I am sorry to hear about the possibility of a neurodegenerative disease.
With respect, I’d offer that multiple things can be true side by side: mental activity changes the brain, mindfulness practice has many benefits including altering brain structure and function, and sometimes illness or dysfunction still comes our way. For me, acquiring an illness is nothing to be guilty about! Instead of the self-criticism implicit in guilt, self-compassion is called for, and gladness and self-respect for all the good practices you have been doing over the years.
Last, I am not aware of any research on this (though there might be some I don’t know about), but to me it is plausible that repeated mental training focused on what might be deteriorating (such as memory or motor control) could have benefits, at least in slowing the progression of illness or in strengthening compensatory factors or processes.
Unfortunately, I can’t give any specific advice. But I could offer these general ideas:
While I’m not a specialist in this area, the one thing I have heard is the potential value of neurofeedback – especially from someone who has a lot of experience with it. Perhaps you could find a good person in your area. I presume you are working with medical professionals, too.
When using mindfulness as a recovery tool from a TBI, remember that persistence, gentleness, and curiosity are important factors. Persistence means a steadily increasing capacity for cognitive exertion. This will take effort and stamina but in the end it pays off. Maintain a gentleness towards yourself throughout the recovery process, with patience and perseverance, and keep curious about new possibilities or practices that will maintain your momentum towards recovery.
Meanwhile, to me common sense would include good brain health practices in general: try to disengage from stress as much as possible, look for opportunities for positive emotions, avoid toxins, and take high quality fish oil – and avoid any blows to the head.
I can’t give any specific advice, but I think focusing on strengthening the executive functions and working memory is a great place to start. These are truly trainable functions. Check out the literature on executive functions and how to improve them; I encourage people to use fun tasks like cooking or crafts that require multi-step actions.
You could also try to extend his capacity for digit-span backwards. How many numbers can you repeat backwards if you say them forward? Then try to increase that quantity by one or two. This is a great working memory task. You can do other things that are visual-spatial.
Focusing on concentration practices in meditation – distinct from open awareness – could also help. For example, can you stay present with ten breaths in a row? How about a hundred? (A way to do this is to hold the hands gently closed to start, and open one finger at a time as you do ten breaths).
I’ve never used them myself, but you could also check out some of the brain training programs like Lumosity, including those for older people. You aren’t demented, of course, but the practices that increase cognitive control and memory for older people might be helpful.
Last, obviously, keep stress low and love and happiness high.
First thought: bows to you for the work you are doing and service you are offering. Regarding the woman, I suspect from what you have said that she has said, she was given vague and even misleading information about her head injury. As a way to think about all this, with some general suggestions:
My own experience with tinnitus, plus the advice of several physicians, has been to disengage from and generally ignore the tinnitus as much as possible. So, in open awareness, while the sound is there, so much else is there in consciousness as well, including the sense of spaciousness itself.
In particular, it might be beneficial to focus on the sense of the whole body, the body as a whole, abiding as a whole body breathing.
You might also check out my article, Blocks to Inner Practice, which offers some ideas for how to work with any blocks that might come up in meditation, yoga, gratitude and mindfulness practices.
There are several interventions and treatments that might help in this situation:
From what you say, it sounds like your daughter may have “dyslexia,” or perhaps a simpler problem with “visual processing.” Reading problems are very common, both among children and adults. If you think about it, reading is a very unnatural thing to do. In fact, no one read until about 5000 years ago when written language began to develop! So it is normal to have difficulty with it.
There are many approaches for addressing issues with reading, depending on the underlying causes. Sometimes a child simply needs glasses. Other times the issue is with “visual discrimination,” with rapidly discerning the small differences between little squiggles such as “p” and “g,” “d” and “b,” or “x” and “+”. Often there is an issue with “auditory discrimination,” with tracking the rapid changes in speech sounds. The first step is relating those phonemic units to letters and syllables in words. Commonly, the deep source of reading problems is a difficulty in relating visual processing to auditory processing, to rapidly associating the shapes of squiggles on a page (e.g., letters, syllables, words) to the sounds that are the basis of the oral language one learned as a young child before later learning to read (visual language).
This probably seems very complicated, and perhaps overwhelming. But really, most reading issues work out over time. What is important is to understand it is not the child’s fault, and that reading and related school activities can feel embarrassing and stressful for a child – so she needs extra understanding and nurturing, extra compassion and kindness.
I suggest you speak to the people at your daughter’s school and see what resources they can offer. By law, even if a child is going to an independent (private) school, she has access to the services of a public school if she has a significant learning issue. Informally, her classroom teacher might make some adjustments. More formally, the school could form a “student study team” to coordinate their efforts for her. Most formally, your school district could develop an Individual Educational Plan (IEP).
Additionally, it is often very useful to work with people privately, outside of the school system – people who work for you and who are accountable to you – such as a psychologist, who can administer tests to assess what is actually happening and what the causes are, or a learning specialist, who can work with the child individually. There are helpful literacy programs, such as Slingerland or Lindamood-Bell.
As you take these actions, step back every few months and try to evaluate whether they are helping. In a hypothetical example, if your daughter has a general intelligence in the top fifth of children her age but her scores on reading tests are usually in the bottom fifth (and this doesn’t improve over time, even if her reading ability improves), the large gap between her ability (general intelligence) and performance (reading skills) is not getting any narrower. When there is a lack of improvement over several years, everyone involved needs to pause and figure out what to do differently, and not just keep doing the same old things.
At home, it usually backfires to put pressure on a child related to reading. Be sure to make reading fun rather than a scary and stressful chore. When reading with her, you could gently encourage her to try to sound out some of the words, almost as a kind of game, but if she can’t quickly figure out a word, just tell her what it is so she can get a sense of the sentence as a whole, the paragraph as a whole, and the story as a whole. Reading should be rewarding – otherwise she will not be motivated to make the effort to get better at it.
Most of all, stay focused on big goals such as a love of learning, feeling good about herself, developing abilities that are not related to school (e.g., understanding others, music), and a comfortable low-stress relationship with her parents. These are more important than being a good speller or a fast reader. Sometimes people chase improvements on test scores that come with great costs to overall well-being and relationships. There are many successful, intelligent, and happy adults who function very well in the world, and who also continue to find that reading large amounts of text is slow and effortful, and who find other ways to get their information.
Keep reading in perspective and take the long view, rather than getting trapped in fixating on short-term goals, such as this week’s spelling test.
I’m not a specialist in autism or neuro atypical people, but I have had a fair amount of experience with this territory. My classes etc. could be useful in building up psychological resources – like self-awareness, self-control, mindfulness, self-worth, calming, etc. This would not directly address core spectrum issues but would be very helpful alongside them. Additionally, my classes, etc., might possibly be useful for core issues related to empathy, sensory flooding, and the internalization of the felt sense of being cared about.
In terms of things that might help, I’m assuming you have done sensible standard things like therapy. In terms of some options that might be helpful, you could look into:
And of course, keep knowing and feeling your own obvious goodness.
Dr. Ramani Durvasula is a licensed clinical psychologist, author, and expert on the impact of toxic narcissism. She is a Professor of Psychology at California State University, Los Angeles, and also a Visiting Professor at the University of Johannesburg.
The focus of Dr. Ramani’s clinical, academic, and consultative work is the etiology and impact of narcissism and high-conflict, entitled, antagonistic personality styles on human relationships, mental health, and societal expectations. She has spoken on these issues to clinicians, educators, and researchers around the world.
She is the author of Should I Stay or Should I Go: Surviving a Relationship With a Narcissist, and Don't You Know Who I Am? How to Stay Sane in an Era of Narcissism, Entitlement, and Incivility. Her work has been featured at SxSW, TEDx, and on a wide range of media platforms including Red Table Talk, the Today Show, Oxygen, Investigation Discovery, and Bravo, and she is a featured expert on the digital media mental health platform MedCircle. Dr. Durvasula’s research on personality disorders has been funded by the National Institutes of Health and she is a Consulting Editor of the scientific journal Behavioral Medicine.
Dr. Stephen Porges is a Distinguished University Scientist at Indiana University, Professor of Psychiatry at the University of North Carolina, and Professor Emeritus at both the University of Illinois at Chicago and the University of Maryland. He is a former president of the Society for Psychophysiological Research and has been president of the Federation of Behavioral, Psychological, and Cognitive Sciences, which represents approximately twenty-thousand biobehavioral scientists. He’s led a number of other organizations and received a wide variety of professional awards.
In 1994 he proposed the Polyvagal Theory, a theory that links the evolution of the mammalian autonomic nervous system to social behavior and emphasizes the importance of physiological states in the expression of behavioral problems and psychiatric disorders. The theory is leading to innovative treatments based on insights into the mechanisms mediating symptoms observed in several behavioral, psychiatric, and physical disorders, and has had a major impact on the field of psychology.
Dr. Porges has published more than 300 peer-reviewed papers across a wide array of disciplines. He’s also the author of several books including The Polyvagal Theory: Neurophysiological foundations of Emotions, Attachment, Communication, and Self-regulation.
Dr. Bruce Perry is the Principal of the Neurosequential Network, Senior Fellow of The ChildTrauma Academy, and a Professor (Adjunct) in the Departments of Psychiatry and Behavioral Sciences at the Feinberg School of Medicine at Northwestern University in Chicago and the School of Allied Health at La Trobe University in Melbourne, Australia. From 1993 to 2001 he was the Thomas S. Trammell Research Professor of Psychiatry at Baylor College of Medicine and chief of psychiatry at Texas Children's Hospital.
He’s one of the world’s leading experts on the impact of trauma in childhood, and his work on the impact of abuse, neglect, and trauma on the developing brain has impacted clinical practice, programs, and policy across the world. His work has been instrumental in describing how traumatic events in childhood change the biology of the brain.
Dr. Perry's most recent book, What Happened to You? Conversations on Trauma, Resilience, and Healing, co-authored with Oprah Winfrey, was released earlier this year. Dr. Perry is also the author, with Maia Szalavitz, of The Boy Who Was Raised As A Dog, a bestselling book based on his work with maltreated children, and Born For Love: Why Empathy is Essential and Endangered. Additionally, he’s authored more than 300 journal articles and book chapters and has been the recipient of a variety of professional awards.
Dr. Allison Briscoe-Smith is a child clinical psychologist who specializes in trauma and issues of race. She earned her undergraduate degree from Harvard and then received her Ph.D. in clinical psychology from the University of California, Berkeley. She performed postdoctoral work at the University of California San Francisco/San Francisco General Hospital. She has combined her love of teaching and advocacy by serving as a professor and by directing mental health programs for children experiencing trauma, homelessness, or foster care.
Dr. Briscoe-Smith is also a senior fellow of Berkeley’s Greater Good Science Center and is both a professor and the Director of Diversity, Equity, and Inclusion at the Wright Institute. She provides consultation and training to nonprofits and schools on how to support trauma-informed practices and cultural accountability.
Sharon Salzberg is a world-renowned teacher and New York Times bestselling author. She is widely considered one of the most influential individuals in bringing mindfulness practices to the West, and co-founded the Insight Meditation Society in Barre, Massachusetts alongside Jack Kornfield and Joseph Goldstein. Sharon has been a student of Dipa Ma, Anagarika Munindra, and Sayadaw U Pandita alongside other masters.
Sharon has authored 10 books, and is the host of the fantastic Metta Hour podcast. She was a contributing editor of Oprah’s O Magazine, had her work featured in Time and on NPR, and contributed to panels alongside the Dalai Lama.
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