Autism Answer: Heavenly Home and the Words we use to Describe it

 
 

 I originally wrote this piece for my column on Disabled World. I am sharing it here with permission.

 

Louloua Smadi and Lynette Louise

 

A few years ago I was taking minutes in an important business meeting for All Brains Grow….

Okay, I will be honest with you. I wasn’t taking minutes exactly; I was taking notes. I wrote “taking minutes” because that asks you to picture me in a specific role; one where I am professional and potentially necessary, but not overly responsible for what is said or done. Taking minutes in a meeting is a requirement of many businesses, whereas taking notes is less professional sounding but a good idea.

In the meeting I was encouraged to be engaged, to include my thoughts and opinions, to recognize areas that were not being addressed or were hard to understand. Mostly, though, during those beginning meetings between Lynette Louise, Louloua Smadi and their team, my action was to take notes while they designed a website and online course meant to share the behavior, bio-play, and neuroplasticity knowledge they teach to families and schools around the globe. Responding techniques and brain science that effectively helps people with special needs and/or traumatized brains. All Brains Grow and they want to share with as many people as they can how to grow them with intention, confidence, and expertise.

I am Lynette’s daughter and personal assistant. I have been her daughter since my birth (unlike several of my siblings who came along at older, sometimes even teen, ages) and her personal assistant fairly consistently since my teen years.

Louloua is not my sibling, and though I feel sometimes like she is I am kind of glad she isn’t. If she were, I might have to be jealous. She is beautiful, multilingual, holistically intelligent, and ever so empathetic. More than that, she is enthusiastic about taking up the torch and partnering with mom while I am enthusiastic about being less hands on and more of a sideline cheerleader. I am not being self-depreciating, I do see my value from the sidelines, but I am also aware that my unwillingness to be in the hands-on position leaves me in a more comfortable less vulnerable space. Hence, I might be a little bit jealous of Louloua if she was my sister. (I recognize this because I am a little bit jealous of Brandessa, my hands-on leadership sister. I am also her enthusiastic cheer leader.)

Being invited to take notes and offer ideas to the All Brains Grow team as they began building an online course for parents around the world, using their combined experience and expertise, their delightfully different styles and cultures, I was full of gratitude.

As neuroplasticians, play therapists, moms, siblings, and individuals these women are aware and experienced in the art of caring about special needs and learning disabilities. They focus on environments and families.  Never on a broken child. A broken person.

They teach the science and skills of neurofeedback and bio-play.

Bio-play takes the science of biofeedback, the learning enhancement of play, and the knowledge of everyday living, and brings it together into a lifestyle of easy living while learning.
They are gifted at giving parents and caregivers the understanding and information necessary to become experts in the lives of their children and the home they are building. As I said years ago in my notes: Making bio-play effortless so time at home is easy and everyone grows smarter and healthier. Heaven at home.
 
And now, Heavenly Home is the name of the course.
 
And it is names I want most to mention here.

Due to their combined years of making change happen in lives that were desperate for it, making miracles happen with behavior science and persistence, knowing what needed to be taught and exampled in the course they were building wasn’t as hard to hash out as knowing what words to use in their lessons and literature.

And this is the thing: they work and live in different places around the world, languages change and people they work with most often struggle with communication, yet people are easily emotionally charged and ready to react unnecessarily strongly to word choices.

It is not the opinion of thinking people that we should not discuss the power our language has. Indeed, Lynette and Louloua are wonderful at pointing out how the language you use in your home will indicate deeper meaning and influence behaviors. However, whether you use terms like special needs, learning disabled, autistic, brain dysfunction, or neurodiverse, does not mean you are more or less “right” but more likely means you have adopted language based on what you hear and see around you. The names and words we use are worth examining. They are always worth considering, and changes in the way we speak of and to each other do make changes in the way we see ourselves and each other, leading to changes in our ability to gain skills and grow healthy.
 
But arguing about the words is not the point: considering them is. As I took notes that day, I listened to the women consider and care about the language.  Not to pander or push back but as a result of how much they consider and care about people.

This is the part we want to hold onto and take the strongest action on: the people we are talking with while we use our words. The people are the point, the words are our attempt to connect.

Those conversations and my notes are a few years old now. Since then there has been much filming, transcribing, consulting, and teaching. All Brains Grow is now a website with an online course for parents and caregivers of people with special needs that is being utilized by parents around the world. It is a beautiful way to use technology in order to help families in their homes, in the space they spend most of their time and where intentional informed responding most needs to happen.

Heavenly Homes is about creating a heaven at home by knowing what to do to help your family grow healthier and more skilled. Happier.

Heaven at home is knowing when to give attention and when not to give attention, knowing when (and what) to play and when not to play, knowing when to punish and when not to punish; knowing when to be scheduled and strict and when to be free and spontaneous. Heaven at home is being armed with knowledge so you can be a quick effective responder.

The name of the course is Heavenly Home.  Heaven is used because that is the feeling they want to create, the feeling the word evokes. It would not be impossible for people to choose to be angry at the heaven inference. They could decide it is blasphemous. Or they could infer that there is religion involved and choose to avoid it. Even scoff at it.

But Heavenly Home got its name on that day I was taking notes when the team talked passionately about wanting to help families create a space at home that was wonderful. Where they knew how to encourage growth, acceptance, and skill acquisition and be their own experts. Where they would know what to do when challenges presented themselves.
 
Knowing what to do is a heavenly gift.

However you choose to say it. 

Hugs, smiles, and love!!

~Tsara

 

Autism Answer: New Memoir Examines the Paths that Lead a Woman to a Diagnosis of Dissociative Identity Disorder

 Malnutrition, Memory Loss, and Multiple Personalities

 

Book cover

 

This month Robert D Reed publishing will be releasing the book In Search of Teressa: A Journey into the Mind of a Woman with Many Personalities, written by renowned author and neuroplastician Lynette Louise, aka “The Brain Broad." aka My Mom! 

It is my mom’s eighth published book and her second book published with Robert D Reed publishing. Her first with them was Miracles are Made: A Real Life Guide to Autism - back then the company was run by Robert and his wife, Cleone. Robert has since died and Cleone is now the editor and publisher, and an author herself. I worked with Cleone on the editing of this book and admit that I sort of feel like we've established a sisterhood. Not just me and Cleone, but me, Cleone, mom and Teressa.

My mom has been writing since my earliest memories (hers, too). She writes poetry, songs, academic abstracts and articles, books, shows, theater, and comedy shows. Almost always her stories are created with the intention to inspire and teach, to learn and grow, to surprise and submit uncommon perspectives. Almost always she writes stories based on her own life and those of us closest to her. 

This new book is her first written through the lens of someone else’s life and memories.

The book was written at Teressa's request. Teressa is a woman who - in adulthood - was diagnosed with Dissociative Identity Disorder (known colloquially as multiple personalities) and who has spent much of her lifetime searching for the answer to a self-proposed question: “Whose fault am I?”

With mom’s penchant for scientific seeking via outlier thinking and poetic prose, her exploration of this question is at once academic and wondrous.

The book contains two parts.  

Part one is written directly from Teressa’s own memories and version of things. The story unfolds in the fashion of fiction.  Readers dive in and are introduced to the unreliable power of memory and its significant role in the creation of who we become. Memory issues plague Teressa from her early childhood and onward.  She also suffers from a variety of physical ailments stemming from unexplained sources. However, it is not until her adult years, as a wife and mother, that she is diagnosed with DID. Nature vs nurture is on display as Teressa’s brain function is influenced by malnutrition, abuse, religion, retreats, and a love story that takes such careful care of her it becomes unhealthy. 

The second part of the book brings the author’s voice and observations to the forefront. As an international brain and behavior expert, my mom is experienced and thoughtful. She is there to write Teressa’s book, but also to help Teressa better understand herself and to take some control of her own healing. Living with her adult autistic son, my brother Dar, mom stays in the apartment above Teressa’s garage. Interviewing family, friends, and counselors, while sifting through documents, medical records, letters, and thousands of journal pages, the ways in which Teressa and her “alters” (alternate personalities) grew to be who they were by the time of my mom’s introduction to her is teased out. 

Instructively, but also painfully, the ways in which professionals were potentially culpable in the deteriorating of Teressa’s mental health begs to be recognized. This kind of breaks my mom's heart. One of those professionals is a dear friend and colleague of mom's. She loves her and owes much of her own career to her. She helps reverse her friend's Parkinson's symptoms while her friend lets her work under her license. They adore each other. Yet, the more she learns from Teressa and those around her, the more of an ethical conundrum she finds herself wading in. All of this she shares with readers. 

"The story of this one woman's life," my mom said to me on the phone, "demonstrates the degree to which our medical choices shape our past, present, and future."

Following clues, experimenting with kindness, keeping an open mind, these are at the heart of both science and art. This book utilizes these tools and engages readers because of it.

Throughout these pages my mom marvels at the parallels between their lives. My mom has a history that is similar to Teressa’s. Including a flirtation with similar diagnoses, in her youth. 

However, the two women ultimately ended up with very different minds. 

“I want readers to come away with a recipe for how to live a life that improves, moment to moment,” mom says regarding a key takeaway from her latest book. “A recipe for improving regardless of your history or situation.”

Both science and art do their best work when keeping an eye on the question they seek to answer, particularly when there is a willingness to adjust it.  “Whose fault am I?” was not a healthy question for Teressa.

“Do you want to be one unique person?” my mom asks Teressa on the page. When Teressa consistently and vigorously answers yes to this question, it is answers to that question my mom consistently and vigorously guides her to seek and find. 

How do we move from being a woman with over twenty alters to becoming one unique person? 

Though a diagnosis of Dissociative Identity Disorder is not common, it is intriguing. Surprisingly, it is also relatable.

Despite so much of Teressa’s story being unique to her, a woman who is unstable to the point of presenting “alters” (alternate personalities), it is consistently familiar. Places where Teressa chooses one way to think vs another, I have been there. Most people - particularly women - have. Most of us just followed a different thought or behavior bringing us to a different place, a different state of mind.

As is the power of all great science and art, In Search of Teressa tells Teressa’s story while reflecting for readers aspects of our own.

It will be available to purchase via online bookstores (Amazon, Barns & Nobel, Powell's) at the end of May 2024.

# # #

Autism Answer: Something About This Does That - A Way of Thinking About Behavior

 

A snuggle, a smooch, a long stretch of the arms and legs, a comment to or from my partner about how quickly the morning moves and oh my goodness we're getting up late again, a pee, a brushing of the teeth, and all of this while the promise of morning coffee percolates in my mind. Something about anticipating, picturing, brewing, and drinking my morning coffee fills me with feelings of purpose, joy, maturity, contemplation, and peace. All are feelings I enjoy and all are feelings I experience deeply while sipping my morning coffee, and then off an on in a variety of ways throughout the day. 

 It is tempting to say "my morning coffee gives me these feelings" but that wouldn't be right, or helpful. What if one day (dare I even type the words?) I can no longer drink morning coffee? *Ouch! That hurts!* What if, one day - not soon, please! - I am faced with reasons to no longer settle into my day by sipping this delightful drink? This gift of goodness? This beautiful brew? Though it hurts to imagine, I actually have reasons, even now, to consider this option. 

If my morning coffee gives me these feelings I adore, what would I be left with? So, no. The truth is this: something about my morning coffee fills me with these feelings. Feelings I love at the beginning of my day. Knowing it's not my morning coffee but, instead, something about my morning coffee, leaves room to explore what it is about it and find it somewhere else. (Going further, of course, I could say: Something about starting my day with theses feelings fills me with happiness. So, if those feelings are no longer lovely, I can explore what it is about those feelings I liked and find that somewhere else.) 

This is powerful shift in thinking. Less important, I admit, when talking about my morning routine. However, when thinking about how to help your children, or how to yourself or a loved one with autism, well - the shift is life changing! 

For example: "Something about the way he jumps and screams around new people is helping him," is more true and useful than "He has to jump and scream around new people." 

Even if you know nothing about how the brain works, the shift helps. It gives you the freedom to find new ways, less startling ways than jumping and screaming, to help your autistic loved one around new people. Rather than avoid new people, or tell all the new people merely "get over it he's autistic," you can all work together to figure out what it is about jumping and screaming that helps. Is it a way to push the anxiety outwards so it isn't hurting inside? If so, practice other ways of pushing anxiety out. Is it a way of pushing people away because the anxiety is too much? If so, maybe practice meeting one new person at a time for less anxiety. Or, if that is worse, many people at once for less anxiety. 

I admit, these are not the best ideas but they are ideas. And they are grown out of the knowledge that something about a behavior is helping (even when our behaviors hurt us we are doing them because in the moment they somehow also help or alleviate a hardship) and that we aren't just doing them because we're bad, crazy, attention seeking, etc. Also, it allows for the truth that we can find other ways as well. 

However, if you do understand a little about how the brain works, then you can find even brighter, better, more impressive, faster-changing ideas and actions. My mom, Dr. Lynette Louise ("The Brain Broad") and her protege, Louloua Smadi, are building a website (called All Brains Grow, here is a link to their Facebook page --> All Brains Grow) specifically meant to help people with this. Using the arousal model they help people become detectives who are able to follow behavioral clues in order to bring brains and bodies into balance. Are they jumping and screaming because of too many high frequency brain waves? Or, quite possibly, because of too many low frequency waves causing a need to stimulate higher frequencies by jumping and screaming? It's fun to find out and life changing to realize it is always true that we can find healthy ways to help ourselves. 

I wish All Brains Grow was around when I thought my son, Tyran, needed to have his Linkin Park CD playing at full volume in order to fall asleep. Back then I didn't realize it was "something about" his Linkin Park CD playing at full volume that helped him fall asleep. Had I known it was something about the loud as heck rock music, and not only the loud as heck rock music, I would have been more able to help him discover specifically what was going on in his brain at bed time. I would have been more likely to be less annoyed and more curious. And even if we never quite figured it out, we would have been a team. A team trying to figure it out. 

Note: the All Brains Grow website is not yet available, but there is a lot of valuable autism, neurofeedback, behavior, and brain growth information on my mom's Brain and Body website. Click the following link: BrainBody.net

So, when you're tempted to say to yourself: "I need quiet mornings to be happy," try maybe shifting it to, "Something about quiet mornings helps me wake up happy." That will be more honest and helpful. That way, if your rowdy grand-kids spend a few weeks with you or your neighbors get a new yappy dog, instead of thinking these noisy mornings mean you can't be happy, you'll have an opportunity to dig down to the core of yourself and discover what it is about quiet mornings you like. Maybe you can recreate what you like but in a new way. 

Heads Up: You may discover the most delightful way to wake up is to the sound of rowdy grand-kids and every quiet morning away from them is a challenge of its own. Something I heard from a friend. tee hee! 

The point isn't to not like quiet mornings of course, but to remember that it is something about quiet mornings you like - a not so urgent jump into the day, perhaps, that potentially messes with your high or low frequency brain - and you absolutely can find a way to like mornings of all types if you find yourself confronted with them. 

So, if there is something about this idea you like, yay! Feel free to share your thoughts. And if there is something about this idea you don't like, silly you. Try again. Giggle! No, feel free to share your thoughts. 

There's something about people sharing their thoughts that helps me think bigger, feel more, and learn from lives I cannot live. In encourage you to thoughtfully share your thoughts. 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)