Tuesday, April 6, 2021

Autism Answer: Pinwheels and Prevention (Child Abuse Prevention Month)


Tattered colorful toy wheel with statue of children behind it.

When I think of a pinwheel (which, I admit, I rarely do) it's not so much a feeling of childhood innocence I get but, rather, the sweet simplicity and reliance on an outside force to move it - like a child. I think, because pinwheels are often used as a prop in storytelling to denote childhood innocence specifically when that innocence is going to be manipulated or completely mutilated, I have come to see them more as a warning about childhood innocence.

April is Child Abuse Prevention Month. It is also Sexual Assault Awareness and Prevention Month as well as Autism Acceptance Month. [A list of awareness dates can be found HERE] In my life, these have played an important role and I find it simply neat that they choose to be together in April, when my mom also has a birthday. She too has played an important role in my life and is the reason child abuse prevention, sexual assault prevention, and autism acceptance are major players in my world.

My mom is an unusual mom. Not surprising, she is an unusual woman and they make unusual moms. She herself struggled with a not-so-typical brain back in the days when nobody was talking openly or thoughtfully about autism or synesthesia or schizophrenia or any of the other variety of diagnosis professionals have flirted with for mom. Also, she was a “strange” child at a time when smacking kids around was almost expected, and unusually harsh abuse was kept quiet. And sexual abuse? Well, as my grandma said when mom told her I had been sexually abused by my step dad, “These things don't have to end a marriage, I can pay for her to go to boarding school.” Sort of explains why grandma and grandpa stayed together till the day he died and mom lived away from home from the age of fifteen.

What on earth does my mom growing up in an abusive environment with an autistic brain have to do with pinwheels? I myself had no idea until just this moment.

Pinwheels for Prevention was started in 2008 by Prevent Child Abuse America. The idea is to shift our thinking and actions around child abuse prevention. Rather than publish and post pictures of abused children with copy that begs us to care, which we do, overwhelming us to the point of being unable to think of good ideas that might make change, Pinwheels for Prevention asks us to focus on our community and any actions we can take to prevent abuse before it happens.

This brings me back to my mom.

My mom cared so much about becoming a mom and doing it with fairness and love. I think it's in her soul, but growing up in a home that treated her and her siblings in abusive and unfair ways had her hiding in a cubbyhole making clear and specific plans to be better than that. My mom was able to bear two live children, me and my sister, and one son who didn't make it. Then for health reasons she had to have a hysterectomy at the young age of twenty-three. And that is when she began to adopt and otherwise open our home to others. Children from homes of abuse, children with disabilities and dysfunctions, children in need of fairness and love. Fairness and love that was not offered in their homes or in their communities. These people became our family.

My mom wasn't able to prevent the abuse that had happened before my adopted siblings and temporary friends stayed with us, but she was able to help everyone understand how these things happen, what to do to heal ourselves, and – importantly – how to break the cycle. For some of us (like me and my siblings) this is not new news, that there is a cycle of abuse and that we must take action to break it. For my mom, this was horrible wonderful news. Horrible, because she had to contend with the mistakes she herself had made before seeing the cycle, and wonderful because something could be done and she would do it.

Perhaps the hardest most wonderful time in our lives so far was during those years of hard lessons, introspection, walking away without knowing where to go, seeing my mom make it all up out of thin air, necessity, and creativity.

My mom was planting pinwheels for prevention. She was focusing on her vision where all children grow up surrounded by belief in them, raising the bar, fairness, love, and support. For my brothers who were on the autism spectrum, this was easy for my mom at home but impossible in the community. Schools, neighbors, grocery store shoppers, parents at the park; everyone in the world treated mom and my siblings like problems, dangers, or people to pity. This, my mom and so many other special needs parents have said, is the hardest part of raising children who are disabled or cognitively challenged. So my mom took us out into the world, often, but always carefully and cleverly. She knew that the world would not change if we hid away, and she knew we would not become independent happy people if we hid away, and so her pinwheels were us and the attitude she practiced. “We stretch people,” she likes to say, it helps her take the time to explain and be patient with others.

Mom's diligence and consistence with me and my siblings worked wonders. We have all grown in ways professionals and statistics argue against, and we are happy.

Around the globe my mom plants pinwheels. She works and speaks and writes and performs, always with a meaningful message and specific actions to be taken that include and care about everyone; but especially children. Especially children with extra or special needs. 

Children are like pinwheels in a way. They are reliant on outside forces to spin them and unable to choose which outside forces and in which way. Unlike pinwheels, though, children are alive. They matter more. We have so much power with children; they need us to care about their reliance on us.   

The pinwheel is a symbol. And I think it is a good one. Planting pinwheels can remind us of our role in the lives of children; whether we have our own or not. 

We don't all have to be extreme like my mom to plant pinwheels, but we can all plant pinwheels. We can focus on a vision of the world where all children grow up surrounded by belief in them, raising the bar, fairness, love, and support. And we can make shifts with that in mind. We can consider our attitude in the grocery store when a parent is struggling with their child, reach out to an overwhelmed mom or dad we know and do something to help: make a meal, watch children for them while they nap, simply tell them we see them and point out something great you noticed they did. Notice great things they do. It is not hyperbole to say that these shifts can change the course of a life, can actually help an overwhelmed parent not become an abusive one. And where abuse exists and does happen, being a safe space rather than a closed off judgmental one can mean a child reaches out. These are pinwheels we can plant.

Also, we can plant pinwheels. Perhaps get together with a child in your life and make them out of materials you have at home. Get creative, plant pinwheels, create connections.

Or, adopt a bunch of kids and be amazing and teach the world to do the same like my mom does.

Whichever you prefer. 


Hugs, smiles, and love!!

Tuesday, March 30, 2021

Book Review: "Of Women and Salt" reviewed again but differently - Because One Thing is also Several Things

Today is publication day for Of Women and Salt by Gabriela Garcia! 

I invite you to read my review of this book on Disabled-World. I decided to write a separate review for SexualDiversity.org - a site highlighting news and stories related to LGBTQ love and sexuality as well as other underrepresented or commonly misunderstood relationships - because I want to highlight the theme of the book that struck me as most relevant for those of us creating romantic relationships while contending with the romantic relationships that came before us.


Of Women and Salt is an expertly weaved tale starring five generations of Cuban women. All of these women are connected either through family or happenstance, affecting each other's lives regardless of distance in time and place. And all of these women are both extraordinary and ordinary; like so many women we know.

The mothers in Of Women and Salt are all living in places and times where building a foundation of stability is darn near impossible. Revolutions rage around and inside them, husbands rage around and inside them, and the threat of ICE (U.S. Immigration and Customs Enforcement) rages around and inside them. These mothers find ways within the chaos to bring safety and stability to the lives of their daughters and, in so doing, build their own unstable stories and frameworks. It is beautiful and human and real and raw.

The daughters in Of Women and Salt (of which some are also mothers) struggle to understand themselves and their pasts. Because their mothers are strong and unwilling to yield in areas they believe best for their daughters, they make strong barricades between them. Again, it is beautiful and human and real and raw.

As the daughter of a strong woman myself, one who never built barricades but was perhaps unnecessarily open and honest in order not to do so, I felt my own connection to these women grow deep. As they (mothers and daughters) made choices and took actions in love, choosing to hold onto or, in dark and dangerous ways, get rid of husbands, they were teaching each other what love is, what we do and don't allow in our relationships, who we become in order to make it all work. And each woman chooses to see what they are being shown in ways that are both unique to them and built by their relationships to each other.

I watched my mother struggle with relationships. When my step-dad molested me and she left him, becoming a single mom with six kids – four of whom were small adopted boys with various disabilities and challenges – my mom worked with passion and vulnerability to learn what the “cycle of abuse” is and to take any action to break it. Mom rarely dated (six kids doesn't leave a lot of room for romantic love) but when she did she was careful. Whether dating men or women she watched them closely for any signs of prejudice or cruelty. And because we all have some prejudice and cruelty, she always had to let them go. Not trusting herself to choose well.

My sister and I learned different things from watching this play out before us, but we both learned from it. Lucky for us we are all close and supportive and believe in consistent growth so the times we found ourselves needing to make changes we were not alone. We had help. We had each other.

My mom, though, did not. Like many of the women in the book my mom had to do it all alone. She made choices that were near impossible to build the support and strong foundation we – my siblings and I – were able to take for granted.

While reading Of Women and Salt I was moved by how well the author shows these relationships between women, the way we are influencing each other and how we are both unable to insist on the way our influence is received and how we are responsible for being careful with it.

There are moments in this book that break your heart; there are moments that reach out and acknowledge you; there are moments that give you power while simultaneously reminding you how little you have.

Ultimately, though, for me the novel was a moment of feeling connected to women around the world and finding comfort in that.

We are building society together, fathers, mothers, daughters, sons. We are connected, regardless of time and place. And though we can't be certain of how our influence will play out we can be careful. Be inclusive, open, and willing to make changes.

Like my mom, we can work with passion and vulnerability to learn the places we are perpetuating cycles of abuse (in our homes and communities) and take actions to break them.

Like the women in Of Women and Salt, we are all bound to environments that we can only partly create. And like the women in the book, who are expertly crafted and imagined, we are influenced by our environments.

These women will influence you.

Of Women and Salt by Gabriela Garcia
Publish Date: March 30, 2021 (today!)

Pre-Order via Amazon: Of Women and Salt


Image: me reading "Of Women and Salt" with the novel cover fully in view.

Thursday, March 25, 2021

Book Review: Of Women and Salt by Gabriela Garcia


Of Women and Salt by Gabriela Garcia
Publish date - March 30th  
Number of Pages - 204
Genre - Literary Fiction
Pre-order via Amazon here: Of Women and Salt 
"We are Force. We are more than we think we are." These words, written in the margins of a book by characters in the novel, are powerfully used and underscore the feeling I was left with after closing the final page of this debut novel.

Of Women and Salt by Gabriela Garcia invites readers into the lives of several extraordinary/ordinary women who are separated by time, place, politics, and so many barricades built within themselves. The writing style is both simple and sophisticated; clear and poetic. I love when a novel shows me to myself while also revealing motives and experiences and thoughts entirely unlike my own, stirring empathy and understanding in all cases. This novel did that for me. 

While exploring the personal and political lives of these Cuban mothers and daughters, traveling with them as they made choices or choices were made for them, and considering the cultures we create and how we are both powerful and powerless in the making of our world, I easily recognized myself and other strong women in my family.  

There are some pretty dark and uncomfortable experiences that are referred to in this story - molestation, domestic abuse, addiction, to name a few - but the author does a powerful job of revealing just enough. Inviting us into the trauma without asking us to relive it. In the case of the molestation, for example, it is quite similar to the molestation I myself experienced at a similar age. I also chose to believe and feel similar things, and act out in similar ways, and put myself down with almost the exact same language as Jeanette - one of the central women in the book. Yet I did not find it triggering and, instead, felt understood and a little bit absolved. I cannot say it will be the same for others, but I do hope so.

The use of time is brilliantly done. Because the theme, as I understood it, was how the actions we take - particularly as mothers - and ways in which we choose to hide, share, embrace, deny, explain, or forget those actions, weave themselves into the lives and environments of others - particularly our children and their children. Near and far away. In our present and long into the future. As we skip time and place in the chapters of this book, from Mexico to Miami, Cuba to Texas; from addiction in 2018 to cigar rolling in 1866; from fearing the nearby revolution will murder your family at home to swimming dangerous waters - family-less and alone - to try to make another place your home, we bring with us the memories and acts of previous chapters and are as affected by them as the characters we're reading about are. Though we are given the gift of knowing it.

This knowing, and again I love this, does not exactly give us answers. It is complex and unknowable how our actions will affect our people. But they do affect them. In my mind, this is an argument for being your most authentic, fearless, thoughtful self. For being open to evolving and growing consistently more authentic, fearless, and thoughtful. For being someone who is confident that when their actions influence people - and they will - those actions were ones you can explain with honesty. 

"We are force. We are more than we think we are."  

Particularly, in the case of this book, if we are mothers and daughters.
This is a lovely book. I recommend it to any reader. Particularly, mothers and daughters. 

Hugs, smiles, and love!

Friday, March 12, 2021

Autism Answer: I Haven't Met You Yet (A letter to my granddaughter)


                                                                                                              March 11, 2021
Dear Aislinn, 
Tomorrow you will be one week old and I still haven't met you. 
Oh, you spent some time here with me and Ian before you were born. I had the pleasure of singing to you, of feeling you shift around in mommy's womb. You were here with your dad, mom, and big sister, Clarke. My heart - my heart! - when I remember your sweet sister here calling out, "Gweema!" and letting me wrap grateful grandma arms around her itty bitty body. 
I love you, Aislinn. I just haven't met you yet. 
You've been born into a world swirling thickly with ideas, desires, needs, and beliefs that splash and clash and dance, diminish and expand, hurt and heal. (I don't only mean us grown-ups tend to argue and debate, I'm also referring to the balance of nature itself which is brilliant, bold, and assertive.)
Your cousins and sister were born into this same world, too. We all were. But you, Aislinn, arrived at a time when this swirling world is keeping me away. There are travel restrictions and a virus whose spread we're trying to limit. Unlike any time in my life, Aislinn, the world is working on the same problem at the same time. There are a surprising number of sides to this story little one, and I am just one grandma with a few thoughts, no big answers or fighting words, but my relationship with you begins in this moment no matter how few or big my thoughts and words are.
I love your cousins, I love your sister, and I love you. You are all singular and extraordinary. I crave your spirits and care more than feels manageable about your hearts and souls. All of you.
You are all special to me. But you, Aislinn, are newly special. A love of my life that I cannot hold in my hungry arms. They ache, Aislinn, with the lack of you. I held your sister, not long ago, for hours and hours and hours. My arms ached with her weight, with my desire to meet her needs as she slept ever-so-lightly. Do you sleep ever-so-lightly, sweet snuggle bug? My arms do not know. My arms ache to know.
So you and I are starting off learning each other in this new way. 
I do get to see you. Pictures, videos, and video chatting are not substitutes for the real thing but they are real. I can sing to you and watch you with your sister. Watch you with your mom and dad. Hear your little voice as you cry out. (Although, I have not yet heard your little voice. Do you have a loud cry? Do you demand attention from the world or simply call out to those close to you? I don't know these things. I want to know these things.) 
I love you too much not to learn this with you. This way of getting to know each other. And, do you know little pumpkin pie, that we are not alone? There are millions of others unable to gather or snuggle or show up. So many others who cannot lean on their usual ways to connect with each other and celebrate life. So, like us, they are figuring it out. 
I hope that we are all stretched to be better because of this. With you being born I have so many reasons to care about using this moment well. Not only because you and your sister and cousins are in this world and I want it to be a place where we use moments well, but also because I am trying to use this moment well and I'm noticing a few things.
Surprisingly, I feel myself resisting. I want to hold you and sing to you, I wanted to be there with you and your sister from the beginning, be the helper-self I know me to be for your mom and dad, so I catch myself resisting the joy of this new way. This being apart way. Partly because this new way is temporary (I will hold you and be with you, Aislinn, I just don't know when) but mostly because I know how much I love the other way and I don't want to lose that. Silly grandma! I can love both ways. And this is the way we have right now. 
Also, the world is sort of smaller but also sort of bigger. Because we are unable to travel and visit much, we are practicing new ways of being together. And if we practice being honest and authentic and vulnerable in these new ways, we can grow in unexpected directions. I'm sorry to tell you little love bug, but even before the travel and visits were limited people struggled to connect in meaningful ways. This is something I can't wait to discuss with you as you grow, but for now just know that we - as a world, but also you and me - have been almost forced to contend with this. To explore where we've been lacking and make changes. 
So, sweet snuggle bug, we are building something new together. Well, new to me I guess. You are learning this from the beginning. 
More reason for me to do it well. 
Aislinn, you matter so much to me. You and your sweet cheeks and full head of hair have my heart. Yet I am no one to you; I know that. But I will build something with you. 
You are singular and extraordinary to me. 
We will navigate this new relationship together and build something unexpected and unrivaled.
I love you, Aislinn.
I just haven't met you yet. 
P.S. "Haven't Met You Yet" is a song by Michael Buble, a singer your Uncle Declyn likes. I have been singing that hook in my head since you were born and, this is something I can tell you about me, I like that it has an upbeat tempo. It's a fun song. I like using it to remind myself to be happy and remember that I will meet you, it just hasn't happened yet. I love using song lyrics to feel things. Oh, and I can be annoyingly positive sometimes (ask your dad, he's comfortable saying I'm annoying sometimes. tee hee!) but mostly I'm just normal positive, not annoying. Positive.
Hugs, smiles, and love!!!
Photo Credit: Obviously, not me. I haven't met her yet! This pic was taken by baby's mom, Aly. Beautiful!


Monday, March 1, 2021

Autism Answer: Everybody Eats


My boys, eating apples.

I am not a foodie. I'm not much interested in food, particularity not how food tastes, or how it's presented. I've never had much interest in the history of a dish. Because of this I have spent a lot of years foolishly thinking of myself as someone who doesn't care about, and has no feelings surrounding, food.

But, no no no no no. that is not true at all.

Recently my mom and I were invited to write for Eat, Darling, Eat, a website dedicated to stories about food, accompanied with recipes. More specifically, a website that acts as an international buffet of stories wherein mothers, grandmothers, daughters, sisters, and aunts experience deep connections around shared meals and moments.

Actually, my mom was invited to write a story and she kinda fed them the idea of including a story from me - a mother and daughter story site with stories from a mother and daughter. Admittedly, it is a delicious idea.

But I was hesitant. I mean, I don't care about food, right? Mom tried to teach me to like soup, a brilliant brew that can be simultaneously used for leftovers, nutrition, and soul food. Unlike my mom and sister, I just never much liked it. Mom tried to teach me to close my eyes and imagine tastes on my tongue, swirl them around to delight in the flavors belonging only to me before excitedly gathering the real things and mixing up a meal that can be shared. She tried to teach me, she exampled it beautifully, but I preferred to get a plate of cheese and crackers while crunching on celery.

Yet, I do care. About food, and about stories. Particularly stories that center around the women in my family. So, I agreed.

Funnily enough, at first I was a little annoyed my mom had already written her story (a spectacularly written memory of my mom and her sister attempting to please my grandma by clearing a plate of her famously disliked Tomato Aspic) and my job would now be to write something that tied into her story, that complemented it in flavor and tone. Mom lead me into a situation where I would have to swirl flavors around for myself in order to serve up a story to share with everyone. Well done, mom!

So I sat down to write a story about food and my family. And, well, there are so many stories I could write! I mean, holy moly! I may not be a foodie but, surprise surprise, food has played a huge role in my life. In my family's life.

I have major memories of mom baking strawberry-rhubarb pie while smoking cigarettes and sipping coffee. My little sister and I would watch her move gracefully in the kitchen, baking from scratch and singing to us. She'd roll imagined flavors around in her mouth and know precisely what to add to the pie. And though the pie wasn't exactly the same each time, each time it was the best pie.

A few years later, after mom had adopted all four of my brothers and terms like "autism" and "fetal alcohol syndrome" and "learning disabled" became commonplace in our home, if not easily understood, I learned to love the care and commitment behind the nutrition in every single bite and ingredient of our meals. More than that, I learned to ask where our food came from and how it was grown. Those years mom almost never left the kitchen, feeding six kids on a macrobiotic diet - a diet that insists every ingredient be close to its natural state and locally grown - meant a lot of chopping, pounding, mixing, steaming; everything from scratch and nothing too easy. Also, my brothers all struggled with various eating disorders or food reactions so even if mom wasn't cooking she was sitting with them, encouraging and insisting they get nutrition in their bodies. She was paying attention to them in order to deduce who was reacting in what way to which food, and working to find ways to get the necessary nutrients in them without pushing their little bodies too hard. It was during those years that I started to notice what my friends were eating. Their school lunches had me asking questions about their cultures and religions. Their food reactions or allergies. After school some of my peers would walk to a nearby convenience for junk snacks. Interesting, I'd think, other families are allowed to eat junk. Also, they have spending money.

And a few years later, after my mom had gotten legal custody of two girls, my newest sisters, now a home with one single mom, four teen girls and four elementary school aged boys, the kitchen became a place for chores and food bank foods infused with healthy ingredients. Mom still did most of the cooking - one pot wonders and soups were her specialty; healthy things mixed together with spices and onions in a big ol' pot on the stove - but now we kids were expected to also cook, clean, and make school lunches. Our buddy system worked well, one teen girl would be buddied up with one little brother. We were expected to expect them to be able to learn skills which, when your brothers have various disabilities, is a valuable skill itself. Learning to believe in others regardless of appearances, while learning also to adapt for their challenges. Seriously, time in the kitchen with a buddy could be frustrating but it was always an important opportunity. (One I wish I had taken better advantage of as a big sister. Often I did my best to get out of it. However, my mom is not a fool. Often she also said, "Oh, you have plans? Take your brother!") Those days I noticed the importance of how we work together in the kitchen, and what it did for us as a family. I payed attention, also, to how other families did or didn't work together, and how that appeared to play out for the family.

Much later, as I became a mom myself, I noticed how little I seemed to learn from all of this. My mom was an everyone sits together at the table kind of mom. Not me. I liked me and my boys to eat together, but often we did so in front of a movie. Or in a mess on the floor while playing with toys. Also, my mom made sure we ate everything on our plates before we could ask to be excused from the table. My sons, on the other hand, knew they could eat till they didn't want anymore as long as they didn't expect me to make them something else later. And nobody asked to be excused from the table because we were rarely sitting at it. And meals? I pretty much made spaghetti or cheese and crackers or sandwiches for every meal. I cared about nutrition so I read ingredients on labels and made sure all food groups were represented (my cheese and crackers always included a vegetable, so ha! Healthy!) but I rarely made food from scratch. I read directions more than recipes.

My poor mom. She taught me better than that.
Meals with a movie? Foods from a box? Leftovers on the plates? That's not how I grew up.

But I did grow up caring about food and the kitchen. And I brought that with me as a mom. I cared about how the foods were grown and what the ingredients were, and later I cared which food companies I gave my grocery money to, how they treated the environment and their employees. I cared how my sons reacted to being fed what I fed them, and I encouraged them to feed themselves when they were hungry.

As all this came flooding to mind I decided I was grateful to mom for having already written her story, helping me whittle down my ideas to something that incorporated and included hers. I mean, my goodness! For a non-foodie I have a lot of thoughts and memories about food!

When I take a moment to visit the site we wrote for, Eat, Darling, Eat, it is clear that I am not alone. Everybody eats. Everybody has memories of food and figuring it out. What we like, how we feel about it, how we move away from our mother's kitchens into our own.

I hope you'll visit the site as well for stories of recipes, memories, and moments shared by others. If you prefer to listen, there are recordings of authors reading their stories. And, perhaps, you'll submit a story of your own. If you do, please consider sharing it here with me. 
My mom's story: Tomato Aspic

I'd love to enjoy a moment in your kitchen!
Even though, you know, I'm not a foodie.

Monday, February 1, 2021

Autism Answer: My "That Reminds Me of Me" Problem.


Me, mom, and my brother, Dar, in the audience.

I love being an audience. Seriously, listening or reading or watching is my jam.
I crave hearing good stories and music; seeing art and nature. I think I would quickly wither away if I was denied these delights. 
In a way, I'm a fantastic audience member. I show up ready to like what I'm about to see or hear and my entire being works to prove why what I'm seeing or hearing is good, valuable, entertaining, and brilliant. I like the feeling I get when I let myself respond with laughter or tears, so if I'm audiencing you and you are there, you'll get feedback. I nod, lean forward, ah-ha, and rarely daydream. 
But, problematically, I also often think or say, "that reminds me of this thing I think, saw, heard, wondered... "
I crave stories and visions from outside of myself, from outside of my scope of thought and experience, in order to learn and be connected with others. In order to be moved by what I don't know. To consider beliefs I would never have conjured alone. And yet the moment I feel a familiarity or recognize myself in the story, I practically pounce on it. Rather than allow the yarn to unravel I attack it with my claws and tear it to shreds. "That reminds me of me!" and at that point I'm no longer really listening. 
I mean, clearly I'm still interested and involved. But - as my children and my love can tell you - I'm less listening and more telling.
However, there is a listening involved in my telling. I'm listening to what reminds me of me and seeking to connect it to the universe around me, and so I'm feeling my way through all the listening I've done before to piece it all together. But in the meantime, I'm not really listening to what's in front of me anymore. And, to make it worse, I'm not letting the folks around me listen either. Or, to make it even worse, I'm not allowing the person talking to continue their story and discover what they may have needed or wanted to discover along the way. I interrupt with "that reminds me of me!" 
I am trying to get better at not doing that. I'm trying to get better at letting the story play out and NOTICE what reminds me of me, FEEL the connection without having to pounce on it. 
Considering how much I love listening to what others are willing to share, and knowing how deeply I adore being shared to and with, you'd think it would be easier for me not to interrupt with "oh, and me!"
But it isn't easy. 
Especially since a little bit of "that reminds me of me" is good. When I've told a story or written a thought I love hearing that it resonated with others! That it reminded them of them! And I like being interrupted with such things as well!
I also love when folks say I made a point they'd never considered, and it gave them pause. This, I love most of all. When it happens to others and when it happens to me. And it happens when someone is a good listener. 
So I'm working on being a better audience. A better listener. 
It sounds so simple but takes work.
Or, is that just me?
*Feel free to say this reminds you of you.*

Wednesday, January 20, 2021

Autism Answer: Beautiful, I Feel Ugly Today


Most of us have had those days, right? Our hair is flat or falling in a way we don't like, our skin has pimples or unappealing hairs in awkward places or too much flaky dryness or we noticed our teeth look particularly yellow, our bodies are bigger or smaller than we like and our clothes refuse to flatter us choosing instead to rebelliously call attention to the parts we are trying not to give attention to while doing their best to be a color that looks terrible on us, even if it looked good just two days ago. 
You know what I mean? Those days when we feel like being quiet and unseen and hopefully a shower and good nights sleep and a brand new outfit will make all the difference tomorrow. (Please say you know what I mean. It's not that I hope you also have days where you feel ugly, but I do hope I'm not so awkward and self-centered and silly that I'm the only one! tee hee!)
Now, think about those days. (Those of you that have them, and if none of you do well, um, I was just kidding? Giggle!) When you feel ugly, sort of hide, put your hand on offending blemishes and hairs, avoid standing out or apologize more than usual. These are days when we aren't actually ugly, just less physically falling together than other days. And yet much of our manner changes. And when these days last, more of our manner changes. Maybe we skip out on opportunities, putting them off till we look better. 
And our self-talk is influenced by our appearance, so on days we feel ugly we tend to tell ourselves we are ugly. Even though we aren't. Even if our outward appearance is not typically attractive, we are not ugly because of it. But when we feel ugly, we can begin to think we are ugly, and - sadly - sometimes we will treat ourselves and others around us in an ugly fashion.
Having days when we feel ugly is no big deal. Hardly worth bringing up. (And yet here we are. Here I go again. I love talking about nothing like it's something! It's my superpower.) 
But if days when we feel ugly can affect our choices, movements, and self-talk in these hardly worth talking about ways, imagine what feeling ugly every day can do? How integral to our self-talk and habits and even to our kindness it can be. 
When I was a teenager I felt certain that I was an ugly person. I worked my butt off to try and prove otherwise but was lost to know who I was trying to prove it to. I had no clue what the proof could possibly be but I wanted for it. I was cruel to myself and cruel to people closest to me. I didn't know it at the time, how cruel I was being. Well I knew some of it but not all of it. Then I spent a whole lot of years trying to put myself back together. To see myself as not an ugly person. Maybe instead as a beautiful one. 
We can't force people to believe they are not ugly. We can't make them know that - regardless of physical appearances - ugly is not something you are but someone you become. However, I honestly believe we can create an environment that encourages us to believe that. 
My youngest brother asks me what I think of his appearance often. He asks if I think he's handsome, if I think he looks young, if I think he looks cool. I always answer honestly (which is: yes he's a handsome fella!) and we always end up talking about the truth that most people who are willing to be decent to us and spend thoughtful time with us look good to us. And how we should probably remember to be decent to ourselves and spend thoughtful time with ourselves in order to look good to ourselves.
And I confess, when we've had these chats he tends to shine and look particularly physically handsome at the end of them. Smiling authentically and walking with his head up, he looks good. I think partly because he's feeling good. And all we did was spend some focused thoughtful time together. 
So when I have a day where I'm feeling ugly, I remember that it is not nothing. That I should be careful and kind with myself and not become ugly. Sure, I still try to stay in the background a bit and cover my chin hairs with my hand, but I also try to do what I can (like pluck those pesky chin hairs*) and work at not to being ugly to myself about who I am and how I look.
I remind myself of how handsome my baby brother looks when he walks away feeling comfortable and confident. I try to do that too.

And if I see an opportunity to do so, I try to reach out and be beautiful to someone. Helpful or available to listen. 

So if you or a loved one has one of those days when you feel ugly, that's beautiful. It's an opportunity to notice how you are affected and know that others around you might sometimes be making choices for similar reasons, so give them a little room to have an off day. Consider the challenge faced by people who are treated poorly, abused, pitied, and bullied because they are seen as physically ugly and make darn sure not to do that to anyone. It's uncomfortable enough to feel ugly, which most of us sometimes do I think. But to pile ugly treatment onto that is unnecessary (seriously, how does that help anyone?) and creates a thick layer of mean-fog that slows us from shining our brightest.
Maybe even, on a day where you feel ugly, appreciate that you are only having a day where you feel ugly rather than months or years. And try to keep it that way.
There is so much going on in the world - like, seriously, the list is endless! Having a day where we feel ugly is not important. 
But it's not not important either.
Because we are important. 
And we can be beautiful. Everyday, even when we feel ugly. As long as we don't allow ourselves to become ugly.
(If you read this and have never had a day where you feel ugly and it ends up affecting the way you behave then please feel free to comment with your secrets! Also, if nobody knows what I'm talking about that's because I made it all up and I'm totally kidding! ;D)
Happy Wednesday, friends!!
Here's to being beautiful even when we feel ugly!
*Raising my coffee mug*
*I am aware that chin hairs are not inherently ugly. I just don't like how they look or feel on me. So distracting! I spend half my time pulling at them with my fingers. But if you have them and are rocking them, that's fantastic! My example was a personal one. Also, here is a pic of me plucking my chin hairs. Also, why do I have a picture of me plucking my chin hairs? I'm weird. 

Sunday, January 10, 2021

Autism Answer: Why We Revolt: A Patient Revolution for Careful and Kind Care - Book Review

 *I originally wrote this review for Disabled-World.com. I highly recommend visiting the site and reading the valuable and eclectic content published there! 

When I was a little girl and my mom complained about the lack of kind care she or my brothers were offered, despite my mom's excitement at collaborating and sharing ideas with experts in the field of disability, I thoughtlessly assumed my mom was expecting too much from people. I also wondered if people like my brothers could even tell when they were being treated with kind care.

I, clearly, was not good at kind care.

Over time, with my mom's insistence and persistent modelling, I became better at it. I also began to see the lack of it offered elsewhere. And once I saw it, I couldn't stop seeing it.

For those without a mother or brothers like my own, Why We Revolt: A Patient Revolution for Careful and Kind Care by Victor Montori can play the role of insistent friend that persistently models what kind care is, how we can and why we should require it for ourselves and our society.

Why We Revolt is an urgent book with a relaxed and poetic pace. It think this sets the tone for how we must revolt; with urgency that understands kind care is often relaxed and poetic. It is collaborative and creative. It is challenging and exciting. It can save lives and it does create better living.

The author, Victor Montori, MD, Msc, is a professor of medicine and a diabetes doctor at Mayo Clinic. His desire for kind care in all fields of healthcare shines through in the stories and essays throughout the book. But because diabetes is so often a lifelong disease, necessitating that care, medicating, and maintaining health become a lifestyle for diabetics, it is often through these stories that we feel the full impact if how careful and kind care can deeply affect our world.

The book is a collection of moving essays, written from personal experience within the confines of industrialized healthcare. Regardless of where you live in the world, of where you deliver or receive your care, the corruption of contemporary healthcare is affecting you. With compassion and passion, Montori shares how working within the confines has made giving careful kind care a challenge for him, personally. He exposes ways our streamlined healthcare, meant for patients like you rather than you, is disconnecting us from caring. It is hurting our ability to become holistically healthy. However, one of the things I loved about reading Why We Revolt, is Montori builds every story around a vision of – and belief in – effective and kind care.

For a book that consistently reveals and reminds us of the harm being caused in healthcare systems around the world right this moment, it is surprisingly lovely to read. Rather than display anger and provoke readers to feel hate and blame, it excites us with possibilities and envisions a different system that is built of love for humanity and honest science. This book is careful and kind itself.

Why We Revolt explains with clarity so much of what is wrong with healthcare today, putting clear words to what most of us suspect even when we can't clearly state it. Through the stories and insights, it connects us; caregivers and care receivers – reminding us to fan the flame of noticing each other in order to know how to help each other.

This book reminded me of growing up with my mother. Of how over and over she hoped for creative care when reaching out to professionals, particularly in the case of my brothers who had autism and other various cognitive challenges. How she would attempt to shed skepticism from past professional encounters and meet each new caregiver with a fresh attitude. And how over and over they would be unable or unwilling to offer themselves in a human capacity. To notice my mom and my brothers as individuals and collaborate in order to create individual protocols and regimens.

One passage in particular stood out and reminded me of how my mom decided to run her own clinic. Dr. Montori writes: “There is no natural law that commands corporations of any kind to place the interests of their stockholders and administrators first. A more natural law would state that if you meet or exceed the needs of your customers, if you respect the people you serve, if you don't lie to them or shortchange them in the quality of your offerings, and if you don't extort them, their loyal business will follow.”

My mom is an international brain changeand behaviour expert so her clients, eventually, do not need her anymore. Their loyal business manifests as word-of-mouth recommendations and invitations for her to speak, but the point is the same. Give quality, kind, careful care and your healthcare business will thrive because a healthcare business is thriving when it is offering quality, kind, careful care.

Time is not money. The depths of time are the currency for caring.” ~Victor Montori 


Why We Revolt is a book that belongs in every personal library. It can be devoured in a sitting or two, and continually referred to when the reader wants a reminder of how and why we must revolt.


Why We Revolt: A Patient Revolution for Careful and Kind Care (2nd Edition) on Amazon.com: Why We Revolt

Monday, January 4, 2021

Autism Answer: Envision Clearly and Keep Moving in the New Year


"The universe constantly and obediently answers to our conceptions; whether we travel fast or slow, the track is laid for us. Let us spend our lives in conceiving then." ~Henry David Thoreau 

I don't know about you, but for me and my family 2020 was a strange year. Actually, for my friends as well. And for my friend's friends. Hmmmm... maybe it's something in the air. ;D 

In all sincerity, though, I send my love to everyone. Many of us have lost loved ones in this pandemic, in various ways. Losing someone is always emotional. Whether that loss was our choice or not, whether it was a loss we would do anything to undo or one we courageously insisted on, whether it was letting go so someone could become more of themselves or pushing away to become more of ourselves, it is always emotional. 

This has been a year of change for almost all of us. Work, school, relationships, grocery shopping - everything is done differently now. Some things drastically so, some things only slightly. And we are required to find balance, shift our feet, make choices and form opinions about things we've barely considered of note in the past. 

I know that my family has worked hard at using this time well. At finding this forced-upon-us moment at our doorsteps and trying our darnedest to turn it into an opportunity to strengthen what needed strengthening and let go of what needed letting go of and pushing toward almost entirely new visions of and for ourselves. 

I also know that for all of us, every single one of us, it has been undeniably emotional while being simultaneously scary and exhilarating. Everyone in my family, every one of my friends, we are all being pushed to make changes and we are choosing to make the changes we were often either too scared or satisfied to make. 

 It's wild, really. Practically everyone I care about is in a state of almost. Precariously perched at the entrance of entirely different styles of living, staring into an unfinished picture of what they are hoping to accomplish; ingredients and ideas and hopes are floating before us in an abyss of possibilities and while we reach out for help and support from each other we are also on our own. The shifts of who leans on who and how we all lean on each other is leaving us a little bit dizzy. Where we are now would have been incomprehensible only one year ago, and yet here we are. Entirely real and in a state of almost. * 

*I want badly to get specific here, to share with you all the ways in which my family is shifting. Moving to new places, living with new people, changing careers or looking for work after being in a dream job that felt permanent, losing homes and leaving people behind. I want badly to tell you the hopes we hold in these shifts. New found confidence and happiness, independence for those who only dipped a toe in, discovering what love is and all it might have to offer. But, as I mentioned, we are all in a state of almost. And so, for now, I hope you'll accept my vagueness as being purposely inclusive. Because, it is. The entire planet feels on the brink of almost and we are scrambling to make the best of it. We hope to build new systems where old ones were harmful. And in most homes there are personal hopes at the surface that were being stifled or avoided. And around the world people - forced as we are to do things differently - are seeing things in new light and making big changes. So, I think, you get what I'm saying even when I'm not being specific.* 

So my resolution this year is to envision clearly and keep moving. To not try only for the easy life but for the best one, the one that cares about me, my world, and the people in it. I hope to help my loved ones do the same. I'm going to do my best to find balance regarding the timeline - no need to push forward so fast we push past possibilities. But let's not move at such a leisurely pace we lose this momentum. Let's not risk losing sight of the things we want to change, the things we were settling for and unhappy about - or simply the opportunities we were avoiding - before this pandemic began. 

Confession: This is more work and takes longer than I want to admit. I love to talk about how everything is awesome and when we tell ourselves our stories with happiness and joy we will feel that happiness and joy. I think that's true. But I also think it helps to hold up a big hefty book once in a while to remind ourselves that big stories are long. 

Big stories, colored-in with little stories of varying shades, when crafted carefully are truly one of the most sublime things made by humanity. 

So with that in mind: Envision clearly and keep moving. Envision with kindness and intention and keep moving toward that vision. 

That's what I resolve to do this year. 
And for however long it takes. 
 Hugs, smiles, and love!!!!