Women like Me...We "Drown Oceans."

*This is a post for me on my birthday week. I dedicate this to the original blog girls and to Nyssa, Glynis, Sangha, Rachel, Kirstin, Hillary, Amy, Keren, Sara and Shelley O. You “drown oceans” - you are made in the image of the one whom IS- with grace there is beauty. Do not hide the light within- go light your world!” 

My husband often calls me a witch in the most flattering tone. The good kind like Galinda or Galadriel or the witches of lore.  He says it with reverence and slight believing, to the point I almost think that I am. I know he is sensing the muchness in me. He is seeing what most do not see, as I know he is using the basic definition of witch which simply means “ wise woman.” I know he is simply a beloved mirror giving insights to a greater Mirror. I know he is sensing the conflicts of culture, the definitions that can be paradoxical and that he is redeeming good what is thought of as contrary or negative.

 "Women like you drown oceans"- The first time I heard the Rupi Kaur quote it stuck to my bones. What did it mean? Why did it resonate? Instead of insulting the phrase pleased the type 4w5 (enneagram personality) heart.

 I hope I know how to contain my oceans to cause the least harm.

 I keep dreams coiled beneath my bones and passion flows through my blood like a river. He starves my fears and I feed his freedom. My mantra is to have the grace to accept all walks of life but this does not mean to accept abuse. This grace to accept is also for myself. I need to accept the beauty and grace given to me in order to accept it in others. I am in a messy state saved only by Grace given to all. 

My husband says I scare him a little in the best possible way. This humbles me. He says I remind him of  LIFE. What a complex statement! I appreciate that he does not take me for granted for the soul fire I sometimes am. Nor do I take his calming tonic for granted. He sees the fire in my eyes and instead of running or challenging he wants to play with it. I’ve been given my match.

 I accept my capability for darkness. I know my type of darkness and know what I can do. I do not feel my type of darkness is a threat but I do believe we all have capabilities inside our souls. I accept mine. To take an example from the T.V. series Once Upon a Time; This means that I am not a Snow White. I am more of a Season 3 Regina (the Evil Queen.) My husband often says while we watch, "She is you..."  And I am oddly flattered. I secretly hope so! (After season two of course and her redemptive balancing of light love.) I have been told I can be a force to be reckoned with. Sometimes I feel so vulnerable I don't think this could possibly true. However, I know that generally I will get past my feelings to do what is necessary.

Sensing the shadows and becoming part dark and light I feel rejected by the part of culture that embraces the lies and is believed by the masses. Yet, also I see beauty in them. I simply do not want to partake of it. I am a commotion, an ocean, waves upon waves of lavish water that can drown or quench. I often burn to brightly for this world. It can cause pain. I feel that sorrow. 

I know I am great on most days because I am Imago Dei which makes me great or “good” (after years of therapy and putting in the work of acknowledging this grace instead of trying to work for it by merit.) I have been shattered but this was simply because I am already beautifully broken. I break myself more than most and NO ONE can dish out the challenges I give myself. I need no one who tries to do this to me because I can be my own worst enemy. Aren’t we all similar in this regard? ? But I also should step up to be my greatest advocate after a long journey of being less than I should be. We are called to more.

I wrestle daily with disability. My paradoxes. My suffering gifts. Dealing with disability ever balances and softens the side that believes so much in my muchness. I know I am worthy and have fought years to believe in that. I have everything going for me and yet nothing at all...and in this I am free. For some reason this tempts people to interrupt my indwelling greatness. Why? Please Don't. We should all aspire and celebrate the goodness we all encompass at varying levels. 

"She is the phoenix who has risen from the ashes to which she has been reduced, this time wiser, stronger, and more powerful in her own right. She is the fire. Looking for someone to warm…to enlighten…but never to burn…she is a bird in flight, that one can only see if they believe in her…she cries tears that can heal wounded hearts, souls, and bodies in her rising she is cautious and aware of her own vulnerability yet still just as inquisitive and observant as she ever was ...she is a little dark and very mysterious. But will not omit truth and overlooks nothing. Contrary to the shallow minds of the world she is alive. She does exist. She is the phoenix and she has risen again…" K.W. G.

My hope is that I will stand my ground once I return to ash.  I wish to deal with pain like a Phoenix. I know I will crumble and be destroyed at first, but then I hope to rise more beautiful and stronger than before. From dust I was created and dust I will become but in the meantime I have been given LIFE. 

 I know I am ash. I also know I am beauty.

 Its probably true that mostly I live life on my own terms due to great privilege and freedom...yet it is also due to great heartache and choices. I am aware and ever grateful of this dichotomy. It's a humble sort of rising from my terrible depths to the beauty of my surfaces.

*Quote above by Warsan Shire*

 I'm something not everyone knows how to love. That used to be a knife in my soul. I have had moments where I thought it would be easier to disguise the brilliance in me...the brilliance each one of us owns but feels we should hide. I realized I can not make homes out of human beings...only a home for myself.  I have tried being "normal." I have dealt in depth with different religions, stances and perceptions of life that were not mine to be...and I found chains.

 I do not believe I am above anyone but I believe I am individualistic and free. I am, like everyone else, Imago Dei. We are all shades of this becoming. Being has a bit of grey. My own beauty does not diminish any other, but it IS my own to celebrate.

 In the past , without meaning to , I have broken the cage and possibly the person trying to cage me. When the metal strikes they may find themselves on the ground crumpled under the iron forced by their own hands. At other times, most times truthfully , the brokenness is brought on by my own cage that I must ask help to break. Why do I cage myself? Why do I try to cage others? Why do I allow others to cage me? With Imago Dei there is freedom - why don’t I grasp that mercy?

 I am worth it and I'm not afraid to be on my own. We each have a choice to stand up, grow up, show up or get up and leave. I try to allow people to leave. It's the ultimate belief in freedom. But I also ask of those I love to show up, grow up (but not out of childlike wonder- just grow up in boundaries and grace) or stand up. I ask of myself this the most.

Don’t we all long to be beautiful? In my story, when I am true to the Source, I think I proverbially drown oceans. I drown them not because I am but because I am part of the ultimate I Am. A mystical undergoing of drowning and coming out gloriously in tact. A baptism of encompassing beauty. I know I contain multitudes of paradoxes and ironies. I find myself in places not many who have been feel they can speak upon. A sacred sort of knowing.

Within all this, I know I am perfectly imperfect. This soul flies. This soul drowns. This soul IS. This soul is redeemed.  In disasters we find the rawest forms of simple beauty. We catch the fragile pieces and find hope spark.

I'm sun and rain and fire and ice: *http://www.lyricsfreak.com/g/garth+brooks/shes+every+woman_20058066.html

I’m in need of grace but modelled after the ultimate I AM. I’m full of mistakes that are covered by grace only … but for the parts that seem flawed? In weakness, we are often made whole. We can sparkle while atoning. I can BE.  I’m allowed to be quirky, become more, embrace my God given muchiness and music. 

Because of Grace my darkness sparkles. My love crackles. I wander off the edges of the world.

Song Choices:

Girl on Fire- Naya Riveria

*My husband dedicated the song 'Every Woman' By Garth Brooks to me:)but it's not on youtube due to copyright...so he said to put on Brad Paisley's' Everything' for this post:

My daughter suggested this song after I read this post out loud...my lovely little firecracker...For me this song is the opposite...I am a pearl but I used to be a shell of myself...allowing others to snuff out my light or say who I am is wrong. Then I woke up.:

Explaining Sensory Sickness and Halloween Sensory Overload in Children

Update 2021: six years later and sensory sickness has happened to me less and on a larger scale, on the rare occasion. Most times I only get to a cranky point when dressing up for short  periods which shows that processing the information in my own post below, and utilizing it created growth of perception for me to stay out of situations ( for the most part) that encourage this. It’s not all controllable and my brain still processes sensory information differently but I a more able, with my knowledge and my support team, to avoid most circumstances that cause sensory sickness. I still am surprised when sensory overload overtakes me often but I have a quicker turn around most days.  My children also have had less instances with time, awareness and techniques. This first step of putting words to the experience ( in this post) was part of our healing journey. We can now dress up in ways that are fun for us while minimizing discomfort on most days. I feel this post is important in explaining symptoms, causes, and  my processes can aid others in understanding those who seem off in sensory circumstances. Especially to caregivers  who may not understand what is happening to those who can not express their inner  thoughts and feelings ...

A BRIEF HISTORY

Every Halloween I forget I have sensory issues. For some reason logic is thrown out the window with my internal dialogue, "This year it will be different... I have come to know myself SO well that I will normalize perfectly." Yes, I am an idealist and unfortunately sometimes this transfers into idealizing my own life moments before they even happen.

Albert Einstein once said that insanity is doing the same thing over and over again yet expecting different results. With that in mind the last decade, we have done something extremely different each Halloween...yet the results are the same; sensory sickness for me. My husband says my sensory thresholds are lower than my children in some cases and Halloween is one example. My children have been sick seven out of ten years but I have been sick for every single one. One year I don't count because I was hospitalized with the Norovirus, which inspired my ritualistic love affair with my hand sanitizer, but every other year I have been sensory sick.

Sensory sick is an extension of sensory overload or can be combined with sensory overload. When a person who experiences sensory overload has spent a prolonged time in an environment that causes their body to react in a different manner than those who do not experience sensory overload would in the same situation it often leads to sensory sickness. It can involve any (or usually ALL) of the senses and is similar to a drug induced symptoms or manifestations. I have learned through therapy and life circumstances how to (somewhat) manage this. The odd time I will be completely taken off guard and not realize until way later what is happening. Unfortunately, the realization usually happens hours after an epic meltdown or alarming symptoms. Not all autistics experience sensory overload at high levels, but most have variations of sensory overload due to our various perceptions of the world.

My version of sensory sick comes with it's own set of complications. At first I feel great. I am costumed up and have enjoyed my prepping time to get to the point of being ready. I love dressing up. As a child all I played is make believe. Now I realize that is because I did not understand myself but KNEW I did not fit in. I imagined living in the early little house on the prairie days or the 1940's singing with Gene Kelly or dressing with Marilyn Monroe flair. I was always someone else. It was easier to mimic people I admired. A typical aspie girl desire to fit in is often accompanied by mimicking. This served me well in many cases but I never realized that the stomach pains and panic I would get later in the evening were BECAUSE of dressing up. My love affair caused as much pain as it gave joy. To this day I admire people who can go for prolonged periods of dressing up, wearing heels or make up or costumed in some bizarre statement without getting sick later. However, as a child and teen I DID have a longer tolerance for this sort of thing. In therapy I have learned how to not be sick every day of my life but I'm still me and the way my senses choose to interpret information to my body is often not appealing.

 HOW IT STARTS

About twenty minutes after I am in my outfit... I want to get out of it. Anything past  an hour is painful. I dress up because I enjoy the process of doing so, snap some pictures to remember all my effort, and then ideally I jump in the shower to wash it all off and get into sweats and a t-shirt. The problem is that most events I dress up for are not shorter than an hour. While I could go see Wicked in sweatpants and a T shirt...I don't want to. I take off my outfit the second we are out of the theatre and in our van. I love having a van because it has blacked out windows and I can change easily in the back which draws less attention (and germs) than a bathroom. I kick off heels for flip flops and push my seat back so I can semi lay down to take the pressure off my ever stressed out gut. Oh the glamourous life I lead.

In previous years for Halloween we have tried:
*Staying in to watch movies 
* Sending the kids with their dad 

*Attending an alternative dress up party at my best friends house (She was incredible and understood my early need to go home but a few others at the party were condescending about my seemingly lack of support for my best friend. I was very sick that night and my kids had meltdowns.)
* Dressing up to go out to eat and coming home
* Only going to my parents, grandparents and husband's parents and handing out treats for an hour after
* Only handing out treats
*Attending a murder mystery dinner
*Skipping town and heading to the city ( this was the worst idea ever...nothing is scarier to a home town aspie than a city on Halloween night:)
*Changing our diet (this helped a lot. We don't partake in any Halloween treats and my parents and grandparents make up a special care package for my kids of gluten free, sugar free snacks. I think this explains my kid's last two Halloween's without sickness.)
*Attending a Star Wars Identity forum (this was my only successful Halloween event- see post script)

While each of these scenarios had their fun moments, ALL except the last one, ended in sickness for me. I love Halloween simply for the fact that many aspects of it suit me. It suits my witchy side and the part of me that loves to play a role. It suits the rebel in me and the individualistic parts of my soul. It also suits the geeky obsessive parts of me that drool over superhero paraphernalia, cult fiction, and Star Wars outfits...I am the girl who kissed Vadar at a Star Wars event and leaked two tears when I watched the latest Star Wars trailer and Han Solo came on the screen. Yup, in that way Halloween suits me perfectly. I love the sparkly, happy decor part of it and despise the disgusting, bloody, scary aspect. I am a fluffy sort of Halloween person. I like the cute fake spiders and the bright orange pumpkins. As a child I was torn between being a princess or a witch...the princess won. Now as an adult I pick Bellatrix or Regina or something witchy. Yet, the concept is the same for me...I love Halloween because the 'freaks', 'geeks' and 'rebels' can be out and don't get flack for it. Halloween is also appealing to creative types. We love coming up with costumes around our home and doing the make up for it. We love decorating and the creativity and imagination it requires.

Other than Christmas, Halloween is my favourite holiday and thus it is my toughest (besides Christmas) because I see what I COULD be doing, enjoying or participating in...and I kind of want it. Yes, I have a fulfilling life and I have had many beautiful holidays...but just ONCE would I love to not have to go to bed early on Christmas Eve and savour more of the moment. Just ONCE would I love to dress up in a heavy costume and not feel the weight of it constantly or pay for it for days to come. My brain simply can not process the onslaught of information and takes hours to calm down. (At the time of publication, I read this to my daughter and at this point she yells, "ME TOO MOM!")

EXPLAINING SENSORY SICKNESS

Sensory sickness for me starts with a slight feeling of unexplained panic. At the time I do not attribute it to sensory stuff because my brain just does not work that way, despite being on that same road many times. It takes awhile to catch up. So instead I say comments to anyone around me like, "I think I may be coming down with something" or "Does anyone have the flu here because I may have just caught it?" or "I feel like something REALLY bad is gonna happen" or "I have to get out of here NOW." There is a distinct need to escape. I feel like I need to claw my way out of whatever get up I am in and make a run for it. Just in case my control ever snaps I wear cute little black shorts and a crop top under anything uncomfortable. It hasn't happened yet but I am prepared.

After this feeling of dread and panic comes the tingles down the arm, the numbness on my left side of my body and stomach clenching. The chills and a low grade fever follow. Yes, it is possible to get a fever with sensory sickness because the body is sending out the wrong messages to the brain to fight something that isn't even there. I start to shake and feel out of my body. I run to the toilet several times but nothing comes up yet. The only time something may come up is if I have left my body way beyond what it could handle. If I catch it in time or right around the time of panic and do not force it to endure longer I will not vomit or have the runs...but if I force a longer fortitude a full on stomach flu WILL happen. This is intense sensory sickness.

EARLY SYMPTOMS OF SENSORY SICKNESS OR OVERLOAD IN CHILDREN

*unexplained crying
*unexplained fit throwing
*a verbal fit
* kicking, screaming or hitting
* pulling or tugging at clothes
*staying silent or mute
*falling asleep in the middle of chaos
*shutdowns
*irritability
*inability to focus
*nervous movements of hands, drumming of feet, stimming anxiously to soothe, antagonizing those around, picking at skin, poking others
*running away or disappearing
*grabbing stomach
*curling up into a ball
*clinging to a parent
*disappearing to the bathroom

The pictures below are last year- We had a few little temper tantrums before the event...including my own:)

Not all of these signs will mean a full out sensory sickness but most will show that the child is having difficulty processing sensory information. Most of the time, if it is a light manifestation, the child needs time to adjust, explanations to aid them, and someone who can think outside the box to find a more comfortable way of participation if that is the goal. Also remember children should not always be forced to participate and this comes with it's own set of consequences - a post for another time. What is most important is a safe place to be and to hopefully avoid illness induced by sensory overload.

HOW TO HELP SENSORY SICKNESS BE SHORT LIVED 

The only solution to ease sensory sickness that I have found is a dark, quiet, comfortable, warm room and plenty of downtime or stimming for some children. Most of the time, this involves sleep if the ill affects are in advanced stages. Some children may need to twirl if it is their bodies that hurt but not their stomachs. For myself, stimming makes it worse due to the nausea. I need to lie still but I will rub my feet up against each other. My body will be unable to get warm. I will either have to sit in a hot shower or my husband will put at least four weighted blankets on me. I will shake until my body normalizes it's internal temperature. The shakes are violent and seizure like. Once my temperature is normalized then I can start to feel my muscles unwind which in turn helps my stomach stop twisting and my oesophagus stop triggering me into thinking I am going to vomit. This usually takes about half an hour. After that, I know I am in the clear for vomit or the runs which will happen after this time if my body does not regulate. After warming up, I just keep repeating a mantra in my mind. Usually it is "This will pass. You have done this before. You will wake up with a light sensory hangover but if you take it easy tomorrow you will be fine." I have to tell myself this over and over again. My body is betraying me. It is telling me that lights will hurt me and noises will cause vomit. My body tells me that it has a rash from the clothes or painful marks but it does not tell me accurately that these will go away. Instead it's alarm system is high. I have to combat this with my mantra, certain sleep positions, and deep breathing until I fall into a fitful sleep. I want to be alone for all of this yet I don't want to be alone. My solution for this is to have someone I trust (usually my husband) tuck me in, make sure I don't start vomiting, and leave me once I regulate a bit with the assurance that I will be checked on quietly every 20 minutes for the first hour until I am asleep. Once I am asleep he needs to come to bed and cuddle me so that when I inevitably wake up feeling crappy, his normalcy is beside me. I feel the heavy comfort of his arm around my body and I am able to go back to sleep. If this does not happen I can start the cycle all over again. I need a full sleep before I can conquer the cycle. If the room has a fan or any light I will not calm down no matter how much I try .The room feels like it does after a bomb...eerily weird, screechy and blurry.  It's how my brain is perceiving information.

If your child gets sensory sick they may act out. They may act aggressive or take off running or rip off their clothes. They can't explain what is happening...they just need to escape. I wrote in THIS post, "Often those with sensory overload can feel the overwhelming amounts of visual, auditory, tactile, and olfactory information that is coming from everyone in the room. Remember the last time you had a really bad flu? Picture yourself in your darkened room and suddenly someone turns on the light, another person comes in smelling like whatever you just threw up, someone else blasts some music that is high pitched, you hear talk of people who just died from the same flu you are fighting and you suddenly feel paranoid, your headache flares and someone decides that you will feel better if you are forced to walk around, finally someone comes and sits in your space and tries to talk to you while you are dealing with all of this. It sounds dramatic but that is often a typical moment for those of us who experience sensory overload in a large unfamiliar gathering with many factors involved."

CONCLUSION

Children may not be able to express how they feel with sensory overload or ill effects from sensory overload. You may think they simply came down with a flu or a weird bug. I am an adult with more than nine years of cognitive therapy behind me. I know the workings of the brain and try to read peer reviewed reading (and more importantly first hand experiences) and research. I KNOW what's happening to my body once I have time to clue in, yet I can not stop my worst episodes. If I can't do it- a child certainly can not be expected to STOP.

Children may feel a vast conflict of emotion. They probably want to be like the other kids. They want to have friends. They want to dress up sometimes or be a part of festivities. They may not want to do any of this but still want to be with their parents. Or they may have some combo of both. Some children need to still do "normal" events...but it should be THEIR choice with guided supports. Some children will only suffer minorly but it still affects the way they view the world in the future. It is important to help them recognize how they feel and what these feelings are from. I do not like it when people compare me to a normally wired person. For instance, "You are not really sick. No one gets sick from wearing the wrong outfit or partying. You are just overwhelmed. Take a minute and get yourself together. Behave appropriately."

This is wrong on so many levels. The fact is my body IS really sick. It is attacking itself. It is telling my brain I have a virus or bug which explains the flushing or low fevers or chills. I do not make this up to get attention because I hate attention when I feel vulnerable and I also am usually having fun when the panic starts to set in. 

However, what does help me is to normalize my situation...by normalizing I mean validating "MY normal." For instance, statements like, "You have been through this before, your body is reacting to the overload of information. Your body is doing an amazing job at what it knows how to do. I am sorry it causes you pain and let's try to do everything we can to minimize this so you can get back to your beautiful existence without as much trouble." Yea, I realize most people do not talk like that, but because of me, my husband, children and best friend DO say statements like that now. It can become a norm. Sometimes we need someone to simply sing us home. Home is an important concept for those who suffer sensory issues because it is the one place we have control. See THIS post. It's important to celebrate the ordinary moments and obsessions we have that give us joy because we will also inevitably have moments of complete sensory chaos. Despite being different, we need to feel safe and like we can at least belong where we live. Celebrate us home.

Have you experienced sensory sickness? What helps you?

Song Choice: Celebrate Me Home- Kenny Loggins

Post Script: My only successful Halloween event was this a couple years ago.

 Before we went in, we spotted R2D2. (For some reason my brother took these at a weird angle. (R2D2 could walk, and make the same sounds as in the movie...

In the above picture I jumped and was surprised because his face turned around to look at me...

 Then he surprised me with a whistle. (Picture below) A Cat Call whistle...and I died laughing along with all the other spectators. I patted him on the head and said, "You have always been my favourite. Now I know why." When I watched my first installment of the Original  Star Wars in grade five, I would have been ecstatic to know that R2D2 would one day whistle at me.lol