28-Behind the scenes from....
Bill and Wendi's experiences and in their own words:
Our Time with Brianne
The Phone Call
We’ll never forget the phone call when we learned about Brianne’s tumor and rapidly approaching brain surgery. It all happened so fast. All we could each think to tell her, and she us, was that we loved each other and that everything would be ok. She was so brave. We all cried.
About six weeks later, after many touchpoints with Dale and Michelle, we knew things were feeling scary and hopeless. And we knew both of them were beyond exhausted. Brianne survived the horrible surgery, but she was not yet displaying much that gave them hope. Her eyes were open but there was very little other progress. We were also extremely concerned to hear that the man who was Brianne’s husband at the time, seemed to be giving up. His parents and family supported this view. This was unbelievable to us, and to so many. Six years had not passed since her surgery. Only a mere six weeks and he wanted to give up. She would not have given up on him – or anyone.
We could feel that we might be losing our smart and radiant Brianne – the young woman who had been there for our family and had been our youngest daughter’s amazing nanny and homeschool teacher.
We weren’t sure what we could do, but we knew we had to try to help. My husband, Bill, has a PhD in psychology. More important, he used to work with people who were mentally challenged for a variety of reasons – people who were often viewed as hopeless. He had an amazing track record for helping them make progress and become functional in their lives. As for me, I’m just determined. I felt strongly that we could help somehow. And, we knew Brianne’s parents and grandmother needed some relief. They had been by Brianne’s side literally night and day from the beginning. Bill agreed that we had to try to get Brianne back. We had to try. She would do the same for us.
Our First Evening with Brianne
We flew to Salt Lake on a Sunday evening and went directly to the hospital when we arrived. We got the best possible gift when we walked into Brianne’s hospital room. Tears ran down her face when she saw us. We could tell she knew who we were. She couldn’t speak, but this little moment was a really big moment. It gave us hope that so much more was possible.
On Monday evening, we spent time with Brianne’s husband, *Lennerd, and two-year old *Alex, their son. At this point in time, *Lennerd felt strongly that *Alex should not see his Mom. *Lennerd believed it would be too upsetting for him. *Lennerd was especially focused on the fact that Brianne could not speak or communicate in any apparent way. Bill worked hard to understand his views and they had a good discussion.
Meanwhile, I spent the majority of Monday evening with *Alex, playing with him on the floor. I wanted to get a sense of him cognitively and emotionally. I wanted to see what he was capable of. Through a series of games and conversations it became clear that he was really advanced and aware. Not fragile. I could also sense and hear how much he missed his mom. As a mom myself, I know how powerful the mother-child connection can be. I believed *Alex could be part of Brianne’s healing process – her reason to push through this nightmare. After that evening, Bill and I became more convinced then ever that *Alex should see Brianne soon – for his sake and for hers. The challenge was to help *Lennerd see that it was the right thing to do. This would require Brianne showing visible progress – proof that she had some awareness of what was going on and some ability to communicate. Of course, this became an explicit goal of ours for the week.
Bill’s Brain Training Curriculum
Bill had created what he called Brianne’s Curriculum. Bill’s experience and current research led him to believe there were a handful of right next things to do in order to help Brianne’s brain begin to heal from its incredible trauma. Early in the week, Bill jotted down some thoughts to guide the near-term training curriculum for Brianne:
Damaged brains create new neural pathways to route around damage, much like the internet routes around damage. That’s because the brain adapts to demands placed on it. And that’s the magical principle called neuroplasticity. But neuroplasticity works two ways. Place no demands, and it will adapt to that, which is why solitary confinement appears to cause brain damage. Actually, the brain is just adapting, not merely shrinking as some people say. Herein resides the urgency and the opportunity right now with Brianne.
Baseline Communication Capabilities as a Priority. The aim of this stage is to determine Brianne’s baseline capabilities for both receptive and expressive communication. Once we know current capabilities, we can build a program exactly tailored for her that will extend both communication capabilities, neither presuming too much nor too little.
Not only that; when we design and conduct that program, we will work iteratively, letting data drive our design. Brianne’s reactions — or lack of them — will keep making us smarter about what does and doesn’t work, and about how big the steps should be as we proceed.
Later, we will work on general cognitive development. But opening communication channels first will make any other brain development easier and less frustrating for all concerned, especially Brianne! (And, of course, her ability to demonstrate communication capabilities would create the possibility that she could see *Alex.)
Receptive Communication Baseline-
The object here is to discover what Brianne can understand: her current input channels + degree of complexity. In essence, we are exploring (not yet teaching) two dimensions: (1) maximum breadth of inputs understood, and (2) maximum complexity of messages understood.
For example, a low-level input of a low-complexity message would be the direct command: “Please touch your tongue to your lip.” Very simple, direct input of a very simple direct message. That’s in Quadrant A, the lower-left corner of matrix below.
However, if that very simple and direct message were delivered in writing, or via a picture, or in spoken or written French [Brianne’s second language], then we are at the upper left quadrant below, Quadrant B.
An example of the bottom right quadrant, Quadrant D, might be: “Squeeze my fingers when I come to the famous French existentialist: Auguste Rodin, Jean-Paul Sartre, or Michel de Montaigne?” (And, anyone who can say all those names properly gets their own gold star!)
And, if she can read that question, in French, and get the answer right, she’s probably in the upper right quad, Quadrant C. (You would show her the written command, and then show her one name at a time, letting her squeeze your fingers or some such response, when Sartre’s name came up.)
Try to end sessions on a high note – a success – when possible.
Be nonchalant about failures; be pleasant, but not pitying or gushy.
Be enthusiastic about successes, of course.
Wendi and I will sequence this stuff later. But, for right now, I’m thinking the breadth of inputs dimension could include, at the low end:
Direct commands (Say, “Touch your tongue to your lips.”)
Pictures + direct command (Say & show: “Touch your tongue to your lips if this is this is a chicken.”)
Direct commands, written (Show: “Touch your tongue to your lips.”)
Farther up the scale . . .
Grammatically difficult commands – multi-part, and if-then.
(Does she know sign language? If so, we can use this)
More complex writing.
And maybe French thrown into the mix since we know she was fluent in French prior to surgery.
The other dimension, message complexity, might run on a continuum like this:
Her immediate wants/needs.
Her wants/needs for Nate or other family members
Memories of people (E.g., “Which one of these couples is married?”)
Memories of events (E.g., “In which of these places did you drop a chocolate cake on the floor?”
General knowledge (current events, past events, geography, whatever).
Modest Demands are Required
Somewhat randomly, let me add this: I’m a big believer in stimulation for Brianne. Examples: playing music for her or rubbing her arm. Again, definitely a good thing!
However, stimulus-response-reinforcement is even better, at least now and then. That sequence places modest demands on her brain, and it confers control – something she has been sorely lacking.
For example, if we had a small, easy-to-push switch in her hand whereby she could turn music on for 30 seconds, then would be even better. Or, if she had a way to say, “I’d like to be alone for a while,” that would be terrific, too. Or, a way to say, “No.”
You get my point. It’s a matter of giving back her personal power, and it’s a way to place gentle demands on her brain.
Introduce Brianne to What We Are Doing-
Those working with Brianne should begin each session explaining what we are doing. Say something like:
“Brianne, we’re about to start a brain-training session. We’re trying to strengthen and grow the connections inside your brain — like weight training for the brain.”
And, the very first time, give her even more context. Assume that Brianne is Brianne, except that she can’t yet communicate. Respect and love her with your words and manner. Especially respect.
Give Her Power-
Wendi has suggested that the most important thing we can do is give Brianne the ability to make her wishes known, starting with “yes” and “no,” but perhaps soon to include “leave me alone” or “try something else.”
Incidentally, “making wishes known” might also include non-verbal means, such as pressing a button that triggers a pre-recorded verbalization. (Wendi found several oversized buttons that will accept such recordings.)
Very important: one goal will be to reduce the time delay between stimulus and response, such as a question and answer, or options and choice. Reducing response latency is how we reach fluency, cementing in gains.
Use Evocative Videos-
In addition . . . we believe it would be good for her to see videos of herself with friends and family and 30 – 60 second selfie-videos of friends/family recounting special and funny moments they’ve had with Brianne. We don’t want to overload Brianne with too much stimulation, but these videos sprinkled in here and there should be helpful.
Very specifically, Wendi feels strongly that the right use and timing of videos of *Alex will be particularly helpful.
Keep daily numerical data where possible. But, minimally, keep a daily diary with objective and subjective observations of how Brianne is doing. Such records will tell us when we’re making gradual progress, which is important; they’ll also get us through the tough but temporary slumps.