Autism Answer: Autistic Communication - a conversation

 Originally published in  The Loop

 

Mom & Dar

 Communication

 The exchange of thoughts, messages, or information, as by speech, signals, writing, or behavior.

My mom has been teaching the value of believing in, listening to, and raising the bar for people my entire life. I am the oldest of her eight children and admit, it didn't come natural to me, this believing beyond appearances thing.

But in our home we were not allowed to ignore ideas that might uncage people. Specifically, in my youth, my brothers.

So I pretended. I pretended I believed my four adopted brothers were as capable and "like us" as my mom clearly wanted them to be. I pretended, but with mom's consistent guidance it wasn't too long before pretending shifted. Not only for me, but for my brothers and others as well.

My brother, Dar, who is most severely impacted by autism, was the most challenging for most of us to recognize as relatable. Sure, he was handsome, but the jumping, rocking, stimming - none of it seemed to be for reasons anyone could fathom.

And goodness knew he wasn't telling us.

Or, was he?

Mom insisted he was. She listened to his habits, his sounds, his reactions, his motions... she listened with her eyes, her touch, her ears, her heart. She asked him to speak, to type, to show us what he wanted to say...

Years and years of this, and as a family we all grew to understand Dar better. His speech, though, we understand least of all. Mom understands the words he says better than anyone else, yet still she mostly misunderstands or invents based on likelihoods.

As a brain and behavior expert who works with families all around the world, mom says this is common. This misunderstanding and assuming the words of our loved ones with speech issues.

There is so much value in knowing the speaker who is hard to understand is saying something, is worth working to hear and help. Just that belief alone makes a difference and can help us hear each other better.

But more is needed. We want more than what the belief can do - we want to move into solutions that take us farther.

Mom and Dar are working on that.

In the meantime, please enjoy the short video below of my brother, Dar, answering mom's questions with patience while mom misunderstands a lot. It was only during the playback that mom realized what Dar had actually been saying and Dar was able to confirm. (the captions are for those of us who are unsure of his words)

 

 

 

As we close out Autism Awareness Month, I encourage you to enjoy all the videos in my mom's Autism On The Road series. 

As my mom and brother live a nomadic lifestyle (in their RV, in hotels, invited to stay with family and friends around the world - from California to Montreal to Texas to Paris to Lebanon to Manitoba... a few months from now they'll be in Australia) their intentions have been largely to teach and to learn. As an autistic man my brother tends to inspire questions and reactions, which he and mom like to address with comfort, clarity, and kindness. 

Also, as an autistic man living in a variety of spaces, my brother necessarily needs and wants to learn new environmental skills. Food, toilets, and other expectations and availabilities shift and change, often drastically.  By spending the time closely with mom, they learn how to handle these things together. 

Lately, a big focus has been on communication. Communication of all sorts but, in particular, Dar is focusing on speech. When he watches the videos he's surprised by how unclear his language is. When mom watches them, she's surprised by how much of his language she had misunderstood.  

Together they watch them and Dar helps mom understand. Captions are added and the videos are shared.

They are the most recent (and shortest) videos on the Autism On The Road Playlist, and I recommend them. Of course, I also recommend the entire series! 

Follow this link to view the playlist: Autism On The Road  

 Hugs, smiles, and love!!

 Tsara Shelton (X.com)

Autism Answer: Nonverbal Communication and Telepathy

 

 

My brother, Dar

I originally wrote a version of this piece for my mom's newsletter, The Loop!

______________________________________________

 

"Nonverbal communication is the transmission of messages or signals through a nonverbal platform such as eye contact, body language, social distance, touch, voice, physical environments/appearance, and use of objects."

Telepathy is not on that list of examples, but it does say "such as" which implies the list is incomplete. Perhaps we can expect more examples to be told to us directly, in our thoughts. Telepathy-like.

If you have not yet been informed of the popular podcast and upcoming documentary The Telepathy Tapes, then my comment may seem rather unexpected. (I did try to warn you with telepathy that I was going to bring this up, but perhaps my aim was off?)

From their website: The Telepathy Tapes dares to explore the profound abilities of non-speakers with autism. These silent communicators possess gifts that defy conventional understanding, from telepathy to otherworldly perceptions, challenging the limits of what we believe to be real.

From me: I remember my mom (international brain change & behavior expert Lynette Louise, "The Brain Broad") telling us kids about a variety of times our autistic brother, Dar, and our mom communicated in this way.

In fact, at 36 minutes into the documentary The Indigo Evolution (click this link to watch on YouTube) mom shares a story about Dar telling her telepathically not to have an affair. (The story is funny but, as is mom's style, it is also deeply insightful and thought provoking... while being funny.)

People who spend time with autistics (or indigo children or similarly labeled individuals) are inclined to notice the unexpected and seemingly magical habit many of them have for feeling the energy and judgements in a room full of people; of making sudden and aware eye contact in answer to a thought in the mind of a parent or sibling; of laughing at a joke someone in the room is only thinking about telling; of projecting, or pushing, words into the minds of caregivers. 

This is too common to be ignored.

Exploring the communication of telepathy is wonderful, and I have experienced it myself. My mom and I shared dreams a few times when I was little, before I learned not to believe in it. I suppose we may have shared dreams after that as well, but by then I chose to presume coincidence or consider it crazy.

Knowing that our non-speaking brothers and sisters do have things to say, things that are unique to them and their perspectives, is oh so necessary. Exploring the variety of ways in which they express themselves and choose to communicate with us is what it is to care, and to do science.

However, we must be careful! We must avoid magical thinking - ooohhh, they have special powers and are beyond us! 

And we mustn't turn the story into one that denies disability. 

All too often a fight for acceptance trips over into a fight to indulge our instabilities or disabilities.

When one sense is lessened we often enhance another. This we know. But it's not like the superpowers we see in film and comic books, and I think we know this too.

When my mom first adopted our autistic brother, Dar, my little sister and I watched the movie The Boy Who Could Fly with fascination. The boy in the film is autistic (a term we had never heard before mom adopted Dar) and though the boy did not talk, it turned out he could fly. So, our new brother must also be able to fly! We waited, we asked him, we closed our eyes and told him to do it while we weren't looking. Eventually, disappointed and disillusioned, we came to realize that our brother was not going to fly. We gave up asking him. In fact, for a while, we sort of gave up on him. Our poor brother. He probably wanted to fly away from our disappointed attitudes. 

Our dear brother. His lifelong quest of attempting clear communication has been fraught with challenges. When he was still in school and practicing facilitated communication, his ability to push words into mom's mind, but not often the mind's of others, was initially frustrating and eventually dangerous, causing a few terrible situations. One leading to a painful court case. She explores all of this in candid detail in her phenomenal book Miracles are Made: A Real Life Guide to Autism (published 2011).
  

Neither mom nor I have yet listened to The Telepathy Tapes, but we both appreciate their relevance. My mom more so. Not only because of her own experiences but because of the conversations and challenges she sees in homes around the world. For more than forty years my mom has been discussing this phenomenon with families from every culture, economic background, and belief system. It is not an uncommon issue and it deserves to be explored. Carefully. 

If autistics can communicate using more of their senses, it follows that most of us have the potential to do so as well.Whether it is telepathy or other advanced skills of nonverbal communication it is worth our attention.

The power this science can have to guide - or misguide - us as a community is clear.

Not the science itself so much as how we handle it. 

Let's handle with care. 

Hugs, smiles, and love!

Tsara on X.com

 

 

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: 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  

 

Autism Answer: Allow, but also Push - aka Old Lady Wisdom

 

Me trying to show my age but also using the vignette feature to try and make the photo look cool and not just like I'm trying to show my age :D

 

Ever since I was a little girl I've enjoyed the feeling of picturing myself as an older woman. 

 

More specifically, I'd imagine myself as a wise older woman with a smile, an approachable kindness, and a life alone in the woods. I would push myself in that direction. No rush, of course. I like enjoying all the states I'm in while I'm in them. But I would imagine my older self with a happy anticipation. 

 

Interestingly, I never imagined myself feeling older. 

 

Now, as I'm enjoying my 50th year, I am noticing that the feeling older is something worth paying attention to. No, I do not want it as badly as I want to look older, but I also do not want to hate it. I want to allow my age while I push in the direction of feeling great in my mind and body. 

 

I want the privilege of being older and I want to embrace it holistically. 

 

Which means celebrating the appearance, cultivating the wisdom (which my little girl self, with her lack of wisdom, had assumed simply happened when you got old), and focusing on the way I feel. 

My focus on how I'm feeling is to better understand others and to have more of those spectacular, "Oh, now I get it!" moments I continually crave. I freaking love stepping into a new understanding.  

Also, though, it is related to my desire to be an active participant in my own evolution. I want to feel myself age while I explore what that means for me, and while I challenge what it could mean for me. I want to be strong in my refusal of certain elements while being brave in my acceptance of others. I want to decide where to be strong and where to be brave as the evolution continues. I want to do this in real time, not predetermined. Not unthinking. Unaware. Unkind.

It is a valuable skill, knowing how to both accept and push against. My mom exampled this fantastically with my autistic siblings: they were to be accepted and allowed to be themselves while also pushed in healthy directions, growth, and skill acquisition. 

 

Each of my mom's children (there were eight of us) were unique. Which meant there had to be flexibility and understanding of where one could be pushed while another ought to be accepted. We grew up in a home that knew we were all equal but not the same. We knew not to judge each other for which skills we chose to work on, which feelings we insisted on finding, which challenges we chose to accept and rise to meet.

 

So, yes! I will allow age to enter me everywhere. The little girl in me claps with appreciation over how far we've already come and bounces with excited anticipation over what awaits. (Although she might be a little disappointed at how long it's taking the wisdom fairy to give us our old lady wisdom magic. tee hee!)

 

As I allow I will also insist. I will insist on pushing toward my own version of how age feels in my body.

 

Push, but also allow. Allow, but also push.

 

Because I am old I am wise enough to know this is worth doing.

 

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Our Example Is More Than What We Do While Our Children Watch

 

One of my granddaughters sweeping

 

 

Our kids do learn from our example. I know they do. But.... 

 

Working hard while they watch doesn't mean they're learning to work hard. Reading great literature while they climb all over us on the couch doesn't mean they're learning the value of great reading. Maintaining a comfortably clean environment in their presence doesn't mean they are learning to do the same. 

 

Our example is more than what we do while our children watch.

 

It is also how we include them in what we're doing, it is how we explain our reasons for doing what we do, it is the ways in which we guide them to try, to join us, to tell us their reasons. 

 

It is our own attempts at meeting them half way that help them more honestly notice us and our example.

 

Regardless of our children's abilities, styles, basic personalities, they are learning from our example. But that does not mean we can simply do things we think are good while they watch. Because what they are seeing when they watch is not actually the thing we are doing. 

 

What our children see is themselves. Particularly our children with sensory issues and social challenges. They are contending first with themselves, and what they see of our example grows out from there. 

 

If I keep a clean house but don't show them why or how, my children will not likely learn to keep a clean house but, instead, will likely learn (from my example) that they should expect a house to be kept clean for them. (Don't worry, I did not do that. A clean house? Ha!!) 

 

So, yes. It's nice to know that if we work at always being a good example for our children they will learn from it. But it's important to know that what they will learn is always up to them, and that the only guaranteed bonus of setting a good example is that we ourselves will be someone we believe is a good example, and we will be able to remember having done that for ourselves and our children. 

 

Our children do learn from our example.

 

Even if what they learn is to throw my books away because when I am reading great literature on the couch I am not doing a good job of paying attention to them.

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook) 

 

 ADDENDUM -

An example of what learning from example can look like from my own childhood: 

 

My mom raised a lot of kids. I am the oldest of eight and not only did mom raise all eight of us on her own, she often allowed for others to live with us while she helped them raise up as well. People with disabilities, people who were severing themselves from abuse, people who were simply unhoused, mom was always open to finding ways they could help each other. In this environment, mom expected us to all pitch in. Us kids were often delegated to the work of keeping the house going; cleaning, lunch making, putting brothers to bed. In the meantime, what I saw was my mom doing the important work. The work of helping people with challenges, writing articles or shows meant to change the world, finding work that was inclusive and would pay enough to feed, house, and clothe our family. Mom also did most of the housework, but I didn't actually notice that. I wasn't watching that. I was growing an opinion that housework can be done by anyone but the important work, the stuff that matters, is done by someone special. Someone who sees what others don't see. My opinion was bolstered by the fact that I did not see what my mom saw, until I listened to her explain and teach it, and then - yes - I would see her insights exampled in the results. 

I know she was not exampling "people who spend time cleaning the house are not special people with wisdom and important ideas" but as time went on I began to develop that belief from her example. I grew to feel less than when I would clean, I started to think mess was a sign of brilliance, but I also did not have the courage or even the ideas for the other work my mom did. For a lot of years, I just sort of stayed in mess and played with my kids and worried I was not wise or important. Luckily, I also learned from mom's example that being a mom who is all in, a mom who is entirely into the role and willing to do the work of becoming better along the way, is important and wise. So, ultimately, I grew beautifully. In part because of mom's example and in part because of how I saw myself while learning from it.

Autism Answer: Hold Him This Way

 

Declyn and me

"Hold him this way," my mom suggested, holding my youngest son up in her arms, away from her body, while encouraging eye contact with her loving smiling eyes. 

 

He was little, in my memory not quite a year old, but we were noticing sensory stuff and lack of eye contact. We weren't worrying about it but we were noticing. And we were following his cues while hoping to help him feel our love. 

 

As Declyn grew, this sort of noticing and following and leading continued. 

 

He had a debilitating case of hyper empathy, any amount of uncomfortable energy could hurt him to the point of a meltdown. Meltdowns he chose to have alone, crying and talking to himself (or the people embroidered on his pillow) until he was alright. He got good at helping people sort out their feelings, which was a form of self-preservation. He had sensory issues that affected him in several ways: he vomited often, he was overstimulated often, he wanted to wrap his fingers in my wet hair often. 

 

In each case when I would notice, I would follow his lead and then attempt to help him make sense of what was going on for him and then lead him towards comfort - with himself and the world around him. 

 

Parenting Declyn was wonderful. We were close. We understood each other. We had deep conversations and shared our inner selves. 

 

At least, that's what I thought. 

Declyn

Turns out, I was quite mistaken! 

 

Oh, we have always been close, but he (along with all of his brothers) hid so much from me. I knew them, but also I did not. 

 

But I am not wrong in remembering much of our closeness. Of how much Declyn impresses me and finds ways to connect and have fun with me. 

 

So this morning, in celebration of Declyn on his birthday, I roller skated and rocked out to the entire soundtrack for The Greatest Showman. Because that is a memory of our closeness.

 

Declyn and I love to sing our hearts out, loud and proud, proper pitch and right words be darned! When we are in a car together we are unstoppable! From blocks away you will hear us coming (and though you are not likely to say "what lovely singing voices" you hopefully will think "what passion and joy"). 

 

When Declyn's brother bought him The Greatest Showman soundtrack, after having taken us to see the movie in theaters, it was an all out oh man we love these feelings rock out fest. For months! We were almost addicted! 

 

I didn't think about it then, but today, as I rock and rolled, I recognized why so much of the music would hit hard for my youngest son. The lyrics, the dreams, the "this is me" declaration, these and more are deeply Declyn. 

 

So today, I'm holding him this way. 

 

Holding him up, remembering and reliving and feeling, while hoping he will feel my love. A love I am pushing out into the world with intense rocking out energy. Perhaps his hyper empathy will help him feel it: as far as Montreal, Quebec is from Fallbrook, California, I wouldn't put it past him. He feels things. 

 

And when I hold him this way, I feel them too. 

 

Happy twenty-third birthday to my darling Declyn!

I love you!!

 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)

 

If you want to rock out with me and Declyn, here's one of our favourites: 

 

 

Autism Answer: The Rash (or: Sensory Issues and Behaviors)

 

My brother at bowling, his face is red from a reaction to a snack

 

Randomly, and with no reason I can confidently get behind, I have patches of an incredibly itchy rash calling attention to themselves in a variety of places on my body. 

 

Aside from the part where I am (not very actively) attempting to identify the reason behind the rash, there is something else I am doing. 

 

Paying attention. Noticing how I feel and how it is affecting me. 

 

I love these opportunities. When my body hurts or itches; when my face calls attention to itself with blemishes, bruises, or welts; when I hurt or itch and it is calling attention to itself with blemishes, bruises, or welts - I like to notice how it influences my behavior and the behavior of folks around me. 

 

This rash, for example, feels sooooooooooo goooooooooood to scratch! I've had mosquito bites that feel good to scratch but this is something special! However, I am aware that it is generally a bad idea to scratch a rash, so I am trying to avoid thinking about it. I'm picking clothes specifically with the intention of not tickling it into awareness. I'm also choosing clothes meant to keep it from being seen. It isn't pretty, but more than that I don't want people consistently asking me about it or being concerned. 

 

There are more things I notice, but the point is my focus is on noticing. I try to take advantage of these opportunities to remember we are all living inside brains and bodies that behave in different ways, and we are all making choices that grow out of those different brains and bodies. 

 

It is a particularly helpful reminder for when my brother - who is unable to speak clearly - is doing seemingly odd things with his body: prodding the underside of his nose, smacking his thigh, rocking his head. I admit, when I was young and my mom would wonder, "Why is he doing that?" my thought would be, "Um, because he's weird." And, honestly, between you and me, I actually thought that was the answer. 

 

Luckily, my mom isn't so easily side tracked. She really wondered because, as I now understand, there is a reason and it can be helpful to know what that reason is. Following these clues doesn't always lead to knowing how to stop the behavior, how to fix the numbness or itch or pain, but it can. And it can lead to understanding it. And the attitude of knowing there is a reason leads to seeing the behavior differently; usually with less annoyance and more understanding. 

 

I won't fool myself into thinking now that I've had this rash I know what it's like to live in a body that has sensory sensitivities or a noticeable rash, I'm pretty sure mine will be temporary. Hence, I can take advantage of this opportunity from that privileged place. I am grateful to have these opportunities. 

 

I don't prefer pain or itching or attracting attention with bruises or blemishes, I don't wish I could keep them, but I do like attempting to understand how different my choices and beliefs would be if I did always or often have those things. 

 

Funnily: part of the reason I started to love the opportunity to notice and imagine is I prefer it over trying to figure things out or fix them. I am lazy that way. I'd rather have a rash or a pain and notice my behavior, assume the problem with solve itself, rather than focusing on figuring it out or fixing it. I like letting things happen and finding a way to be okay with them. That's easier for me. (It is not better, just easier. I have waited to the point of danger before.) This is something that, maybe, grew out of me spending this first half of my life in a brain and body that are fairly plain? Fairly middle of the road? This type of laziness probably grew out of me living in a body that, so far, has almost always figured itself out. 

 

I like that. 

 

I look forward to learning how to like it when my body changes and I do have to figure more things out. Hopefully all this noticing will help me have empathy (not sympathy) for myself.

 

Now, if you'll excuse me, I'm going to notice myself sneaking off into another room where no one will witness me scratching this rash and it will feel sooooooooo goooooooood... 

 

Hugs, smiles, and love!!!

Autism Answers with Tsara Shelton (Facebook)

Autism Answer: Fix My Child

 

 

When parents want to fix their child, or try to find a professional who can fix their child, they do not really mean they want someone to fix their child. To mend or repair them.

 

They mean they want things to be less hard for themselves and their child. They mean they want people to stop staring and judging them for behaviors or appearances. They mean they want to know what to do when they see their child hurting, screaming, behaving strangely. They mean they want to know what to do when traditional parenting tips, comments, and expectations seem unreachable or ridiculous.

 

That's not to say they don't want to help their child solve problems brought on by disability or dysfunction. They do. And they may say they want to fix their child.

 

I think they mean they want a future for themselves and their child that seems healthy, happy, successful, possible. They mean they want to know what that could look like and what to do to help it happen. 

 

They mean they want to see their child without the interference of needing to fit that child into expectations that were built before the child was born. They want to see who their child is and who they can be, know they can help them overcome the hard stuff and find what works for them, know the world will have space for them to grow and carve out a life that suites them. 

 

They mean they want to know what to do to make all of this happen and to not be too lost and overwhelmed and beaten up along the way. 

 

That, I think, is what they mean when they say they want someone to fix their child. I don't think they are trying to call their child broken, exactly. I think they want to help them be the best version of themselves with the most amount of confidence and the greatest opportunities for independence or growth. And in many cases that means finding uncommon answers that ask for more than we're used to asking for. Answers that bring us to a place where we reevaluate so much we once took for granted. 

When someone says they want to fix their child, I think it is because they want to reconstruct, renovate, and overhaul their situation, their child's situation, and reactions to them and their situation.

 

Whether or not we have children of our own at the moment, we can help make raising children easier on others. We can reconstruct, renovate, and overhaul the way we react and the expectations we have when spending time in public spaces. 

We can fix the feeling of needing to fix things.

 

Hugs, smiles, and love!!

Autism Answers with Tsara Shelton (Facebook)

 

 

NOTE: Those of you raising or helping raise children, those of you hoping to have a little help knowing what to do, please visit the All Brains Grow website for access to that help. It is a beautiful place with beautiful ideas!