Saturday, December 31, 2022

 Autism Answer: Be Brave

My son, Declyn, being a superhero

"You will either step forward into growth, or you will step backward into safety." ~Abraham Maslow

Be brave.

The idea has tantalized and even tortured me for nearly fifty years. It seems so simple, so clear, so obvious: step up and do what you think is right even when it frightens you. Done.

It seems clear and obvious, right? But only when I'm not feeling frightened and uncertain.

Fear and uncertainty muddy the waters and seeing clearly is not an option. In fact, when I am afraid, seeing anything at all is a challenge. I shrink inside myself and leave my body to stand there taking the brunt of things. My eyes are clouded, my head is dulled, my ears fill with cotton, and from far away in the dark I watch the unfolding of things through the murky vision of fear.

This type of extreme fear, I admit, does not happen often. But a more insidious version, an easier to justify version, does.

I noticed it when I was younger and my mom asked me to take my brothers places. I would want my brothers to have big wonderful lives, be welcomed in the world regardless of their uncommon behaviors, but I did not want to be seen failing at helping them learn or knowing what should be accepted. I would take them places when my mom asked, but I would spend the entire outing afraid and behaving for the viewers rather than for the proper growth of my brothers. And I never took them out if mom didn't ask. Not because I didn't want them to have opportunities provided by the outings, but because I was afraid of doing it wrong. No, of being seen doing it wrong.

So I would justify my fear in cruel ways. I'd think of my mom as crazy for expecting the world to be okay with our weirdo family, and I would think of myself as stupid and weak for not knowing what to do, and I would think of one day having kids of my own who I would parent so wonderfully the would not be as disruptive as my brothers. <--- Boy, was I wrong! My sons were wild and disruptive and it was mainly because of how I parented them.

Also, I notice the insidious fear when I want something to happen, or I have an idea I think is valuable and worth sharing, or I have a nudge I want to give my children - the water is muddied and I am unsure of myself. Can I push for what I want to happen? Are my ideas childish and completely unoriginal? Are my observations or suggestions even at all right for my children and their children? And so, because I am afraid, I might do or say nothing.

But this doesn't always feel like fear and, instead, can feel like being thoughtful or polite.

Well, sort of. The truth is I've grown to notice the difference. I can mostly tell when I am avoiding something out of fear vs when I'm not doing or saying something because it is maybe not good timing or simply not necessary to say or do.

Not only have I grown to notice the difference, but over the last few years I've overcome the fear more and more. I've begun to practice saying and doing things despite the fear. It's something that sort of happened for me even more because of the pandemic. I (along with so many others) was reminded that life could lock me down at any time and by being brave I would more likely be happy with the life I'm locked in.

It's been almost easy! And even though I am sometimes met with resistance, or I am sometimes left learning my ideas are silly or my understanding of a situation is wrong or what I am wanting to make happen isn't going to work, I am also mostly seeing my life respond by being more mine. More something I am an active player in creating and designing.

One tiny example: I want to work creatively with my love. At the moment we sit side by side working, and sometimes we work together, but I really love the idea of often working and creating together. I was afraid to say so because I didn't want to be a burden, or to put him in the position of saying he didn't want to champion my work, or something like that. Silly, I know. But fear is often silly. Anyway, I stepped through the fog of fear and said what I hoped for and, funnily enough, he was thinking of something similar. So, rather than wonder what would happen, now we'll see what will happen.

“You can’t walk gingerly. You have to step in and say I am gong to love you robustly, and we are going to get to the end of this!” ~Dr. Lynette Louise ("The Brain Broad")

My mom loves us robustly. 

She took our family on outings and taught all of us how to be brave, how to ask for the world to accept who we are while teaching us to find ways to fit properly into the world. It is not cool to say, "Shut up and accept everything," and it is not cool to say, "We are strange and it frightens people so let's stay home," and instead, as with all things, there was a dance of learning, shifting, changing, trying, doing, doing, doing, that had to be done. For everyone everywhere we went. "We stretch people," mom would tell herself when she needed to remember it was worth the work of doing it well.

So, this new year I am going to stretch myself. I am going to love my life robustly. I am going to be brave. I am going to continue saying what I hope for, writing what I'm afraid isn't good, telling my thoughts to my sons even if maybe I've got it all wrong.

Mostly, though, I will be brave about the way I want to live.

Last year I came up with a new year idea that was similar. I gave myself a "Yes Week" every month wherein I would use the month to think about the stuff that was rolling around in my gut as issues perhaps worth speaking up about, and then I would use the last week to speak up about them. As expected, it worked! And as expected, it was not done in such an organized fashion, but it became a healthy habit.

Hence, the idea to be brave is not so scary to me this year. I mean, yes, I'm raising the bar for myself. I intend to be brave in more moments and with more things, but what would have scared the sh*t out of me ten years ago is not so scary to me now.

When I was a little girl I had a memorable, horrible, most painfully frightening nightmare: My mom was being attacked in our home by a cluster of evil clowns while I hid under a table. It stuck with me and was an exact example of what frightens me most about myself: That I am a coward. That I am not brave. That I will hide under a table because I am so afraid of being the one that is seen, the one that is hurt, the one who is the victim, that I will not move toward the scary chaos of clowns to help even the person I love most.

A version of this fear still visits me in nightmares but the better I get at stepping forward into growth, rather than stepping backward into safety, the less the nightmares affect me.

Looking over all my years I can see the influence I have on myself; the impressive impact these small promises I make to me can have. A few of my ideas fizzled (like the one where I vowed to buy myself one pair of pants a month so my pants wouldn't all have holes in them. I think I bought two pairs? But the fizzle wasn't me giving up, it was me realizing I didn't want what I thought I wanted.) but most of them have simply become a part of me. Nothing dramatic in the moment, just small trajectory shifts. Shifts that are dramatic in the long run.

So, I will be brave.

I will say the thing I want and I will share the idea I think is of value and I will nudge the child even if I might be wrong and I will write the story that might not be good.

I will not always be right or wise.

But I will be brave.

I will be brave and see if I like the influence I have on me and our lives.

Happy New Year to you, my wonderful friends!!!
I hope it brings you beautiful things!

Hugs, smiles, and love!

Saturday, December 24, 2022

Autism Answer: Christmas Traditions


Our tree


My eyes were large and bright, hope poured in like a tidal wave. "You did, mommy? You did get me a present?"

"Of course," mom replied, appalled that I would forget, heartbroken that I would believe she hadn't.

"What did you get me?" I asked, looking up at her with a grateful, excited, expectant expression on my small face.

"I got you the...." she stopped short. "She" had worked her butt off to afford a dollhouse I'd wanted that she could not afford, but "Santa" had given it to me. The purchase of that gift, along with Santa's thoughtful stocking stuffers, had left her broke. There was not a penny for another gift.

So, she had to let me believe she had gotten me nothing. But not after first flittering my little heart with the hope that she had.

This is a Christmas memory gifted to me by my mom. I don't truly remember it, but she tells the story with the passion of someone who still feels the heartbreak, and I can picture it.

Several years later, my mom has six kids - my four young adopted brothers newly part of our family - and Santa still visits. The magic of him is still my favourite part of the season but my sister is a little afraid. Why does he judge us? Why does he come into our houses when we are asleep? My brothers are all on the autism spectrum and extreme energy reactors. The magic of Santa is exciting, the fear of Santa is confusing, the lie causes adults to behave in-congruently, and the junk food (even though Santa seemed to learn all about healthier snacks at the same time that my malnourished brothers were adopted, such a magic man he is!) exacerbated all the confusion. It soon became time for mom to tell us the truth about Santa. But I, who refused to lose the magic of that man, chose to repress the memory of finding out. I went two more years believing, far beyond any of my peers. It did not cause problems because I was quiet, a little bit snooty, about my belief. I didn't argue his existence but, instead, knew I was a little bit more in touch with magic than my companions. A little bit wiser. A little bit better.

When I allowed myself to listen to the true story about Santa, the repressed memory flooded back and I admit, I felt embarrassed. Also, I recognized how a repressed memory can be completely forgotten yet still impact you. It was interesting.

Many years later, I was a mom! My first son was born not long before Christmas and I couldn't wait to begin the magic of Christmas traditions with him! I kept my favourite parts, the magic of Santa and stockings, and didn't keep the parts that hadn't gone as well, the judgement of Santa and the extra expensive gift being from Santa rather than me.

I figured I'd fixed it. Christmas was only wonderful now!

But, no. My oldest son was (and is) a lot like me. The magic was powerful and meaningful for him. He held onto the reality of Santa Clause hard, and I liked to sell it. It felt mystic and fun. There was magic and pretend. It was a game I was playing and the world sort of played along. Encouraged it.

But my second oldest son was less impressed. He is far more skeptical. He was not scared like my sister, he was just unconvinced. Seemed too much like malarkey to him.

One Christmas we were sitting in an airport waiting for our flight home after visiting my mom for the holidays when my second oldest son said straight up, "Mom, tell me the truth. I have to know. Is Santa real?"

It was the way he said "I have to know" that frightened me. He had to know, of course he did. It was all a lie and I'd been telling it like it was not only true, but imperative that we "believe" for the sake of the magic. For the sake of Christmas.

My oldest son, though, his brother, was nearby and less certain that he had to know. He was afraid, I could see it all over him. He didn't want me to leave him out but he was so very afraid of my answer. It was all over him. I was heartbroken and afraid of my answer.

"Well, the magic is real, and part of the magic comes from the story of Santa, but Santa isn't real." Oh, man. My oldest son crumbled. He looked so pained. My second oldest son simply said, "I knew it. You shouldn't lie about it."

My oldest son, though, told me he had fought friends at school over this story. He said, "I told them my mom would never lie to me, so it has to be true. I knew you would never lie to me, I was sure you would never lie to me." I struggled to hold myself together there in that airport. I had tried to give my children magic but I had broke their trust. Broke their hearts.

My second oldest son hadn't actually had the same belief in me that his brother had. He was more willing to see my faults, and to mention them as well.

So, my oldest son had loved the magic and then been heartbroken by the truth. My second oldest son had been skeptical of the magic and confused by a world that clearly kept trying to lie to him.

My Christmas tradition was hurting them.

Luckily, I did a better job with my two younger sons by talking about the magic of Christmas as being about time off and family, and the story of Santa being a fun thing to pretend. It seemed to go okay, but I never quite got the spirit fully back.

Now, many many years later, my two oldest sons are fathers. They are building traditions with their children, my grandchildren. I want to be involved. I want to create traditions with and for them that awaken the magic of the season without making up lies, breaking their hearts, hurting their trust.

We have learned from our past missteps, and that's wonderful.

But I think it unlikely we aren't going to make mistakes now. We could do nothing at all, and that could hurt them. We could completely change it up and invent something wonderful but I bet later we'd learn how something about that hurt them, or some of them.

Particularly at the moment I'm struggling with figuring out how I can be with them during the holidays even though I can't be physically with them. We are too far apart, my funds are not impressive, and crossing the border is not simple for me. Hence, I want to think of something amazing I can do with them when we're not together.

I hope I come up with something that works. I hope they don't think many years from now, "My grandma didn't care enough about me to show up. She would just video call with some story I had to listen to, or some stocking stuffers I had to pretend I wanted her to mail me."

I hope I come up with a Christmas tradition that doesn't hurt the children.

That's what I hope, but I also know the magic of Christmas is largely about the magic of caring so much. Of trying, of telling a story, of singing the songs and leaving out snacks, of WANTING the magic because it connects us. It reminds us to feel wonderful.

So I'll try new traditions. The trying, I hope, will override too much of the hurt.

Happy Christmas Eve friends!!! 


Hugs, smiles, and love!!!
BONUS READ: I wrote this post several years ago about the different reactions my sister and I had to Santa Clause - Santa, Belief, Response 

Tuesday, December 13, 2022

Book Review - Whatever It Takes: Solutions Discovered During My 35 Years Living with MS

Whatever It Takes by Barbara E Ashcroft


Book by Barbara E Ashcroft
Review by Tsara Shelton

I originally read and reviewed this book for Disabled World

“Solutions Discovered” is what I love most about this consequential book. I get excited when someone lives a life, takes notice of it, reflects and considers, and then is willing to invest their time and do the work of crafting their observations carefully in order to share with an audience.

This is what the author of Whatever It Takes has done for us. Barbara E. Ashcroft was diagnosed with Primary Progressive Multiple Sclerosis at the age of twenty-nine. During the writing of the book, she had been living with the degenerative disease for thirty-five years. “My name is Barbara and I like to do things for myself,” is how she introduces herself to us. Due to multiple sclerosis, however, doing things for herself becomes a challenge. A challenge she chooses to overcome by doing – and inventing - things for herself, with the help of a few fantastic others. 

Using photos, videos, humor and insight she takes us through the evolution of her solutions, the evolution of her changing challenges, the evolution of herself, and even the evolution of her Golden Retriever family members. Sometimes a Golden Retriever rather than an ailment is the reason a solution must be modified. Barbara and her family create solutions meant to help her do things as much for herself as she can. Sometimes they would create a solution that made independence easier for her, but the dog would take advantage and the next thing you know they need a solution to the solution! So, Barbara figures it out and creates something ideal for both her and her canine. I mention this because I think it is a wonderful inclusion in the book. That her solutions are focused on enhancing life, for herself and the loved ones in it.

The focus on independence over fashion is another delightful aspect of this book. Making something functional, creating something that aides in living a more independent life or aides in helping her helpers struggle less, is what matters in these pages. It’s such an important and beautiful idea! Not only for someone with a chronic disease like Multiple Sclerosis, but for most of us who live ever-evolving lives. Because Barbara’s disability is consistently on the moving, moving the goal post regarding what is and isn’t a working solution, Barbara’s solutions must also change. Hence, it is a wonderful thing to see each modification as temporary. There is no reason not to be fashionable, not to create art out of the solutions, but there is also no need to insist on it. The fashion, the beauty, the art is in the creativity and functionality.

One of the pleasures for me was that the author does not merely present finished working solutions. She often shows us some of the steps along the way, explaining the thought process, explaining why one solution did not work for her but may work for someone else, and in this way she encourages our own solution-making potential to pay attention. She also reminds us not to focus too much on “success” but, rather, on the entire process.

And she is not unwilling to simply purchase a solution if it already exists. In her words, “Why try to make something when there’s a great product available at a reasonable cost?”

Our world is built for the most common among us. Meaning many are less in need of solutions, but also meaning many of us are not often called to notice the things we use in the course of our daily living.

The author has us noticing so much! It feels like she is looking through the photos and videos with us, pointing things out, regaling us with backstory, laughing and commenting while inviting us into her home, her condition, and her experiences.

Indeed, it is the way she shares her experiences with the reader that I will most remember and carry with me. Her focus on listening and helping, her love of independence, and the fact that she lives in a body that requires her to need help, gather in such a way that her stories are of a woman who cares, who wants to see where she can be of service, who ventures out, and who has a disability that makes it necessary for her seek assistance. The author is in a unique position to share a valuable perspective and she does so with a fabulous attitude and assertiveness.

The solutions in this book, along with instructions, photos, and videos, are guaranteed to help readers as they adopt some ideas and adapt others. However, it is the friendship offered via the author’s narration that I will remember most. It is her friendship, I think, that will most guide readers as they seek their own solutions. It is her attitude, I think, that will especially encourage readers as they strive to do whatever it takes. 

 Visit: Whatever It Takes: Solutions Discovered during my 35 years of living with MS

The book is one I would like to see being read and shared widely!

Hugs, smiles, and love!!