Summer Renewal, Epicurean Light, Magic and Meaning Whilst Embracing the Micro.

I am officially an "All Seasons Gal." Each season has had it's turn to shine in my life and become a well loved source of joy.

Back in February I kept running into the word "Transformation." I sensed change was upcoming which was scary and hopeful all at once. All the signs intuitively were pointing to a birth of sorts. But in order for birth, there must be death first or necessary endings. Luckily, many of my endings were not as painful as the anticipation of them. And the renewal that swiftly swept in made up for any losses three fold. "It takes courage to endure the sharp pains of self discovery rather than choose to take the dull pain of unconsciousness that would last the rest of our lives."- Marianne Williamson

Speaking of loss, the picture of the mirror above was a garage sale item I found for a buck and it's solid bronze. My youngest broke it on it's way into the home, my husband trashed it, I rescued and glued it and my daughter glittered it. I love it even more now. It contains a story and a context belonging to us with mystery from the owner before. It is lovely. Reflected within are the truths of messy mistakes glittering life and refracting with even more astounding beauty.

I have learned to accept my Stoic leanings but balance them with much needed Epicurean pursuits. I have found an explosion of magic and meaning, mystery and logic, and the paradox of beauty in darkness and light. Of course, those aspects were always in my life, but the Litha sun has basked them into full bloom.

Temperate weather has probably helped as our weather has been fluctuating between rain and sunshine and averages around 20 degrees C. On my front porch, which faces south, and is always about 7-10 degrees hotter, it is pure perfection for when I need heat, and I can walk off the deck for cooler temps. Which equals sensory delight. The wild roses are releasing my favourite fragrant scent and the bees are in abundance this year. I am in absolute awe of the nature surrounding me. 

I have taken the time to watch the gophers walk up to me curiously on hind feet, the birds chirp happily a few paces away, the ants busily making their nests...I have witnessed coyotes, buffalo, Canadian geese, deer, eagles, ravens, horses, cows, beavers and a snowy white owl...all in one weeks time. Oh and a frog the size of my hand standing in the middle of the road on a late night walk beneath the waning moon. These happenings have swept me away with gratitude for the wild place I belong to. 

Of course, aspects of my introverted self still suit winter, but I think I have become balanced enough to finally suit all seasons comfortably. And I am also ok with the fact that some years I will be drawn into differing seasons, but now as the wheel of the year turns, I am finding peace in what IS. "We do not grow absolutely, chronologically, we grow sometimes in one dimension and not in another or evenly. We grow partially. We are relative. We are mature in one room, childish in another, the past, the present, the future mingle and pull us backward, forward or fix us in the present. We are made up of layers, cells and constellations."- Anais Nin. 

I've reconnected with some beautiful friends from Jr/Sr. high school and discovered other connections that help round out other aspects of self. The world is full of beautiful people. Some suit us for parts of our journey while others need a break.

I've also severed some ties that encouraged me in my winter introversion, and admit-tingly supported me to be a bit of an intellectual snob at times (not a lot but there were a few fleeting realizations. Although that is completely on me as no one can force us to become what we are not.) Perhaps I was too concerned about being "frou frou" or lacking substance? I'm naturally deep so swimming in the shallow end is not something I am used to. Maybe I was shirking away from sunlight because I felt the shadows held more appeal? But life is BOTH yin and yang. I was not scrutinizing the downsides of thinking too much. Ha, maybe I am still thinking too much... I was holding on to things that held me back while also containing others. I took solace in being stoic all the time. Stoicism is still a beautiful and needed aspect of balanced living. Intellectual pursuits are worthy and wonderful. But there is something to be said for mysticism and innocence. As Harry Potter exclaimed with wonder, "I love magic!" Yes! The magic of BEING begets so many moments of ordinary bliss. If only we re- train ourselves to pay attention to the micro world. 

Ritual and spontaneity need a marriage of respect. I have recently discovered both in ways I did not behold before. We all have the power to create. We can create with our words because words are powerful entities on to themselves. They build worlds, challenge beliefs, strengthen resolve, and enable life. The invisible becomes visible with an utterance of a word. If that is not a bit of magic, then what is?

This Spring and Summer have taken us adventuring with the shadows behind us and the sun in our smiles. Moments of storms and light reflecting crystals. "No matter how thinly you slice it- there will always be two sides."- Baruch Spinoza.

 I hope that I will always find the light in the darkness and the beauty that can come with life's storms. But I also hope that I won't just let my sufferings define me. What tiny moonbeams or star flecked skies do I ignore because I am searching for the fireworks? I have had to ask myself whom I am without my cultural expectations of self, and whom am I without my suffering?

I have had two Lyme flares since the Spring but they have been fleeting. When they do come around I have asked myself to respect my body's demands, but to also not define myself from past flares. And when I do come out of a flare, to then quickly focus my gaze towards the micro world. The picture below I would have NEVER posted before without make up in a flare, but the sun healed and it was a symbolic moment of embracing what is and averting my gaze to what can BE. 

I have spent the last decade plus learning about sensory overload, boundaries, chronic illness symptoms and management, dyspraxia, learning disabilities, and my shortcomings. All of these were needed lessons and moments. I still plan on maximizing some of those truths learned in the future. But there is a time for whimsy, childlike belief and wonder. 

Each day I wake up with anticipation, eager to learn the lessons and joys of the gift of living. Not all seasons can be like this of course, I know that due to my own past of hardships, but when they do come, it is not a bad thing to celebrate the ordinary minuscule that often gets overlooked. There is so much wonder to behold. I have taken time to watch clouds roll by, feel the home made ice cream melt on my tongue with peppermint tang, sense the sun warming up my body from the outside in, watch the bees buzz in a flower, and stare at the rainbows made by window crystals. These are not wasted moments. I still get needed organizational aspects of life completed, but they are enriched by the micro magic.

What will people think if they catch you cloud watching or focusing dreamily on a flower? What will be their reaction when they witness contentment, magic, wonder or childlike actions? If you are worried that they will leave you based on this kind of living, why are they invited to witness your sacred life in the first place? Feed your soul the food of dreams and stories. After all, your story is your epic life. Your moments are now and they won't last forever.

"I know it's a drag, I know it's a grind. I know that a dollar ain't worth a dime. Just trying to keep up with the Joneses at the end of the block. I know you get tired, I know you get down. I know you get sick of this soul sucking town. Let's make a little lemonade if lemons is all we got 'Cause I'm stuck on you, you're stuck on me. I never gotta wonder where my honey be. I ain't saving all my sugar for a Saturday night. Seven days a week I got an appetite. Sunsets like a tangerine, let's find a road we've never seen. Don't waste another mile or a minute not kissing me. Life is short, make it sweet
Open sky, glimpse of heaven, take the top off the CJ-7. Let that surfside Santa Ana wind mess up your hair, And let that windshield frame the ocean, Radio keep coast-to-coasting, If we don't get where we're going baby I don't care. I'm already there. 'Cause I'm stuck on you, you're stuck on me
I never gotta wonder where my honey be. I ain't saving all my sugar for a Saturday night. Seven days a week I got an appetite. Sunsets like a tangerine, let's find a road we've never seen. Don't waste another mile or a minute not kissing me. Life is short, make it sweet. Days will be long but the years will fly right by. We'll never be as young as we are tonight. Baby ain't that right, yeah. 'Cause I'm stuck on you, you're stuck on me. I never gotta wonder where my honey be. I ain't saving all my sugar for a Saturday night. Seven days a week I got an appetite. Sunsets like a tangerine, let's find a road we've never seen. Don't waste another mile or a minute not kissing me. Life is short, make it sweet."- Old Dominion Lyrics

With deepest gratitude to dreams, stories built from magical words, mystery and the micro. May you find your little joys to sweeten daily life.

P.S. Happy Canada Day. 

Song Choice: Make it Sweet- Old dominion

       

AUTISM INTERVIEW #97 PART 2: KMARIE ON ADVOCACY AND DEVELOPING A POSITIVE AUTISTIC IDENTITY

AUTISM INTERVIEW #97 PART 2: KMARIE ON ADVOCACY AND DEVELOPING A POSITIVE AUTISTIC IDENTITY

This was originally posted here: https://learnfromautistics.com/autism-interview-97-part-2-kmarie-on-advocacy-and-developing-a-positive-autistic-identity/ I want to thank Jenna for asking me to partake in this series. She helped give me back my voice in a way...This was a fun endeavour. Jenna was excellent at letting me add things after the interview, giving interesting questions, and editing my posts for me. I would highly recommend the experience to an Autistics/ Aspies out there! Her blog is an excellent resource.
June 11, 2019

Interviewsadvocacy, autistic identity, Kmarie, parenting

This is the second part in a two-part interview with Kmarie. Kmarie is an autistic wife, mother, and blogger from Canada. 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. Last week Kmarie discussed her relationship with music, the importance of self knowledge, and her struggles with executive functioning and language. This week Kmarie shared advocacy advice for parents who are trying to raise children with positive autistic identities.

What mistakes do you see neurotypical autism advocates make?

Not listening to actual autistics. Yes, we are diverse. Some of us believe in the social model of disability while others the medical model…I am the in-between group that leans more to the SMD but believe in the validity of both to a degree….but our divergence on topics should not stop people from listening to us and gleaning information on how to parent or care give to those with autism. 

I recently read a Psychology Today article that had me enraged me with insinuation that we needed to be eradicated. I have to stay away from the politics of it all because I become locked into more language difficulties when I am upset. But the biggest mistake I see is supporting places that give more voice to the eradication of autism or not listening to those who actually HAVE autism. 

Another mistake is getting bogged down by politics and identity language. I know it is an important part, and for some autistics, it is especially crucial for their healing, but overall, I feel this should be later on the list of importances, and first and foremost, it should be about support. Support, understanding differences, and validating before improving. Most of all, they need to know they are loved for whom they are, not for what they could be. Their souls deserve to know that being accepted is part of their parents’ choice.

What have been the most important factors in helping you develop a positive autistic identity?

I can remember years ago, reading “Aspergirls” by Rudy Simone. That forever changed my life. Her approach was so laid back but relatable. I find my certain concoction of whom I am is helped more within my favourite fantasy books in the YA 9-12 section. Percy Jackson books also helped me see the hero within my learning disabilities. I suppose I am easily positive. Cynthia Kim from ‘Musings of An Aspie’ became a friend, and she wrote “Nerdy, Shy and Socially Inappropriate” which changed my life too. Sam from Everyday Aspergers is also a friend and was a HUGE part of my positive Autistic journey. Finding them was one of the best things that ever happened to me. Before then I was reading mostly “professional” literature…Tony Attwood etc…,but they linked me up with other people on the Spectrum.

Also, seeing autism manifested differently in my children, and their beautiful, insightful souls has also been a huge part of my positive autistic journey. I also need to stay away from autistic blogs that focus on language, identity politics, and hard hitting issues. Not because they are bad…they are needed too and I cheer them on in the background for the most part…but because I start to lose focus of the good things. I also have memory issues and speech problems of my own and have been corrected by others on how I refer to myself. I don’t appreciate that aspect. I try my best, and it will fluctuate. As I am easily positive, I can also easily derail. It is why I stay away from the news. It’s not because I am choosing to be ignorant. I make sure I educate myself in varied ways, and stretch my mind…but it is because I am heavily empathic and easily take on someone else’s anger (Even if it justified and right…It’s not mine…) Being an extreme introvert, I am a hermit on many levels, and I have to protect my space in order to keep my innocence and positivity. Honouring my boundaries and need for space, kindness and tolerance in that regard has helped me have a more positive identity.

What advice do you have for parents trying to raise their children with positive autistic identities?

Respect the sensory. I know many parents cannot take their children out of school, but if there is ANY way that is possible, it is amazing what the home environment can do…if it’s a healthy one. And if not, make the school day shorter, find sensory safe spaces often, make the home magical and healthy to come home to. I was astounded the second year my children were home at the differences in whom they became. Their communication was clearer, they were more confident, they became happy within themselves, less sick, less anxious, less depressed…and all of this was because their sensory was under their control. We decorated their rooms the way that suited their personalities, and we made sure to include sensory items. I wrote a post about creating safe havens that has been helpful for some.

I have written also written posts about Sensory Overload that many parents of Autistic children have found especially helpful. My post about Sensory Overload at Christmas expresses how being Autistic still affects even favourite Holidays that I enjoy thoroughly. I explain Sensory Sickness with the example of one Halloween in our family along with tips and tricks to see the signs of “sensory sickness” early, which is a step up from Sensory Overload. In THIS post, I break down effects that are a part of sensory overload in general Holidays. For example; Odours, Relationships, Outfits, Anxiety, Food Intolerances etc. and I give examples of what that looks like in our family and solutions to some of these issues.  Finally, I wrote about our family’s experience at the zoo, which was a little piece of torture on earth, especially at the time when the children were younger (I still loathe the zoo). Many Autistic children do not have the words or emotions to clarify what is happening in these scenarios. If I am being honest, I didn’t either until I wrote these posts (many of which were written a few years ago, but still apply for any parent who is looking for guidance in these areas). There is also the other rare time of sensory deprivation which I wrote about HERE, although for some Autistics that is more the norm of their sensory experience. For myself, Sensory Deprivation, or what I call my “robot mode,” is rare. 

Another aspect of helping children with autism manage the sensory is diet. However, I do not believe the claims that diets “cure autism.” Often what is happening when people claim their children were “cured from autism” from a dairy-free, gluten-free, sugar-free diet is that they are simply managing the sensory better. We have been on that diet for 5 years now, and what is actually happening is that it takes down a lot of the sensory within (from the gut)…which enables clearer communication at some points and more comfortability. But we are still the same people. We still have our unique way of looking at the world. It’s just that our guts are in less pain and permeability so our nerve pathways are open to us handling a bit more out in the world. What works for one child, may not work for another. But in general, find the sensory that is overwhelming or underwhelming your child and try to remove a lot of it or work around it because then they will have more room to express themselves instead of just trying to cope. Also, if they can’t choke down a food, it is easy to find an alternative or creative way around it. Food is important though in terms of helping them be under less sensory distress. Basic respect is often forgotten and autonomy is not given to children…and children deserve to be part of their own care and to be able to have a say in it. 

Next I would say, read to them beautiful, positive articles from actual autistics. My daughter is reading Aspergirls right now, and she can’t relate to the parts I did, but the parts she can make her light up with happiness. My son loves to hear Musings of an Aspie articles…especially ones that focus on Executive Functioning and understanding how his brain works. We celebrate our autistic identities. I let my children refer to themselves however they want to be referred to. “Aspie” is akin to “dearest” in our home. (Our son was diagnosed at age 4 when Asperger’s syndrome was still in the DSM5. We still use the term even if it has gone out of use in the professional world or not liked by others. In our house, it’s a term of endearment.) I feel it is important, like personality typing, to learn the struggles and benefits of BEING in the world. Being Autistic also fits into that.

 Also, when the children are in a meltdown, give them safety, love, and care. I’ave written about how to deal with meltdowns by other Autistics and included links to similar resources HERE. Know that they are not acting out of spite, but out of pain. Read up on other autistic thoughts on meltdowns. Give them code words for when the world is getting too much or when you are out of the house, and they need to keep their dignity, but leave a situation. 

I also feel that Autism often comes with co-conditions. It is important for caregivers and Autistics themselves to understand the co-conditions too. For example, I have Dyspraxia. Often, most of my frustrations and issues people pick up on are actually Dyspraxic attributes and NOT Autistic. There are many “cousins” of Autism that overlap, and it is important to research all that apply to the child. Autism sometimes will not address the struggles the child may encounter, nor the great differences that require celebration! 

My youngest has multiple learning disabilities and slow processing speed, but he is NOT Autistic. However, my older two are Autistic, and they can accomplish aspects of life which he can not, but he also can work around issues they cannot. My daughter has the co-condition of OCD Anxiety, and my eldest son has Dyslexia along with Autism.

Sometimes, parents mistake seizures for an Autistic trait when it is separate. Physical issues can go along with Autism, but many physical impairments are co-conditions. While it is true that it feels like our family lives at the Dentist, and we DO have weird, odd physical ailments and react to medications differently due to our different brain wiring, some of that can be attributed to the MTHFR gene that can also go along with Autism. Autism is different for each child, and it is important to remember that, as a famous quote says, “If you have met one Autistic child, then you have met ONE Autistic child.” Some will be sensory seeking while other children will try to avoid most sensory. Figure out your child’s preferences and read from other autistics about how to respect their journey!

Also remember that Autistics are not often age conscious. My children generally prefer to play with younger children or discuss with older adults. They often prefer to sit in with the adults, and that is perfectly ok.

To sum up, I would say to concentrate on education from other autistics, support their differences, and celebrate ALL that they are…the struggles, the gifts, and the ordinary…so they know they are worthy of being loved. I was very excited to explore your site as I think you are doing an excellent job of organizing a space for this. It encourages me and gives me hope for the future of my children.

KMarie often selects song lyrics at the end of her posts. Below are her choices for this interview:

You Have More Friends Than You Know – Glee

I hope each Autistic child and adult know that who they are is ok!

“Be brave. Be strong. You are loved. YOU BELONG. Some day soon, you will see, you’re exactly who you’re supposed to be. And you don’t have to go through this on your own. You’re NOT alone. You have more friends than you know. Some who surround you. Some you are destined to meet. You have more love in your life. Don’t let go. Give it time. Take it slow. Those who love you the most may need more time to grow. It’s going to be ok. You have more friends than you know.”- Glee 

“Be who you are. Learn to forgive. It’s not about who you love but how you live.”– Glee

The Wizard and I – Wicked. 

All the songs from Wicked hit my soul during my diagnosis, but these lyrics had me weeping From the Wizard and I “Did that really just happen? Have I actually understood?

"This weird quirk I try to suppress or hide- Is a talent that could help me meet the Wizard? If I make good, so I’ll make good. When I meet the Wizard, Once I prove my worth. And then I meet the Wizard
What I’ve waited for since: since birth! And with all his Wizard wisdom. By my looks, he won’t be blinded. Do you think the Wizard is dumb? Or, like Munchkins, so small-minded? No!
He’ll say to me, “I see who you truly are – A girl on whom I can rely!” And that’s how we’ll begin
The Wizard and I. Once I’m with the Wizard. My whole life will change ‘Cause once you’re with the Wizard. No one thinks you’re strange! No father is not proud of you. No sister acts ashamed. And all of Oz has to love you. When by the Wizard you’re acclaimed. And this gift – or this curse
I have inside. Maybe at last, I’ll know why. When we are hand in hand. The Wizard and I!” 

Often Autistics go through life trying to suppress quirks or feel like (at times) we have been cursed because we are so different, but to be celebrated? That is always a beautiful shock to us! When we are filled with hope that someone likes us FOR our differences – that’s amazing.

AUTISM INTERVIEW #97 PART 1: KMARIE ON THE BENEFITS OF KNOWING YOURSELF June 4, 2019Interviewsautistic identity, identity, Kmarie, music This is the first part in a two-part interview with Kmarie @ learnfromautistics.com

I participated in a two part interview at https://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

June 4, 2019Interviewsautistic identity, identity, Kmarie, music

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.”