My previous blog post expressed one side of my coin. But there is another… one that surprises me! Two days after I wrote that post, I tried out for a small part in a local play. I forced my son and begged my hubby to try out too. My daughter was already gunning for a specific part ( that she received) and my other son did not have availability in his calendar… but we tried out and got our respective parts.
I haven’t been on the stage in twenty years due to the sacrificial years of childbearing combined with chronic illness issues. When I finally did feel strong enough to feel the pull - I thought I was too old and rusty. It’s funny how life works out. I’m reclaiming my voice ravaged by Lymes/ Anemia/ and Fibro with voice lessons. I’m saying yes to things that would have terrified me before - and enjoying them!
Half a year ago, my daughter provided me with invaluable friends that feel like they have always been a part of my fabric of existence. All of them are in the arts in some form. All of them are a range of a decade (to two) younger than me. Yet, I consider them my friends. I believe most of them consider me a friend too. A couple in particular have become exceptionally close. These friends have brought out attributes of myself that were squelched or needed to take a backseat in other seasons. (It’s also a matter of right time/ right place.)
I don’t regret my previous seasons. They’ve shaped me into the person I am today. I don’t regret the many times I stepped out of expectations for me ( to work/ to serve/ to put my children in school/ to go to church/ to not go to church/ to have my kids in official things or normal activities / to conform/ to be in all the things/ to perfect all the roles …) in all my seasons I wanted Spirit to be first. I trusted Spirit to guide us in the kingdom upside down when it was tough. I wanted to live as a Being not just a doer and wished my children the same. There were many times our decisions looked impossible to others ( generally they weren’t and just required others sorts of sacrifices unrecognized) or like failure, but they built the home and the beautiful family and community we have today.
This is a new season. I’m still the same person with similar issues in any given season of health… but I know more strategies, work arounds and supports. Yet, I’m being stretched in a fun way. I’m being taken gently out of varied comfort zones in ways that suit me. (In areas of singing, dancing, socializing, and all that comes with the beautiful community of that.) I know I wouldn’t have tried out for Newsies if I didn’t have Darta, Autumn, Eden and Natasha in my life. Each one played a different part. Thank God. Because I have been taught a new lesson… One CAN suddenly thrive alongside certain levels of surviving. The key component? Faith and community. Having a previous season where I learned how to say a healthy no so that now I’m more familiar with what I can say YES! To.
I prayed that I would learn how to have fun for years. It felt like a frivolous prayer… and while I did have fun with my husband, children and friends… I didn’t have any outlets for my particular interests besides books. My Elphaba was honoured while my Galinda sat mostly silent. That was ok, but sometimes I wondered if I was so caught up in disability and chronic illness rhetoric, that I forgot sometimes about the other side of the coin. There was a time a few years ago when I realized I sounded more like a victim, than a person with struggles made in the image of God. My issues mattered but God was before them. My interests matter too but ONLY WITH God beside me.
I’ve had a few breakdowns lately on a level that my husband hadn’t witnessed since my miscarriage days… just to show that everything is not perfect- BUT I’ve also had so many fun and happy moments I wouldn’t trade! I prayed for wisdom in diet and health and slowly it’s been making a change. Not only have I met younger friends but also wise aged friends like Sandy. Sandy is almost a couple decades older than me but feels my age. She comes to pray with me ( something I generally dislike to do with others) and for the first time in my life it feels restoring and good! Age truly is relative and not significant when it comes to Kindred Spirits. Or my past friends who’ve mixed with my new friends for varied book studies that sustain and go deep into the wonder and grit of life. Or the constant friends I’ve had for years, who see these changes in me, and instead of begrudging me or asking if I’m in an odd happy midlife crises they state things like, “ it’s about time ! I always knew you should be in a play!” Or “You’ve always had a beautiful voice and now I get to hear it more.” Or “ this looks like so much fun! This suits you! I’m so glad you are having a blast.”
I sit back and all I can think is - Beauty, Wonder, Community and Imagination can save lives. They can take us up out of ourselves and out of the alternative of nihilism, pessimism and victimhood. Is there still great suffering ? Yes. Does grief need its place? Absolutely! Are there seasons? Always. But if a dry season lasts decades or the same complaints continue through ones entire life- the question needs to be asked… Can we instead look for whatever is true, noble, good, lovely, admirable and pure? Are there still flecks of beauty to be had? Can there be choices of perspective and daring risks that suit us- to step into that beauty?
Some days I’m in pain and out of breath and my life still matches my last post. But now, I often choose to lean into my community, ask for opportunities and seek out the good and beautiful I’m equipped to partake in. It comes with discipline, harmony, compassion and a calmer approach to life’s dramas. It also is a blessing and its own sort of miracle that I attribute to my Creator who made all things good and truly does love joy.
Wishing you glimpses of joy and beauty this season in your life! May you say YES to the goodness enveloping you with gratitude and find support during inevitable grief.
“What miracles, what wonders, what greatness belongs to you… your mercy grows through the ages, your faithfulness is firm, rising up to the skies…you’ve healed me inside and out from every disease… you’ve crowned my life with mercy… you’ve supercharged my life so that I soar again like an eagle in the sky. As my whole heart explodes with praise… how you’re marvellous miracles exceed expectations… as I make music…my heart oh God is quiet and confident all because of you. Awake oh my soul… with songs of light. Wherever i go i will thank you. Your love stretches to the skies…” ( Broken Part 2 Michael W Smith) https://www.youtube.com/watch?v=3kA-3RvDDN4
Song choice: The Most Beautiful Things- Tennille Towns
*I have been asked to write a post to help autistics especially deal with this time period at Home while healthy (other subjects are another post) I was also told that Neurotypical people could also benefit from the post...I can only hope this will help. I will be mostly referencing other posts that I feel should be read which are mostly WAY shorter than mine so yay! (I also tried to make mine shorter so you would have time to read the articles.)*
Changes can be especially hard on Autistics and all the people who have differently wired brains from the majority or differently abled bodies. We even struggle with happy changes. So when a societal change happens and it affects all areas of our lives, we are going to probably experience more meltdowns, behavioural issues, anxiety or executive functioning fails. Even if we are benefiting from certain aspects like online shopping or access to free helps we did not have before.
Many people with developmental disabilities won't fully understand the new rules of society. They don't understand why they can't keep their routine or see their usual friends or supports the same way. I feel for those whom may get fined for not social distancing whom can seem "normal" but don't quite understand the meaning of social distancing. These two articles speak upon the disparity that can happen: Independence versus Dependence by Musings of an Aspie CLICK and Decoding the High Functioning label by Musings of An Aspie CLICK.
The sheer level of ignorance, even in normal "IEP" or specialized educational expectations for those whom are Neurodiverse shows our society's unreasonable expectations. I am worried about parents enforcing these on children in isolation. As this article ( https://musingsofanaspie.com/2014/11/13/unreasonable-goals/ ) states, I, as a 30 plus adult, can not even meet some elementary school programs expectations. As the author comments, I am not against special programming, or aid, but these need to also be coming from reasonable expectations and with guides from those whose brains actually work differently.
What does this have to do with isolation and covid 19 times?
A lot of disabled adults and children ( autism, down syndrome, learning disabled, differently wired, IQ differences, dyspraxics, handicapped, and multiple others whom are different yet not less) are still being expected to live under unreasonable goals. 'Unreasonable' will be different for each person in terms of needs and require contextual support. An example of this would be of a mother who has a special needs child whom pushes them to accomplish the same as their other children and when it happens they state, "The doctors said it will never happen but look what it she/he did!" As the child is pictured clearly melting down in the background. Or showing a confused look of pride because they did something that made mommy happy but that they would never choose on their own to do...and their emotions are not considered. The mother pushed, the child performed even if it is a great accomplishment they were not supposed to perform, but inside they feel turmoil that can not be expressed. The injustice they can't give words to. That maybe they did not want to do that, just because they could. Maybe it was not important for them to prove it?
I understand how it is important to push at times, in order to help a child or adult become their best...but then we get into the question, "What is best?" What if your version of physical fitness or learning the list of vocabulary perfectly, or reading at that level, are not in the best interests of the child? What if they do not want to climb that hill? Does that mean they are less motivated or less accomplished? What if they prefer to sit and watch or read? Does that mean that they have less of a life? What if they prefer to run around instead of read? It is important they can learn enough to support their best life and what they can do for basic living, but what then, if they do not want to engage on that level? In this article ,Autistic Soul (CLICK) writes, "Part of my job as the parent of an autistic child is to make his reality as tolerable as possible, and this means showing him how to adapt by working with his sensory issues – like going to the shops when it’s quiet and wearing headphones to block out excess noise. Parents will find that children spend less time in their fantasy worlds when their needs are being met, and this includes their educational needs, but they must be aware that fantasy/escapism may always be an integral part of their child’s life, no matter how old they are. "
That is where covid comes in...these children and adults are still in their homes, abiding by the rules, either by enforcement or coercion or understanding, but they are still differently wired people. They still require different rules within the home, differing perspectives and understanding. I was shocked that the schools are giving home work worth six hours a day!This would be unreasonable for any home schooler with a few special exceptions. It's not needed yet the schools are asking it. I understand there is a concern children need something to do- but there are MANY ways to have a rich life at home.
Cynthia deals with an aspect of this on a post on sensory sensitivities in changing seasons: https://musingsofanaspie.com/2014/10/23/changing-seasons-and-sensory-sensitivities/ . This can also be applied to the changing season of Covid and some anxiety, behavioural changes and sensory preferences that could happen to any Neurodiverse child ( again this does not apply to just autism but a lot of diverse people groups.)
Also, just like there is a spoon theory for those with chronic illness, it also applies to those with disabilities: https://musingsofanaspie.com/2014/10/15/conserving-spoons/ I think many "ordinary" people may actually feel that they are not normally abled during this time. It's not the same as being disabled in day to day life, but some may feel some of the same restrictions that disabled people feel daily. This is when the "normal majority" may be able, in some small ways, to understand those of minority to a degree. They are walking in the shoes where culture collides with normal living.
Cynthia wrote HERE about liminal spaces like the current Covid situation; "It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to. It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown. It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not. It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.
It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will.Adapt what is usefulapplies to more than just kung fu."
If a "normal" parent needs to tell themselves these facts during this liminal time of Coronovirus, how much more does a child need to hear and FEEL this allowance from their parents? How much more does a neurodiverse adult need to make allowances for themselves or have their families give more understanding?
Where do I get authority to write about this? I am a wounded healer. My so called faults are also my virtues. In native traditions, the wounded healers were those who had been through something and survived, and then in turn brought understanding and solace to others. They have faced the challenges where the wind blows the hardest and yet their roots run deep. Their strength is in the difficulties they have learned ways around or acceptance in living those differences out. I have been deeply wounded by experiences. I have also healed some of these wounds. It is a journey. I am autistic. I am not ashamed of who I am but have had to face shame before and will again. I have multiple disabilities but I also have multiple abilities. I see the world differently. My children also have differing brain wiring, abilities and disabilities.
I read this post https://www.learnfromautistics.com/autism-interview-121-autistic-soul-on-late-diagnosis-fantasy-and-autistic-identity/ and for a moment I wondered if I accidentally wrote it in my sleep! I could have almost written it word for word. Which tells me that my experiences are not just mine alone. Some may be particular to me, but the larger lessons I have slowly learned, can perhaps help others? The numerous articles I have consumed and made part of me, can now be helpful to those who do not search for such things, but need the alternative perspectives to understand the differently abled around them. If you have such people in your life, please read or mark the short articles for later that I have referenced here. They may just help you during this time too.
*If possible get together with a few safe friends whom are healthy. Just wash. Human connection in person is healthy for your child too.
Song Choice: Life- Our Lady Peace "Oh life is waiting for you. It's all messed up but we're alive."
I participated in a two part interview athttps://learnfromautistics.com/blog/Please check out Jenna's site as it is an excellent resource! I LOVED the interview process with her, she also edited all my words, which took the pressure off my executive functioning issues! Thanks Jenna for all the hard work you do on behalf of Autistic people and for asking me to participate.
AutIstic INTERVIEW #97 PART 1: KMARIE ON THE BENEFITS OF KNOWING YOURSELF
This is the first part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. She is is drawn to music and often uses song lyrics to express her emotions. Her beautifully written blog details a variety of different life experiences, including (but not limited to) living with Asperger’s, INFJ personality, low ferritin, and chronic illness. This week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language.
On your About Page, you write, “I believe when we know ourselves first, we make the world a better place.” Can you expand on this?
Baruch Spinoza (one of my favourite Philosophers) wrote, “The more clearly you understand yourself and your emotions the more you become a lover of what is.” If we can not understand why we choose different ethics, emotions or responses, then it is tougher for us to understand people who are different from us. I feel, when we love what IS our life- whom we ARE, we are able to activate change because our foundation, grounded in a sense of secure self to a degree, is built. When we know our motivations and why, I think that it is easier to be compassionate about the way others are. Thus making the world a better place. When we are at peace with our own understanding of where we stand, how we are, and whom we wish to become, we add that strong, solid stance to the human collective. Perhaps it’s a bit of a Stoic mentality, but when our self is in check, understood, and balanced, we are less prone to violent rage, ignorance, and trampling of other’s basic human rights.
How do we go about “knowing” ourselves? How have you learned more about yourself? In what ways do you continue learning?
Wow, this is a big question that will have a big answer and I will still feel I am leaving things out…Feel free to skim.
There are many mediums to learn about self. Cognitive therapy, conversation, film, art, music, reading…but specifically, I feel that in-depth knowing of self can often jump off in Personality Typing. The issue with Typology is that often people answer questions with how they wish they were or how they mistakenly perceive themselves and thus get the wrong result. A wrong result is worse than no result. I often tell people they will know it is right when they read their overview and think, “How did this person crawl into my mind?” MBTI tests like Personality Hacker or 16Personalities are excellent starters. I am an INFJ. In the past, I mis-tested as an INFP, which, after reading the description, I realized I am most definitely not. INFJ described my life. The Enneagram is another layer of self, but again, the testing is tricky. I am a 4 with a 5 wing.
There is a certain sense of “Becoming” or “Knowing” when I read a book or a test result that resonates in frequency with my soul. When I found out I had Autism/ Aspergers…that was another piece of ME. But honestly, knowing yourself DOES come with some struggles. Each time I find a new aspect of myself that resonates as true, I go through a mini identity crisis of “Oh wow I am like that? That is something I now need to work at embracing or growing in my life.”
At first, it can be hard work…learning about personal strengths and weaknesses. Sometimes even if it feels true, it may not be wished to be true…and it requires some soul growth. I cried about my Enneagram Fourwhen I read Beatrice Chestnut ‘s book, but then I read the “Sacred Enneagram,” and even though some of my core beliefs may sightly differ, that book put my four back into some perspective… and then I found a blog by an actual Enneagram 4 that dispelled the multiple myths from writers trying to understand but not actually Fours themselves. That cleared everything up for me. I still enjoy Beatrice Chestnut’s ideas, but I take them with a self aware grain of salt. Now I am proud to be a four. But that is because I had that guidance from another actual Four type.
It is the same concept with a “professional” versus an “actual Autistic” voice. Both have value, but choose the actual Autistic voice first and foremost. It’s why it is so important that we tell our stories…even if we think they don’t matter or no one is listening. When we tell our stories, it enables others to tell theirs. But after the hard work of an initial new knowing of self, a new layer of understanding is born, and that is often when life tends to get better. Or at least, I become better within the normalities of every day living…
Oh, I am a self growth junkie. I kind of “life coach” people in my spare time so I am constantly on the lookout for new paths of knowing and learning. Currently I am reading “The Goddesses in Every Woman” and “God’s in Everyman” based on Jung Typology rooted in Greek Archetype Myths. I was blown away when I found out I was an Aphrodite and wrote a post on that. My pre-judgments going into that were challenged. I often feed my learning through regular reading of Philosophy, Psychology, Educational, and Sociology themed books. Right now I am reading, “Life through the Lens of Unschooling” by Pam Laricchia and finding myself in many of the pages. I also just finished an Alan Watts book. We are conducting a book study in our home. We also host “Called to Question Gatherings” to which we invite people who are passionate about topics to educate listeners and discuss in an openly peaceful forum of differing beliefs. We have had a lot of professors, educators, and laymen speak about topics that interest them. I firmly believe we learn more from people who are excited about their own stories.
I am constantly on the lookout for viewpoints opposite of my own to challenge any stagnant thinking I have. For instance, I heard about Jordan Peterson and his controversial book. Initially I was very against him, but after watching numerous You Tube videos of his discussions, I finally began to understand his story and where he was coming from. I read his book…I was annoyed at some parts, and disagreed with some, but I also came away with a belief that for SOME people- his book will make them better people…and for THAT specific audience- his voice matters too. Even if it is not something I would fully support, I at least respected the way he holds himself in an argument. If I feel I am becoming too conservative, I read more liberal people…and if I feel I am becoming too liberal (which is more my natural tendency), I re balance by reading a respected conservative. I always try to make sure my sources at least share a value of trying to make the world a better place or some sort of ethical platform. While I am a rebel in my own way, I am also a rule follower, so I try to find people who have that balance. I try to have a ratio of books that would be in agreement with whom I am, but also that require me to do outside the box thinking. As Baruch Spinoza writes, “No matter how thinly you slice it, there will always be two sides.”
You recently wrote a blog post about increasing executive functioning and language difficulties you experience. How does this impact your relationship/interactions with your husband and children? Are there ways they can support you during these times?
It has been hard. It is taking me longer to process. Normally I am a rapid processor. I can read a book easily in a sitting, but it’s been taking me a bit more time lately. Getting my thoughts out in real life, as opposed to writing on a page, has always been more challenging, but now, to my horror, it is translating to paper/typing too. I admit I have been in panic mode lately, and I am trying to use the time I do have with more accuracy to advocate for myself, with my children and husband. Plus, I want them to have the skill set to navigate deterioration or different paths of communicating when/if it happens to them. So the times I am more cognizant, I have been reading them posts of others this has happened to, I try to explain, I try to give them an understanding of the brain, nutrients, what is possible to control and what is not… But then there are the moments when I have no words and I get frustrated easily. Honestly, I am still learning to navigate this with them. Most of this year I have felt like a massive failure.
I home school my children, so I do need a certain level of communication to keep them up in their studies. Our facilitator just came and was happy with their progress, but I couldn’t shake the failure pit of despair in my gut. Deep down I know though that I am resilient and loved…and we can work with whatever life throws at us with enough hutzpah. Basically I am stubborn in believing in my worth and contributions overall because it has been a life long fight of mine.
They have naturally helped me by giving me words. Luckily, I am so in tune with my husband and children, they often know what I want without me saying much. Over a decade with chronic illness with spurts of pain so bad I cannot speak has given us practice in this situation. My daughter knows with my facial expressions generally what I want. We have an almost made-up language of gestures, expressions and grunts etc. She brilliantly figured out that often when I am in “the zone” and they try everything to get my attention and I just can’t give it, all she has to do is gently stroke her finger down my cheek or stroke my hair and immediately I pay attention. My husband never figured that out…he always tries to talk louder or suddenly sits beside me or uses shock effect, and that won’t get my attention. I may startle, but I won’t be focused. I appreciate my daughter figuring that out. I thought I hated most forms of unexpected touch, but I appreciate when she does that.
My husband luckily has the best sense of humour. He is also generally a natural care taker. So when I mess up my words, he does often laugh, but it doesn’t bother me because it is in an enjoyment way…he loves my interesting speech slurs, word and phrase mix ups, and the way I speak. But he is pained for me if it is getting in the way of my life. I now often look to him in a conversation, and he knows he is supposed to jump in to supply the words I need to make my point. He never takes over though if I am struggling through, but I wish to continue. He generally has worked out cues with me to know when I want support and when I do not.
I really struggle if I am in a flow state and get interrupted. Often my words won’t come back and I can become frustrated for the rest of the day. My family is learning not to interrupt when I am in a monologue.
I have never been able to express some of my emotions without typing or writing…so when I am mad at my husband, he knows by the songs I play. He also tends to know my mood by the music I choose. Music is a massive form of communication in our home. Often, even though it is important to me, I forget to use it. So they all work as a team to make sure I have access to music or remind me that I haven’t listened to any in awhile. It’s like drinking water. Yesterday I became so dizzy and nauseous to the point of curling up in a ball for an hour. My youngest came in and said, “Mom I don’t think I saw you take one sip of water since you woke up.” I thought about it, and he was right! I was swiftly brought two cups of water and half an hour later, I was fine. My family views music as important as water in another way. It is communication, so accessibility to it and reminders for it are part of our day.
You often use song lyrics and music to communicate your feelings. Describe your relationship with music. Have you always been drawn to music?
Music is my life. I don’t feel I could fully function or feel fully human without music. As a little child, I would grab the microphone and sing 80’s rock and roll at the top of my lungs. 70’s and 80’s rock is still what I need if I require an energy burst of happiness. In the crucial moments of my life, the right song has come along to describe my journey. I also can’t seem to cry often unless I have a song to trigger me when I need to. I have to go to songs for those moments like Celine Dion’s “Fly.” I have a song for everything basically. Before iTunes and the Internet, I would know songs from every genre and educate my friends in all of them. I constantly made mix tapes and then burned CDs to express my friendship to people. I communicated my care, and I still send song lyrics via text to my friends. I also love introducing people to new songs. Lyrics are first and foremost my way of speaking. Even in my ordinary day to day speech, those who know many songs will hear lyrics sprinkled throughout.
I can’t listen to classical much. I find music without lyrics really stressful. It’s fine if it’s background for a movie, but not playing on the speakers. My husband loves classical, and I will tolerate it for awhile before I put on headphones or beg him to put on ANYTHING else with lyrics. Every genre fills a need for me. I am also seasonal in my music needs. For some reason I crave country in the Spring or when I want to celebrate simplicity. I love Jazz and Easy Listening leading up to Christmas. Rock ‘n’ Roll, Broadway, Pop, Metal, Show tunes, Opera, Punk, Indie etc…it all has its place. I like everything except for Screamo and most Classical. Although I am grateful to Classical for getting us to where we are today and there are MANY beautiful pieces. I just need lyrics to ground me.
Music is part of my soul. I would literally be lost without it. I have a soundtrack playing inside my head for every moment. It expresses a part of me I can’t seem to access otherwise. That’s why the show ‘Glee’ was and is still important to me. Most people don’t get that. I still watch later episodes of Glee when I’m on the treadmill or if I’m having a tough time or if I need to express something. Glee combined all of my interests and obsessions; film, music, movie, artists, self growth, friendship and connection. It did so in a way that was both irreverent and satirical to all subjects and paradoxically respectful and acknowledging. But first and foremost, it expressed the inner energy I have inside. In it I found my voice once again.
When I first found out about my Asperger‘s diagnosis, I was also introduced to the Broadway musical Wicked. Broadway and film have been huge aspects of my life almost as much as music. As a child I would longingly wish to escape into the 1940’s films. Singing in the Rain, etc. When I found out I was Autistic, the role of Elphaba in Wicked really made me feel less alone. I would play ‘Defying Gravity’ in tears over and over again. My husband knows every lyric due to my continuing obsession and repetitive listening. It helped me navigate the two years I was still finding myself within my diagnosis.
KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:
This link is by Kodi Lee who is blind and autistic and just won the golden buzzer on America’s Got Talent. His relationship with music and his mom had me sobbing. The way he uses music as his life – I can relate.
Also Me by Taylor Swift because each Autistic person deserves to feel that “I’m the only one of me – and baby that’s the fun of me.”
