Saturday, July 7, 2018

Book Fairy

My shift to book fairy began 2 years ago when I read Dr. Barry Prizant's "Uniquely Human". I loved everything about it and how it illustrated the attitudes our family shares about our Autism. I loved it so much, just before Christmas break, I gave it as a Christmas gift to both my son's Gen Ed and Resource teacher. After break, and throughout the rest of the school year they gushed over how much they loved those books and if I found anything else, please share.

So, at the start of this last year, I handed out the same book to his 2nd grade teacher and new resource teacher. Which is when I learned not everyone would appreciate the gift (they never even opened the books). I hold out hope that one day, they will open those books and it will change their world view. (Our Gen Ed teacher graded my son on his disability rather than his capability. Last year was a pretty disappointing year). That second grade year, the resource teacher that wouldn't crack open "Uniquely Human" told ME to read "The Explosive Child". She said she had read it and used it with her son. I got the audio book and listened to it and I was HOOKED.

We immediately started implementing at home, and since she had recommended it, I asked her to use the techniques at school as well. Ends up she didn't grok what she'd read, and continued to pursue a largely Skinner based behavior intervention plan that was failing. At this point, I'd also started reading "Self-Reg" and had come to the conclusion that the whole school system needed to change it's mind and heart when it came to how it perceived a kid having a hard time.

Seeing that I wasn't getting the kind of buy in I was hoping for from the resource teacher's current knowledge, I bought her a copy of "Lost at School". As I walked into the school to hand it to her, last year's resource teacher came running up and gushed "What have you brought now?! You find the best books I still love that book you gave me last year!". I let her take pictures of the books and gave them to this year's resource teacher. As far as I can tell, it joined a pile along with "Uniquely Human" somewhere in her house. (This lead to me sending increasingly desperate shorter materials for her to review including specific podcast episodes, the educators walking tour, some of the written one sheets, etc. The moral here is you can lead a horse to water, but you can't make em drink).

The reaction from last year's resource teacher got me thinking. I realized the two that had the best response were coincidentally given just before a school break. Then I hatched my plan. I created a special part of my household budget for book purchasing and saved and to start, I bought 9 copies of "Lost At School" and "Self-Reg".

Just before Spring Break, I gave a set to my son's after school care, another to his OT, 2 sets to the Special Ed department at his school, a set to the counseling department at school, a set to the school principal (totally given up on the GenEd teacher). I also gave copies to both sets of grandparents (though one prefers to receive kindle versions and wanted "Raising Human Beings" to use it with her less explosive grandkids as well). Copies went out to his BCBA and RBT as well, because I adore them and they adore books :)

A few weeks after Spring Break my son started having a really hard time, I continued to send weekly missives on a more humanistic approach based on Dr. Greene's model, things continued to go down hill as they used behaviorial approaches that ignored the internal motivations such as ignoring him when he exploded (his explosions are panic based, so and ignoring them heightens his reaction). Then the school psychologist called about shifting him to a center based program because the behavior they were seeing was so intense.

I explained my frustration with their continued insistence on using a Skinner based behaviorism approach when it was obvious that a more humanistic approach was the appropriate course of action based on decades of research. We agreed to assess at our IEP transition meeting at the end of the year. Building on what I knew, about people I brought the remaining 3 sets of "Lost At School"/"Self Reg" (I used to bring chocolate, but I'm low carb now and books are better anyway). I had written out a 9 page document on the concepts in the book and how they should apply to my son, along with a version of the BIP based on the Positive BIP in the files. So everyone had a basic idea of what is in the books. They took pictures of the books for summer reading (including a contracted consultant who had been called in for my son's case). (Abridged version of the document I sent them can be found here)

Last I heard, they've been passing the books around over the summer. My son's after school care bought more copies of the book after reading the copy I gave them and purchased "Raising Human Beings" as well. They are planning on switching their discipline strategy based on what they had learned.

I've started gathering more copies of the book for this year, along with "Lost and Found". I'm planning to get them into the hands of the district's special education management team somehow and giving them to my daughter's new daycare. I am considering making up cards with the book titles and authors on them so I can hand them out if I see parents who need a new strategy... Seriously, if the whole world used this lens for every human they interacted with, the world would be a much kinder place.

Thursday, May 17, 2018

Our Current Parenting Strategies & How they apply to school

The central theme in the books and philosophies we have been adopting revolve around 3 simple, but powerful, core tenets:
  1. Ask Why - Ask the affected person why, the answers can surprise you
  2. Be Proactive - Solve problems before they happen, instead of reacting after
  3. Flooded people can’t learn - If a person is already in limbic response (Dr. Shanker's Red Brain) or fight/flight/freeze (Dr. Shanker's Lizard Brain), it is too late to intervene.
Our transition from a Skinner based behavioral style of parenting to a more humanistic style began when I read the book “Uniquely Human” by Dr. Barry Prizant.  After reading the book and finding it incredibly rewarding, I gifted copies to both my son's General Education and Resource teacher that year at Christmas. They stated they also greatly enjoyed the book (fair warning, it’s a bit of a dense read, these all are).  Dr. Prizant is one of the creators of the SCERTS model (Social Communication, Emotional Regulation and Transactional Support).  This philosophy intrigued me, however I wasn’t able to find the depth of supporting resources I believed would be needed.   

This year, several people recommended “The Explosive Child” by Dr. Ross Greene.  First, I listened to the abridged audio version of the book (only 2.5 hours long, for those in a hurry).  Then, I read the more broadly applicable "Raising Human Beings".  Finally, I began exploring the materials on Dr. Greene’s website, where I found a wealth of information and evidence-based practices that resonated strongly with us as a family.  Shortly after I began investigating Dr. Greene's Collaborative & Proactive Solutions, I also started reading "Self-Reg" by Dr. Stuart Shanker.  I am still working my way through that book, but have learned a lot about how stress affects the body and and mind, as well as managing energy flow to optimize self-regulation.  Understanding the Triune brain and determining which brain is driving the behaviors I see is a huge influence on how I handle the behaviors I see. 

The Shanker Method added yet another piece to the puzzle that was leading me further away from Skinner based behaviorism.  All of the above mentioned resources start with the same basic premise. We need to reframe how we understand behavior.    Skinner teaches us that the behavior we see is learned and ultimately manipulative in nature. That all human action is based in a strategic attempt to control the environment and its demands.  A lens shift occurred for us when this behavior was reframed. The actions of an overwhelmed human aren’t manipulative, often times they aren’t even rational. Expecting someone in a flooded state to be rational or in control ignores the biological functions that rule when a person is in this type of dysregulated state.  The blog post about Spoon Theory gives a really relatable framework for understanding how the extra work of illness or disability take a toll on the resources available for self-regulation.  

While researching the above methodologies, I came across this article on the implementation of Dr. Greene’s method within the school setting. Which lead me to the book "Lost at School" and to Dr. Greene’s CPS Walking Tour for educators (there is also a walking tour for parents), both of which have a fantastic introductory video that really explores whether behavioral success is simply a matter of motivation.  The core of Dr. Green’s methodology is based in the idea that the behaviors are actually symptoms of developmental or learning delays or disabilities, in a series of important life skills, rather than manipulative or attention seeking behaviors.  The Assessment of Lagging Skills and Unsolved Problems (ALSUP) is the tool for identifying the lagging skills and for brainstorming the problems to solve. After having used the tool personally, I believe it would be beneficial for every educational team to fill out an ALSUP during the IEP process.  In addition to the Walking Tour for Educators, here are some additional easy to consume resources to get a quick idea of how this all comes together:
Finally, I want to provide links to a couple of resources that I believe really capture the beauty of acceptance within school.  This series of blog posts covers the discussion one amazingly articulate mother has with an incredible class of kids:
And, a beautiful video project that I wish would have been fully funded:

An Alternative to Motivation Based Interventions

The base assumption of behavior based intervention is that kids will do well if they want to. Our experience with our son belies that belief.  Dr. Ross Greene takes a more humanistic approach that is summarized in this quote "Challenging kids are challenging because they’re lacking the skills not to be challenging…they are delayed in the development of crucial cognitive skills, such as flexibility/ adaptability, frustration tolerance, and problem-solving."  This frames the visible behaviors as symptoms of a developmental delay. We can no more expect that motivation alone will solve these issues than we’d expect motivation to lead a dyslexic child to read.

Once we accept that behaviors are a symptom of developmental delay in the aforementioned crucial skills, the lens begins to change.  No more are we questioning why a child doesn’t want to behave appropriately, instead we are looking for the barrier that is preventing something they desperately want to do.  This begs the question, how do we get over that barrier. How do we teach skills like Problem-Solving, Frustration tolerance, adaptability, and flexibility? Modeling is one of our best tools for teaching these skills. The entire Plan B process is a blueprint for how we want our children to interact with the world:
  1. When you are becoming emotionally compromised, practice self care to regain equilibrium
  2. When everyone is in a calm and centered state, ask the person what they are experiencing and really listen, for the purpose of truly understand their perspective, rather than to frame your reply
  3. Express your concerns regarding the situation, while they listen to understand your perspective in return
  4. Collaborate to find a solution that meets everyone’s needs.
If I can model this to the point where it is the default action for my child when they are in conflict with another human, I will consider that a major win for my parenting.  This process provides a framework for kids to learn these crucial skills.

Here is an example Plan B Conversation my son and I had after an incident in a lunchroom.  In this incident, the original assumption was that my son was upset he didn’t have chips, because his routine was to get chips every day at the end of lunch:

I started with “I heard you had trouble leaving the lunch room on Friday, what’s up?”

He replied “I wanted chips and lunch time was over”.  

I replied “You wanted chips and lunch time was over, anything else”?  

He said “She just kept ignoring me”.  

I said “She kept ignoring you, anything more to tell”?  

He said “No, it just really made me mad to be ignored”

I said, “You wanted chips when lunchtime was over, and it made you mad when she ignored you when you told her that”.  

He said “yes”.  

I said “anything else you want to tell me about that?”  

He said “No”.  

I then shifted into the adult concerns portion, I said “my concern here is that an hour long reaction to being ignored isn’t actually going to get you heard, do you think she knew she was ignoring you and the information you had to provide”?  

He said “I don’t know”.  

I asked “What do you think you could try next time you are feeling ignored”.  

He said “I can tell them to stop ignoring me”.  

I said “Let’s try that and see how it works”.  

This was one of our first Plan B conversations (I wrote it up to send to his teacher).  The biggest take-away here for me, is the base assumption upon which my son's teachers acted was fundamentally flawed.  They lectured him on alternate ways to get food from someone without yelling, but the real problem was something different.  If we don't ask the person with the problem "why" there are pretty good odds that we'll be solving the wrong problem.

At home, we support the plan when we see the problem arise. If it doesn’t work, we wait until we are calm, we talk about it some more and we modify the plan.  We’re having trouble finding footing on how to create and implement plans for school, but we are working on it.  This blog post actually originated as a 9 page document I sent to the school in order to help them help my son.  I've (hopefully) removed all the identifying characteristics and personal information.  If anyone sees something, drop me a line.

One of the ways we’re working on improving our abilities to support and help our children at home is by working through the book “How to Talk So Kids Will Listen And Listen So Kids Will Talk”.  We are finding that the exercises built into the book are really helping us cement our skills.  I also listened to and gained a lot of tools for helping my kids when they were young with the related book “How to Talk So Little Kids Will Listen And Listen So Little Kids Will Talk”.  I loved that it included information for those of us who have more challenging kids.  So many book skip over our very vulnerable demographic.

Stephen Covey wrote “Most people do not listen with the intent to understand; they listen with the intent to reply.”  We’re working hard to build a habit of listening to understand. It is a difficult shift to make, after the habits of a lifetime, but I think it is well worth it.

Note: This post is available as a google doc so you can modify/add/include it in packets for use with your own school or family.  Please keep the credit in the footer.

Friday, February 2, 2018

Kid Updates for February 2017

C had a cardiology appointment yesterday.  The night before we had this really nuanced and in depth conversation about his cardiac status and why his heart beat so slow and what that meant, both now and in the future.  It was nothing like what I'd expect to talk about with a 7 year old, and yet, it didn't prepare me for the reality of his concerns.  Especially with C at this time, this kind of back and forth conversation as been rare.  We stayed on topic the entire time and the questions he asked were thoughtful and showed he had an understanding of the situation of which we were previously unaware.

While we were at the appointment, he put up the usual prolonged protest to the echo, the stickers on his chest, etc.  He hates having things stuck to his skin, so some of it was expected.  The doctor agreed to forego the stickers on the echo, despite the decreased picture quality that will result.  But C continued to protest.  After about 25 minutes trying to get him to lay down he yelled "I just don't want to know if I need another open heart surgery".

We did finally get the echo.  The repair is holding.  We're doing a 24 hour Holter right now so we can find out what his heart is doing over the course of a day.  I'm still hoping it will pick up speed or heal, or do something so we can achieve stability.  If not that, I hope they can figure out a way to make those stem cells we saved at birth replace or repair the sinus node that just isn't doing the job. 

 R had the flu last month.  We all went on Tamiflu in the hopes of stopping it in its tracks, which seems to have worked.  This year's flu seems to be particularly troublesome when it comes to secondary infections.  Poor R was on tamiflu, and a steroid, and just finished some antibiotics for the pneumonia that developed in the wake of the flu.   She's also doing well, though it was somewhat disconcerting to have her tell me "The left side of my face is swollen".  She is so aware of what's going on with her body, compared to her brother's disconnect, it is quite startling. 

 Both kiddos are in school, both at the elementary school and an after school program. R goes for half days, then to a Montessori preschool for the other half.  She's enjoying everything about school, C would prefer more academic rigor, everything is too frustrating on the motor front and too boring on the intellectual front.  It's a hard balance because the two aspects are so very lop-sided.  Everyone is doing their best.  We have our next IEP meeting in a few weeks.  I am looking forward to coming up with ideas to help him next year.