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: Shoes - an Invention.

 

 

My shoes by a tree

Like a slightly cool tickle on my skin, that's how the early morning breeze felt. Summer's second half in Quebec offers the mornings I missed so deeply when living in Texas. 

 

Wearing a t-shirt and shorts I stood on our driveway, facing out toward the river across the street. I am not a particularly visual person, but it is a wonderful view. I focused on the feeling of my hands wrapped around my mug of coffee. It is a little warm, but more than that it conjures up an image of myself as a woman. In my youth I pictured a woman in nature, sipping coffee and contemplating the world slowly, as the iconic woman. The woman to aim toward becoming. By focusing on my hands, I was that woman. 

 

Next, I stepped my bare feet off of our concrete driveway and slipped them onto the grass of our lawn. 

 

The first thing I felt was the coolness, quickly followed by wet. The dew is delightful and refreshing on my feet. It feels like camping. 

 

The pleasure I take in each sensation is remarkable; you might think I don't do this most mornings. But I do. The pleasure does not fade. 

 

The thoughts that tumble through my mind are rarely brilliant, sensational, or earth shattering. But they are lovely. 

 

Informed by the environment and the sensations, my delight in the feeling of feet on cool wet grass this morning led me to think about shoes as an invention. 

 

As I moved around on the grass, under the maple tree and then away from it, sipping my lukewarm coffee and being that iconic woman, I imagined people ever so long ago moving about in bare feet and knowing no other way. Their feet would have been different from mine, and the sensations would have been different as well. There is something healthy about bare feet. But they also would have gotten deep cuts that lead to infections. They would have been unable to inhabit certain spaces or move as quickly in them. They would have been frostbitten. Their bare feet would have been much stronger than mine, but still bare. As foot coverings were invented they would have been celebrated, I'm guessing, by many. Also, I imagine, they would have been scoffed at. The feeling might have been weird and unyielding, and the disconnect from the earth might have felt unfamiliar and awkward. But the perks of protecting feet are very real. Life saving. And the ability to more easily go where we once struggled to go is always appealing. 

 

And then from simply covering our feet to creating shoes. I imagined two long ago cavemen as I moved from the grass back to the concrete pavers of our driveway where I enjoyed the rough texture and tiny runaway rocks - the grit - under my feet. I imagined these men discussing, with invisible to me communication, the invention of these shoes. 

 

One was adamantly against it. They made us less connected to the earth, they made our feet too soft and sensitive, they made people move into places on the planet not meant for us where we proceeded to beat it into submission, to renovate it for our own purposes. This would not be good, he communicated with grunts and motions and invisible understandings, for the way of life. 

 

His companion was declaring the ridiculousness of resisting progress. Nay, the cruelty of it. These shoes save lives. Not only by protecting feet but also by granting them the ability to move farther, beyond previous limits. Imagine the food they could forage! The food they could hunt! We had not been granted such thick paws or hooves like other animals, but we can make them. Make something better even.

 

As I imagined, I moved around again. Back I went to our lawn, bare feet on wet grass, the grass relieving me of the tiny pebbles that were sticking to the skin of my soles. The morning was beginning to pick up and a few cars passed by. There is a small road, as well as a bike path, between our lawn and the river. I like it. 

 

I sipped my coffee and imagined those cavemen recognizing that they were both right. I moved back under the maple tree to step up onto the wooden bench placed beneath it, granting me a neat feeling of being a little taller (standing on a bench) and also a little hidden (in the leaves of the maple tree). 

 

I imagined them sitting on boulders and wearing traditional caveman garb (I've seen the Flintstones so I know the style of the times.) while continuing to debate the various issues of their topic. Shoes. 

 

My bare feet were planted firmly on the bench, the skin of my legs and arms pleasantly tickled by the breeze, the sound of the leaves dancing in the tree above me, rustling, invited my lips to curl upward as I closed my eyes and tuned in. How I adore that sound! 

 

I imagined these cavemen knowing that shoes were not a bad invention, they did not disagree on that, but they could not agree on what was more important - limiting certain things or forging forcefully forward. 

 

As I stood on that bench in my bare feet, loving the option to walk this way in our grass, I noticed the cars becoming a little more frequent. I tried to sip my coffee and noticed there was no more to sip. I recognized it was time to head indoors and drive my step-daughter to her bus stop. 

 

Whispering a quiet imaginary goodby to my imaginary caveman friends I made my way into our large home with a pool, a solarium, five bathrooms (one ever so fancily outside by the pool), and climbed comfortably with my step-daughter into our 2016 SUV where she paused her tik toks (but did not remove her Bluetooth headphones) in order to chit chat with me while we drove through the light traffic, past a plethora of homes in a variety of sizes and styles, careful not to hit the many squirrels that like to fritter from tree to tree despite any roads between them, to her bus terminus. This I did happily and comfortably. 

 

But guess what?

 

I chose not to wear any shoes. 

 

Hugs, smiles, and love!!!

Tsara Shelton (X.com)

Book Review: Left Neglected by Lisa Genova

 

 

Left Neglected

Book: Left Neglected
Author: Lisa Genova
Publish date: July 2011
Paperback Pages: 352

 

I didn’t think my mom was lying exactly. It’s just – I don’t know, I couldn’t fathom it. I mean, she couldn’t see anything on her left? Only on her left?

My mom’s left hemisphere neglect – the result of an injury to the right hemisphere of her brain (she hit her head hard while working in Paris) - was short lived and minimally disabling, in part because mom is a brain and behavior expert with the skills, tools, and knowledge of how to help herself immediately.¹  Due to my mom’s ability to turn things around and make good use of them, it became like so many things happening to my mom: something that makes her seem weird while giving her a deeper knowledge and understanding of brain and behavior.

However, for so many others (including Sarah, the main character in Left Neglected) it is far more life changing and challenging.

Left Neglected is the second novel by Lisa Genova, author of Still Alice. Both books center on super successful women who are compelled to re-frame their own versions of success when confronted with neurological dysfunctions.

In Still Alice, the dysfunction is early-onset Alzheimer’s disease. 

For Sarah in Left Neglected it is left neglect, an arguably less famous but still significant condition.

The novel begins by dropping readers into the non-stop chaos of Sarah’s home and work life. Both Sarah and her husband, Bob, are competitive high achievers. They have three adorable children (I fell in love with them instantly!) and their oldest – a first grader – is struggling both at school and at home to follow directions and complete assignments. With both parents working all hours and paying for two homes they are blessed to also have the help of a twenty-two-year-old nanny, Abby. She lives ten minutes away, has a degree in psychology, and adores the children. 

The pace of their life, of the story, of Sarah’s inner dialogue, is go go go. There is always something needing to be done, someone needing to be delegated to do it, and goals to keep an eye on. It is hurried, but not unhappy. The group works well as a team and though they rarely take a moment to enjoy it, they are enjoying it. It fits into the dream they have for their lives.

However, Sarah is in an accident on her way to work and wakes up missing the entire left side of her vision. She cannot see or attend to anything on her left. The speed with which she moved through her life is no longer available to her.

It is hard to describe what it’s like to have left neglect. In Sarah’s experience (as in my mom’s) she thinks she’s seeing everything. Everything appears whole to her, yet she is consistently unable to see, feel, or attend to the left. For example, she’ll finish eating all the food on her plate, be certain it is all gone, yet everything on the left remains. She is not seeing it, but she also cannot recognize that she is not seeing it. Walking and dressing are nearly impossible at first because her left side does not exist for her. It isn’t paralyzed, it isn’t missing, it just isn’t.

In therapy she practices focusing on moving, seeing, feeling, and being aware of the left. These descriptions are fascinating and hard to hold onto. As a reader I both could and could not quite understand. Which, of course, is true of trying to understand anything completely foreign to our experience.

As the story goes on, now hindered by Sarah’s inability to see the left, we slow down. (Though Sarah does not do so easily! As in keeping with her character she plans to beat this thing; to impress everyone with her ability to win therapy.) In slowing down we see new things. Sarah’s mom reenters her life and it is a turbulent reunion. Sarah has anger toward her mother for not being available to her as she grew up. She struggles to allow her to be there for her now.

Sarah’s hardships inspire a new kind of connection with her oldest son, and together they discover creative ideas for their challenges with homework and reading.

Sarah’s internal debates about being handicapped are candid. At first, she refuses to accept herself as a disabled person. She feels certain that she can push and work her way out.

Hence, as adaptations are presented, she wrestles with the question of whether it is giving up to accept tools designed to assist her as a disabled person. Is it giving up to snowboard with assistance when she really wants to ski without it? Will she become complacent? Will she stop insisting on healing?

Lucky for us she chooses to accept the opportunities offered by the New England Handicapped Sports Association (NEHSA)² – a real organization – and we go snowboarding. Sarah’s world becomes bigger.

With this new movement, this new momentum and adaptations, Sarah sees a new idea for a different life that might suit her and her family well.

The book does a lovely (though not exactly subtle) job of reminding readers that many of us are voluntarily neglecting entire aspects of our own lives, for a variety of reasons in a variety of ways.

Because of Sarah’s brain trauma she gains a new beautiful relationship with her mom, she finds time and meaningful ways to be with her children, she accepts employment that feels holistically fulfilling. She does not judge the life she was living before, and indeed misses elements of it. However, by adapting she has also created something more suitable and sustainable for her family.

It is a nice reminder that we can be proud of who we were even when we choose to be someone new, evolving and progressing does not have to include disliking or disapproving of the past.

Left Neglected is a good book with a lovely message: that left neglect is a real thing so maybe my mom wasn’t making it up when she said she couldn’t see anything on the left.

(Hmmmm? Pardon me? I see, I’m being handed a note that tells me my mom was not, in fact, the moral of the story. I will rewrite that.)

Left Neglected is a good book with a lovely message: that a single moment can derail everything you’re becoming but if you do the work of adapting, if you do not neglect the opportunities and people around you, life can become a different yet equal success.

 

1.    If you are interested in my mom’s work as a brain and behavior expert, or simply curious about such a weird and wonderful mom of eight, you can visit her websites to see books, videos, and so much more, here: www.lynettelouise.com / www.brainbody.net

2.   To learn more about the New England Handicapped Sports Association you can visit their website by following this link: https://nehsa.org/

 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Communication is Hard But We Can Practice Clarity and Meaning What We Say

 

Pencil poised ready to write

Communication is hard. Verbal, non-verbal, written, performed, painted, or otherwise portrayed. English, French, doesn't matter. It's all hard. 

 

As a writer I used to feel as though I'd failed when something I wrote was misunderstood. Tens of people would understand*, and then one person wouldn't, and I'd feel I'd failed. I hadn't peaked as a communicator yet.

 

 *I was tempted to write "hundreds of people would understand" but let's be honest, I never had hundreds of people reacting openly to my writing. That's okay! It's more manageable this way!

 

How silly of me! Pay attention for any amount of time to the world around us and we see communication is always imperfect, even when done perfectly. Did I think I had some magical power of writing that could transcend all others? <--- no, but I've wished it.

 

All of our readers, listeners, neighbors, family and friends, are engaged in their own interpretations based on experiences, level of understanding or intelligence, specific interests in the moment, mood, prejudices, agendas. We are, they are, the world is. 

 

It is one of the wonderful wonders of attempting to communicate. And it is also one of the hardest parts. 

 

Having four autistic brothers who were impacted by the disorder in varying degrees, I grew up craving some sort of device that would allow me to understand them. And for them to understand me. "I love you, but please stop jumping and screaming and making everyone stare at us," I wanted them to know. "Why do you wrap your lips around hot tailpipes?" I wanted to understand. 

 

The jumping and screaming, the lips on hot tailpipes, there were reasons for those (confession: my mom had to teach me that. I actually thought the reason was "they are autistic" and am forever grateful that my mom insisted we explore further) and there were reasons for them to learn which were okay where and which were terribly dangerous. But, communication is hard. 

 

For absolute certain, though, it is worth practicing. It is worth teaching. It is worth honing. 

 

There is a saying: It isn't enough to write so you will be understood. You have to write so you can't be misunderstood. 

 

It is a lovely idea, but if you gauge your ability and success as a communicator by needing to be entirely and always understood, you will lose. 

 

Debates about the meaning of words and art by the greatest communicators are forever engaging interested minds. Not because the communication was poorly executed but because we all understand different things differently. It is a guaranteed product of this desire we have to connect! 

 

I think, instead, it is worthwhile to communicate with clarity. To practice being clear and meaning what you say. To not adjust the meaning in order to be applauded or appreciated, though we will adjust the methods and style. 

 

There is a Lily Tomlin quote I love: We are all in this alone. 

 

It reminds us we are all here, but we are never able to not be alone in ourselves. At least, that what it communicates to me. Who knows what Lily Tomlin actually meant? 

 

Maybe not even Lily Tomlin! 

 

That's the other thing. We can be clear, we can say what we mean and then change and grow and no longer know what we meant. 

 

But now, in this moment of infinity, as we try to communicate, we can practice being clear and meaning what we say. 

 

And that is what I'm trying to say. 

 

I mean it. 

 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)

 

Autism Answer: Inclusion - My Brother, Dar

*This originally appeared in the May edition of my mom's newsletter, The Loop!*

 

 

My brother, Dar

 

 

The book my mom wrote with and about Teressa (a woman in California diagnosed with Dissociative Identity Disorder) includes so many interesting personalities.

 

Some speak from beyond the grave. Some speak from holy text. Some speak from within the fractures of Teressa herself.

 

One personality remains steadfast and supportive, often at mom's side, and it is that personality I want to draw attention to: my brother, Dar.

 

During the course of writing this book and living on Teressa's property, Dar and mom have worked together. Dar's lack of words has never equaled lack of communication, and in this memoir he speaks clearly. He steps back when people need mom to focus on them, he reaches out when they need a light touch, he is a sounding board for mom as she works to illuminate issues and consider moral conundrums. He is there to hug her when she cries and then to remind her of her strength.

 

The way my mom and Dar work together is a hard core real life example of the power of inclusion.

 

Inclusion is a collaboration.

 

It is not: put your own needs aside, move over and make accommodations.  

It is not: fit in, don't show up if it's going to inconvenience others in order to assist you.

Inclusion is collaborating to accommodate and assist each other in the direction of a common goal: living our full lives.

When you read In Search of Teressa you will feel the power of that collaboration.

 

And you will be rewarded.

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook) 

 

 

My mom and my brother, Dar

 

 

You can see all of my mom's books, including the one I am referring to in this post, on her websites: 

 

www.lynettelouise.com 

www.brainbody.net  

 

Book Review: In Search of Teressa: A Journey Into The Mind Of A Woman With Many Personalities by Lynette Louise

 

 

Background: My mom wrote this book. Actually, she talked this book into audio recordings, sent them to me to transcribe, then read it to Teressa who made a few clarification requests, then made those changes and sent it to all the people talked about in the book for their thoughts and requests, then made changes, then allowed an editor and publisher to play with it, then helped design a cover, and then it was published. But, ya. My mom wrote this book.:D

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.

In partnership with Teressa, a woman who has been diagnosed with dissociative identity disorder and has been suspected as having anywhere between twelve and twenty-three alters (alternate personalities), In Search of Teressa is written in two parts. 

The first part describes Teressa's memories. Her childhood, her life as a wife and mother, her attempts at creating and discovering herself as a woman via retreats, counseling, and religion. It is written from Teressa's point of view, from her idea of how it was and what was done. There is a childhood of malnutrition, alcoholism, physical illnesses, and memory loss. There is an adulthood with murder, true love, family vacations, and alters.

Her story is not told chronologically, and actually begins with the murder of her adult daughter. As readers bounce back and forth from Teressa’s later years to her early years and back again, it is reminiscent of how Teressa’s life is lived in her mind. A continuous bringing to the present slights from her past.

The second part of the book is my mom's story, alongside Teressa. It includes my brother, Dar, who is autistic and almost always at her side. My grandchildren are there. Mom interviews the people in Teressa's life and they are mostly accommodating. 

During mom's first meeting with Teressa's brother he sits in the sunshine outside of the house with the door open while mom and Teressa sit inside. It was during the COVID-19 lock-down and I suppose accommodations were the norm, yet it is a memorable scene: socially distancing siblings discussing a childhood of playing dick detective (hiding in the backseat of their drunk dad's car to see if he cheated on mom, per mom's orders), sharing one onion between them and feeling tangible guilt over not sharing with the other children, putting poop in the backyard cesspool due to broken pluming, and so many other memories. Often their memories would match in terms of what happened. Often, though, they would disagree on the reasons, the meaning, the why or message of the memories. 

My mom is an international brain and behavior expert so she is qualified to understand what is going on in the brain and how it is influenced by the people guiding it as well as by the body it is in. The hormones and chemicals as well as the story it is being told. This second part of the book is the piecing together of Teressa's truth as mom helps her find the path to becoming one unique person.

There are many parallels in the lives of both my mom and Teressa, yet the people they become have stark differences. This is something that shines throughout the book. The hand we can play in creating ourselves even as we are not in control of all the elements.

By the end of book two my mom and Teressa have made giant strides toward a unified Teressa, a happy Teressa, and made plans for ever more growth. Along the way, readers learn much about how memory works, how we are building ourselves with the beliefs we hold, how we can take advantage of the brain’s plasticity for our own benefit by purposely changing certain behaviors, and how we can be kinder to each other without being so supportive we push our loved ones deeper into unhealthy mental states.

 The entire book is fantastic. It is engaging and informative. It is poetic and scientific. It answers and asks. It is a story that makes us question our own memories as it tells us how to remember.

I highly recommend this one! 

Follow this link to view the book on Amazon: In Search of Teressa 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)