just correct as we go. But, don’t be afraid to discipline just bc of the autism…I guess that’s my main point 😉

  7. The resident behaviorist here…weighing in on discipline. As an ABA therapist and consultant I can tell you that we often train people to understand that consequences and discipline rarely have the desired affects on our kiddos. They usually serve to do nothing more than create another behavior. Positive reinforcement is truly the way to go. It takes longer, it’s hard to do, and in general sucks sometimes because you want to be mad and discipline seems to be the way to go. But it will only have a short term affect. And in the moment that may be exactly what you need. Just know it won’t change the behavior.

    That all being said… I don’t have kids. I don’t pretend to know what any of this is like 24/7. I don’t even pretend to remember what it’s like 6 hours a day now that I am out of the classroom. Sometimes you will just need to use time out, taking something away or raising your voice. For your own sanity.

    But I promise that, while it can be maddeningly frustrating at times, use of positive reinforcement will be the most beneficial way to change a behavior. Please let me know if I can help or point you in the right direction.

  8. Consistency and predictability are the 2 key factors. One of the most common difficulties I find parents in my practice running into is “nothing works!”, which leads to inconsistency. For all kids, and especially many ASD kids, the structure and routine of knowing what will happen is critical in managing behavior. And of course, being proactive when at all possible (prevent the behavior before it happens) can be the simplest way to avoid being in the discipline situation.

  9. What an awesome breakthough for Katie, and it will just get better as she gets older and gains maturity. My daughter is now 20 and adores her autistic little brother, and has actually become a wonderful advocate for him. He shaped her career choice as she is studying to become an occupational therapist and wants to work with autistic children like him. It is hard sometimes because I know my older two children missed out on some family stuff that we couldn’t do once our youngest son was born, but being his sibling has certainly made them more open and accepting and all around richer and kinder human beings.

  10. We’ve tried a million different strategies. What is working AWESOMELY for us right now is modelled on the Collaborative Problem Solving by Ross Greene (author of Lost at school). Together we picked the three issues that were a huge problem in our family, and the kids helped to come up with positive and negative consequences (and they were far harder on themselves than their dad and I were). The first few weeks were brutal, but they are now on a roll…and once the three things were figured out, and the kids realized that consistency was total…..they are the kids we thought we lost to behaviour long ago….

  11. On the discipline front… I’m curious as to if there are any other parents out there who don’t use punishments – both ASD and NT (I have one of each). I set limits on my children and enforce them without the use of an external punishment (like any kind of exclusion or isolation, removal of privilages, removal of toys etc). If its relevent and approriate to the problem it will be removed (for eg. if they repeatedly play with something inapproriately and it’s dangerous or might break then it is removed but I would never remove something unrelated to the problem). I’m not permissive, they are expected to behave in a certain way (within what I consider age/development appropriateness for each child) but I don’t believe children NEED punishment in order to be disciplined and to learn how to behave. It’s an approach sometimes called unconditional parenting.

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  13. This is awesome! Right now I’m having such a hard time with Bug and his siblings and their reactions or stims. He gets so angry and so frustrated. It doesn’t help that he too has ASD but he does not understand how that is possible because he is so different from his brothers. The worst is when the physical aggression starts because he can’t handle his brothers and their stims/reactions. But Katie’s understanding and even way of explaining it is just perfect. She gets it. I know my kids will too 😉 Great kids there mama.

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  15. So far behind on my reading, just saw this post. This is just huge. We struggle with this all the time. The actions of my daughter and how they affect her brother. His responses, which he just can’t help. Sometimes she understands, but not always. And it spirals. She reacts to his reaction… You know how that goes. Oh for those wonderful moments when an epiphany happens. Katie is a terrific older sister, who has a lot of wisdom for her 12 years. I hope my daughter will reach some of those same moments of understanding. ❤

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