Thursday, June 29, 2017

PART:2 The Behind The Scenes Story of Being An Autistic Parent to an Autistic Child.

Let me preface with the fact that this is a follow up to THIS (CLICK) post. I also have another child who is autistic but they are pretty much a mellower version of me. They also have a natural ENFJ Mother Teresa sort of personality so they end up being probably the more stable presence in the household on most days. They also fall through the cracks sometimes because they are the most balanced. My point in mentioning this is to show that each situation is unique and sometimes parenting an Autistic child is easier, depending on all the varied factors. The ENFJ struggles are more involved in severe anxiety issues and feeling a general sense of "nerdy quirkiness" in the outer world, but they feel completely comfortable at home, with me, which makes life at home infinitely easier.

Birth order also plays a part as well as gender. There are MANY factors that play into all of this. I also could write another post about being a Dyspraxic parent to a Dyspraxic child which is a whole other ballgame. I find it something I can handle on most days, oddly, because Dyspraxia is actually more of struggle for me in the day to day disabilities. It is also probably because our dyspraxic child is a marshmallow of kindness, so it may be easier for me to help out? (Another post for another time.) I also want to state I adore ALL my children. I like parenting most days and unschooling for the most part. But sometimes it gets to be a little much. I am going to focus on those times below. I am also going to write like I talk when I am in heightened states of awareness and before I edit. Which means my post may take tangents and show some of my quirky tendencies more than usual. I am doing this for my fellow Autistics who parent autistic children. I want them to know that I DO have autistic traits and I DO struggle in varied ways...and I hope this can help in some way...And yes those dark circles have three layers of make up and are still showing...

I didn't tell you what I did while my Z's timer was on 15 minutes, before I went to check on Z. I ranted while I paced the house, I crouched in a corner, I tried to call my main three supports in the order I prefer to find them; Husband, Best Kindred, and Mother. When no one answered I ended up ranting a text message to Hubby about single parenting most of the year and how I am literally going to break into pieces of a fragmented self. Yes, he tends to chuckle at these texts with me in hindsight later but at the time I am very serious about quitting my entire life and becoming an Ostrich. Apparently, I am funny when I am distressed. Part of it is a coping mechanism. But yes, you heard right, I said an Ostrich. I will often picture myself as an Ostrich, imagining the joyous bliss of burying my head in warm, enveloping sand. Writing it out, I realize it's actually not that comforting of an image. Things I hold on to for years can seem different when I write them out, and suddenly I am realizing that this being an Ostrich is actually not appealing at all. Maybe I should change the image to something that will explain the feelings I had because it's actually a terrible image!

I didn't think the Ostrich theory through... Ok, the feelings I had when thinking of being an Ostrich are probably similar to picturing oneself in a cocoon of quick safety, able to escape the world at large with a quick action. Maybe I should have used a mouse burrowing into a cozy home but I dislike disease carriers so maybe a ...hhmmmm what animal doesn't carry disease?... I've got it! A HOBBIT! It's not an animal but it's not exactly human either. Yes, that is way better. I will picture myself a Hobbit, shutting myself into my Hobbit hole and bolting the bright yellow door, sitting by the fire and eating bits of yummy cheese, fruit and meat while sipping on comforting tea. That feeling right there is what I felt also when I was an Ostrich. That borrowing under ground sort of thing which a Hobbit does nicely at conveying. 

Anyway, when the timer was up, I quickly rubbed my eyes, took a few deep breathes and did what I do when I am not safe enough to meltdown in places- I go into trauma emergency mode. I shut off. I shut down. I tell myself that I will process and feel the emotions later but that my child requires my unemotional attention. This means that later I am going to be a mess, but for the time being I am the perfect little robot. I can pretend to be in good humour, I can smile even though it doesn't reach my soul, and most importantly, I can get through the motions. Once I put on this pretend body armour of metal technology on, I walk into the room and press parent mode on my inner psyche. 

Next, I monologue. Monologuing is an important part of this equation because when I monologue I am in writing mode. My children know not to interrupt mommy when she is writing or monologuing. I will SNAP. If I am going to be harsh, it will be when I am interrupted in these two activities. Why? Because I am in FLOW, I am getting words and thoughts out that I normally have trouble expressing. The words that get stuck for days, that I know I am feeling but can't fully explain until the computer is in front of me, or I am in a verbal monologue flow triggered by some great insight, are suddenly there and I need to get them out. This is why I talk to my best kindred a lot on the phone. I hate the phone otherwise but with her, someone who is insanely like me but an INTJ, we both take turns monologuing and processing all of our thoughts on past, present and future. She is my sanity and also the reason why I tend to function at a higher level when I struggle...because I was able to express it to someone, on my own time, over two hours of phone time, and know if I need to talk some more I can call her again. It feels safe. 

When I snap, I am harsh. I use harsh tones and say quick cutting remarks like, "Get out of my space or you will forever regret that you walked in my door." or "I don't care what you eat or what you do right now children, just LEAVE ME ALONE!" or the simple, "GET OUT. We will talk later unless it is a dire emergency...." followed with an apparent death glare I have that works efficiently most of the time. My children love it generally when I write or talk to my Kindred because it means they can rule the house...My husband also knows not to interrupt when I write. He has not always applied this learning when I am monologuing but my distressed sounds or close to tear responses, if he does interrupt a monologue, is enough to shut him up for at least the twenty minutes of speaking I need to feel "normal" again. Truthfully, it usually takes closer to an hour...

This monologue ish way of mine serves me well in crisis situations with my children when I am expected to have a game plan. I have NO IDEA what the game plan is going into a situation. I did not know I was going to give my son three letters to write until I was halfway through my monologue about the situation. It's kind of like the Internet. I am talking but I am accessing all the stored information in my brain pertinent to the situation. In this case it was parenting books I had read, triggers from posts about autism, stuff I have written, and general movies I have emulated that all came together to focus me on what I wished to convey. I am often proud of myself after these moments because I DO tend to randomly parent effectively.

Unfortunately, this isn't always the case. If I get interrupted or if I'm over tired or sick, I can't monologue. Which means, I will not be effective at communicating what needs to happen... Sometimes my children will literally be dealt with a FULL WEEK after an incident. Once I have processed effectively, come up with a plan and maybe been triggered into thinking about the incident again, I will seemingly out of nowhere suddenly "deal" with the situation. This causes some confusion though they say they are used to mommy's random musings, lectures, and out of the moment game plans. There is usually a collective "Uh Oh" when I utter the words, "Here is the deal..."

Yesterday there was another incident. I ended up actually sliding my child across the floor in their slippery socks, by force to my mother's room. I was lucky we were there and also that the floor was slick hardwood because my child is WAY stronger than me. I was DONE. I had done a favour for said child, and they were mad because I brought a book, just in case they wanted to read, from our house while they were being looked after. The book was thrown across the floor with, "I told you NOT to bring my book. I told you I am not going to read. Now I am not going to read that book EVER again. You are a horrible parent. You don't listen..." rant, rant, rant. I was tired. I was on my way out the door to spend the day with my husband and ENFJ child in another city. So, after squelching my great urge to smack the child- which I NEVER do by the way, but I have to be honest and say that the thought does seem tempting at times, I firmly said, "Ok let's go talk to Nanna. I can't handle this today." To which the child fought me so I dragged them by their sleeves across the floor to the room because my mother was not responding to my calls. Yup, not my best moment. The child was not hurt and in another circumstance they probably would have had fun sliding across the floor in socked feet. 

My mother mediated right away and immediately my child stopped physically fighting me, but the defiance was a whole other matter.  She explained that they were not the boss. Something I am uncomfortable with as I don't like being the boss or pulling any authority cards in general. I am a guide as a parent but I like to give my children freedom and equality whenever I can. Probably why my child thinks they do run the house...downsides and benefits to everything I suppose. SO I cringed at that statement but let her go on. The child interrupted with, "I said NO to her before. I said NO. She should have listened. It is MY book and MY brain and I don't want to read." To which my mother replied, "Sometimes parents get to choose activities for you that they know you will benefit from. I asked your mother to go home and get the book for you to have just in case. She went out of her way to grab it and it's simply an option. You should tell her thank you and let her go. You also need to say sorry for what you have said to her..." The discussion went on for ten minutes and blatant refusals to say sorry. I ended up leaving because I was fighting back tears and the child was clearly not in a mood to communicate. I left them in my mother's capable hands, muttered the obligatory leaving the house to go on the road, 'I love you,' and left.

My mom's texting conversation lasted the first ten minutes of the drive, and then my ENFJ child and husband had to hear my monologue for the last 45 minutes. That is how long I took to begin to "normalize" and not be in a heightened state of emotion. An HOUR. Even then, it takes all my self control to stuff it when my other child says, "Ok mom. It's time to move on. Z is not here. Let's enjoy our day and you can think about it later." Point taken.

Here is a snippet of my mother's texts:
Me: I've fantasized about boarding school so much lately . Z breaks me every day. Every day since January. I think Z can be ok sometimes but not usually with me ...
Mom/ S:
You've had good days too.  Remember when it's hard that you are seeing things through your autistic eyes and it seems it's always hard.Those are the times when you forget all the positive and good.Boarding school would break Z.  Z is ok with you too.This will pass and you will get through it.  However, it is also why you need breaks sometimes. Those times can even be Hubby taking the time when he's home to be with and talk to Z about growing up, respecting  mom and women in general, respecting those in authority, etc. all while spending time doing something with Z.  Sometimes with the other kids but sometimes one on one.. at a difficult age, starting to become a grown up yet still a child. Changes in body, emotions, etc. Those all affect more because of the autism.  You will get through this. You can do this. And you are doing this. Sometimes you may not always respond in the best way but overall, you're doing it with grace and beauty. You have a lot of that, you just forget sometimes when you're overwhelmed.

Remember, you are a great mom, you're doing a good job and you're entitled to times of frustration and breaks away.  You need that. All of us moms have times when we wish we had responded differently or we wish we could take back some words we allowed to escape but the good thing is that we are human. We recognize that we don't always have all the answers but we plod on doing the best we can. With you, the best you can is a pretty darn good job. So take a deep breath, enjoy your time away knowing Z is safe, you can relax and you don't even have to think about the issues that arise. You just have you time. What I meant to say was the good thing is our kids are pretty forgiving, they're not as fragile as we think and it doesn't hurt them to have time away.  It also doesn't hurt them to see how their words and actions can hurt and frustrate their parents and others as well.  That's how they learn."

Her support helped the situation but I needed more processing time. That night, after a long day, Z came up the stairs and apologized for being unkind. Then Z started arguing with me again about why Z was right and I smiled and said, "Let's just drop it for now. I'm sure you have points but that would defeat the moment of peace right now. I actually was just bringing it as an option and not requiring you to read it but for you it's about the fact that I dared to bring it out of the house at all. It's bed time kiddo. I love you and you are special."

And then I stayed up till four in the morning stressing about life. You think I'd just take the apology and sleep peacefully but NOPE. I wrote on a safe place I have with a few close friends, " I don't know how to be a mom anymore to one of my children. Sometimes I don't even know how to be a person. Actually, generally I feel I don't know how to person properly. I can't sleep or eat right, talk appropriately or posture correctly nor do I express normally or act accordingly or normalize to the masses. Some days I celebrate this alien status. At nights I tend to torture myself with them. But really, I know when I feel empty that I'm fighting burn out, sleep depravity or depression ... and I fight every day for perspective that I think I'm good at and also gratitude but that doesn't change the fact that on some days or nights ... I don't know how to be a person ..."

That is how I have felt lately. I don't know how to be a person. Of course, I received some lovely support from a core group of ladies which I will leave in the comments below because their wisdom is crucial to my well being and I believe it may benefit some readers who struggle with the same issues. Because sometimes, the inner dialogue in our heads can be created by the outer world. My blog is called the World We Create from that sociological concept. We create in part what is around and in us...what we adhere to and what we choose not to do...we also sometimes are innocent bystanders or victims of circumstance but in everything there is a bit of ability to be our own change. Most of the time anyway. Not all of the time. I have no complete answers today. I still feel like I don't know how to be a person. But I wanted to write out my experience behind the scenes, to show that these struggles can come with even parenting milestones. I said most of the "right" things when dealing with Z last week. I often will come up with great game plans...only to face the same situation again and again. It's part of life. In disability and in ability. I wanted to show that side of angst even amongst victory.

Not feeling like a person or knowing how to be another matter for another post or maybe I will forgo that one all together and deal with it on my own or in therapy...Dear therapist, when you read this remember it for our always growing list. Ha ha. Anyway, I have some moments to celebrate and I am grateful. I love my life and the comments will show other aspects of the equation once I get them transferred do read them for other's wisdom... But it also is a glorious mess. A tough struggle in the midst of wonder and beauty. Alice in wonderland. Complex and full of dangers and mystery but also fantastical experiences and forever friendships and smoking caterpillars. Yup, my life. Also, the song choices complete this post so do scroll below for explanations.

Song Choice: When I was defeated after one of these moments I put three songs on repeat to a few silent tears. The songs were:

Blackbird sung by Sara Mclachlan (CLICK) "Take these sunken eyes and learn to see...Blackbird fly until the light of a dark, black night. Blackbird singing in the dead of night, take these broken wings and learn to fly...." I feel like my eyes are sunken most of the time lately and I am the blackbird in the dead of night hoping to learn to fly again. And I know this is my life to be broken, learn to fly, and break all over again...I think we all have this in a way and people with disabilities or minorities may feel it more acutely.

Landslide by Fleetwood Mac (Click) This song I cried the most on because the lyrics are SO accurate. "I took my love and took it down. Climbed a mountain and I turned around. And I saw my reflection in the snow covered hills till the landslide brought me down. Oh mirror in the sky what is love? Can the child in my heart rise above? Can I sail through the changing ocean tides. Can I handle the seasons of my life? ... Well, I've been afraid of changing because I built my life around you. But time makes you bolder even children get older, and I'm getting older too. Took my love and I took it down..." These lyrics are exactly how I feel in poetic terms. Can the child in my heart rise above? A question I constantly ask my child life self. Can I handle the seasons of my life? Aspies especially struggle with change and this lyric inspires both fear and comfort in me. If a musician asks it- I can ask it. "Even children get older..." A reminder that this too shall pass and I will miss most of it. In fact, I can't think of it ending or I feel like I am suffocating. I adore my children even when it's tough. "I'm getting older too..." I felt this lyric when I was 19. Sometimes I feel SO OLD. Being an Aspie is an odd mix of Old soul and Child forever. Sometimes the old soul and the chronic illness makes me feel an age that does not even exist...Maybe it does in Elf years...

And Hey Jude by the Beatles (Click HERE) "...Remember to let her into your heart. Then you can start. To make it better... Hey Jude, Don't make it bad. Take a sad song and make it better. Hey Jude, Don't be afraid, You were made to go out and get her. The minute you let her under your skin then you begin to make it better. And anytime you feel the pain, Hey jude, refrain. Don't carry the world upon your shoulder. For well you know, that it's a fool, who plays it cool, by making his world a little colder..." I have always been comforted by this song since my obsession with the Beatles in Junior High. Heck, the Beatles and Lennon (and Elvis) got me through Junior high! This song in particular has showed up every time I have struggled with someone else. It is my reminder to step back and let the pain and the person into my heart in some way or form. Because then I can start to heal and get better. I also find the lyrics about the fool who plays it cool comforting because I will NEVER be a person who can be "cool and collected." I am passionate and moody... and this song always made me feel better about my odd, sensitive self. I often think that part of my processing is to allow myself to feel so deeply and to express that into the world the way I know how...which is usually writing. Taking a sad song and trying to make it a little better... "Don't carry the world upon your shoulder little miss INFJ" ( that is what I say to myself because I have a tendency to do this when I don't implement boundaries.)

Tuesday, June 27, 2017

Being An Autistic Parent to An Autistic Child- The Surprising Miscommunication that Happens even WITH Understanding, Meltdowns and Executive Functioning Issues

To keep this child's identity anonymous to those who may not know whom it is, I am using the verb THEY when referring to them to keep gender neutral and I will use the random initial Z in place of a name for the use of this post. I also will admit that if I would have written this post after an incident it would be a lot more emotional which is why I waited. I have struggled with this aspect of life sometimes on a different level and I am beyond exhausted, however, I wanted this post to reflect more of the facts, actual outcome and words involved and brainstorming for hopeful help to others in similar circumstances. I also wanted it to benefit Z by giving the most fair assessment without my feelings of frustration or upset, while still being honest about my struggles also. I hope I achieved that goal.

One of my children is particularly verbal. They have been since month nine of their existence. Sometimes because of this factor, they seem more able. They seem wise beyond years at times, and sometimes they really are. An old soul. But in life there is always a double side, and with this verbal prowess comes the tendency for those around Z to think Z can handle more than they can. Myself included.

I try to remember that Z may sound old, but has the same struggles I do, in varied ways. I try to remember that their pre frontal cortex is still developing at their age, so even if they sound like a grown up, they may still struggle with accessing their reasoning side of their brain in a more grown up way. Z thinks because their arguments sound good, that they must be mature, but sometimes they clearly forget about putting relationships BEFORE issues, with important people in their life.

Z has a way with words. They can both heal and wound. Unfortunately, because of age, meltdown mode, sensory issues, and OCD anxiety, Z utilizes their words first hand. Often it can be brutally raw and sometimes cruel. Z, like their mother, knows how to cut to the heart of the matter and see things in people they do not see in themselves. But Z's delivery does not have the maturity of restraint. Z knows  Z has partial truths but does not realize yet that there is always another aspect of the equation.

Since January Z has had three full peaceful days where there was not some sort of incident. To say that our life has been full is an understatement. But there is a reason for this that we all understand. To date, this has been the toughest year of Z's young life. Z may be a quicker processor in some things, but emotions take more sorting out. Chaos is not welcomed and creates distress in their brain. I understand this because it's my life story too. I am constantly applying understanding of my brain to their brain. However, even being an Autistic myself, and applying this knowledge, we end up mis communicating. Z has had the toughest time with me this year. Partially because I am a safe source for Z to act out against. A mother's love and all that.

Last week we had a breakthrough. It was after a yogourt container was thrown across the room when Z was mad at a trivial change in plans, and it exploded all over the kitchen. Z was beyond control at that point so there was screaming, hurtful words thrown all over anyone who was in the room, and finally a running down the stairs and slamming the door of Z's room with the sound of the lock click as I followed quickly behind to make sure Z was safe. The screaming probably disturbed the neighbours this time...For myself this is also very hard because screaming insults my sensory needs as an Autistic. A normal mom would be bothered but for myself, it triggers my crisis center and it takes all my self control not to meltdown myself. In the past, I will admit, that there have been about four times when I have started to simply cry or plug my ears and yell over the noise for Z to go to a safe place to scream. Generally, I try to keep it together until after but my face flushes and my heart rate is high.

This time I was extremely distressed. I called my husband at work because often Z will not come out for hours and may spend them all screaming. My husband and sometimes mother are often the only ones who can cut this time down by force. I can't. Maybe because I understand and also partially because my mother and husband are NOT autistic so they come to the situation with another perspective. Sometimes I need to do damage control for some expectations of behaviour I know can not be met during meltdown that are expected from non autistic individuals. I have to mediate, but generally, because of my education, they understand Z too and mostly are in tune with what Z requires in these moments.

My husband was unavailable so I was on my own. I took a few deep breathes, stopped my teary eyes from thinking about the words that were spoken to my soul, and reminded myself that I was the adult with a bit more regulation. I knocked on the door and said loudly over Z's noise, "You can have 15 minutes to finish melting down but then you must unlock this door and once you get to a point of calm we need to talk." I timed the 15 minutes and came back to a calmer Z. They surprised me by unlocking the door right away and running to the bed to put their head under the covers. This was a big step that I did not have to wait for my husband to force the lock. I sat down and said calmly, " I understand that you were triggered into meltdown. You were distressed about the small change in plans and I should have seen the signs that this would bother you more today. However, while I understand your behaviour, I also am unfortunately both your teacher and parent. Some behaviours you would be expected to learn at school are skipped at home. I need you to learn some regulation for not just others safety but for your own. I know you can understand what I am about to say but I want you to ask any questions if you do not. Here is the deal. In grown up life, our goal is to enable you to have a safe life the way you wish to live it. But in grown up life, if you are working and you break something, you have to offer to pay for it and clean it up."

At that point Z said, "I know, I already thought to offer to pay for the yogourt." I replied with, "Good. I am proud of you for that. And it was a full container. It can come out of your allowance because this is an important lesson to remember. You will also be cleaning it up though your sibling cleaned up most whilst crying. The things that were said to both me and your siblings were not exactly kind. I know you didn't mean half of them and some of them were probably half true, but the delivery needs work. On top of the natural consequences of life, where as you make a mess, even accidental, you are required to offer to pay for it and clean it up even if the other person let's you off the hook - you still offer, but besides those consequences, I will be giving you an additional one to fit the crime. Here is the deal- you used an object and just missed your sibling. You grabbed the closest thing in front of you. What if that would have been a hammer or a knife or some sort of weapon? In your haste you could have done something that you would forever regret. I know you. I know you have one of the sweetest hearts in the world but you need to learn regulation. There are people in the justice system or jails that do not deserve to be there. That did nothing out of malicious intent but out of lack of control. I know you would never suit a place like that- it would kill your soul. Part of my job is to teach you how to regulate enough to be able to avoid situations like that. Unfortunately, the world is full of small minded people with enough power to make your life a living hell. You need to keep your inner circle safe. I'm not saying this to scare you but because I think you are wise enough to realize that as you get older, you will need to be aware of your emotions and control if you can. I am not saying you have to stop melting down. I still meltdown. I am saying you have to learn safer ways or places of doing this."

Z replied with sobs breathing of, "That makes sense I guess. I was soooo upset. I still am."

"I know honey and I am SOOOO proud of you for unlocking this door and letting me talk to you so soon after you were upset. This shows how your regulation is actually a source you can use. More than the physical, you also used the emotional and said things that maybe should not have been said. Hurtful borderline cruel things because of a change in schedule. I understand that this was more than a change in schedule to you. I understand this year has been so hard on your little soul and you are still processing...but we also, if we can manage to understand this much, have to understand or at least be aware of what words can do. Words can heal or hurt. It's ok to use them to wound sometimes. It's also ok to be human and make mistakes. Words sometimes will cause a change that is good even if they hurt at first. But try to remember to say them also with some restraint at times. Try to also say the good. With that in mind, I have come up with the consequence I think fits this situation. You will write three letters to three different people. Anyone you wish with any subject you wish. They can be as short as two sentences. I would prefer them to be towards someone you think may need some encouragement or gratitude but if you can't think of that, even your siblings are fine. I will give you a full week to do this but I want you to see the power of your words when they are also used for good. I think it will make you feel good as well as others."

"The thing is sweetie that you have a writer's soul. You are not a bad person. You are not even fully in the wrong here. You basically just have a little bit to do we all. Heck, sometimes I respond completely wrong. My regulation after thirty plus years and 12 years of therapy still isn't up to speed at times! SO you are actually doing pretty good! But this is a situation, as not only your mom but your teacher, that I am required to somewhat address. And you know what I think? I think it is neither good nor bad but neutral. I think you have a writer's rebellious soul! Which means that you can be a great change maker or a creative thinker or a natural society challenger. Your words can end up making the world a better or easier place for someone out there. And also yourself. The first thing a writer changes is themselves. Writing is healing for those who have it as their gift. I have seen your lyrics- they are better than some I have heard on the radio and you are less than half the age of those writers. You can cut to the heart of the matter if you wish. So in this regard, I look at the words you just yelled at all of us upstairs, and I see a lot of creativity, some truth and a bit of exaggeration. Not in a bad way per se. Your exaggeration was true to your heightened experience at that time. It was your truth but you need to remember it may not be your audiences' truth. I was hurt. So were your siblings but we also know deep down that you didn't mean all of it or your delivery of it and we are ready to move on. Now, I have given way too much information for your developing brain to chew on so I will give you half an hour of quiet time before I require you to come finish cleaning up the yogourt...if it dries it will just require more water....see you in a bit and I love who you are."

Then I went to my room, took some stabilizing breaths and let a couple tears fall. I can not touch Z even for a light hug, when Z is in these moods. It would feel like an intrusion. They will hug me usually hours later. I have to wait for them but as a mom, sometimes that is hard.

I wish I could say the next day went a lot better because of our conversation. The rest of the day went well. Z did remember aspects of our conversation. But it has been two weeks since that meltdown and though they have been less violent, we have had every day incidences since. However, I see that Z is wearing winter socks, pants and sweaters in plus 25 Celsius heat. This tells me that Z is in a OCD anxiety phase. Everything feels like a threat to them. They are on high alert. Most days I let the meltdowns take their course and carry on. I also sometimes ignore them when I am terribly tired. I am not mother of the year.

The other night I was wracking my brain trying to figure out what I was missing...I still felt like Z and I were mis-communicating on some crucial level. Then I read THIS and felt a shock at, " I feel their frustration at being expected to conform to a standard of normality that is unattainable. I get that they are tired of trying to communicate and being unheard day in and day out over and over again. I know that it is soul destroying to be forced to comply with instructions you don’t understand the reason for or the actual steps that need to be taken in order to comply. See, the reason autistic kids are seen to be a problem is that they don’t comply. They can’t comply."

Oh my word!!! Was I being like all the people who have misunderstood me??? Was I suddenly akin to the teachers in this regard to my own child? Was I expecting a level of conformity that may be unattainable? IS Z communicating and being unheard? AM I HEARING Z?  This made me pause for quite awhile and triggered a memory of a four part post I had read from Musings of an Aspie on Executive Functioning. I went straight to the article and read all four parts ( FOUND HERE.) Then I read them to Z.

This is when we had the major breakthrough. I realized that the areas I mainly struggle in Executive Functioning are generally stronger areas for Z like Memory, Planning, Organization and Attention. But the areas I am generally stronger in are weaker areas for Z like Inhibition, Problem Solving, Cognitive Flexibility and Monitoring. Of course we will both struggle in all of them depending on how uncomfortable we are in a situation. At home, where we feel safest, we will have our strength areas.

 For some reason, because Z is so good at planning and organization I missed that their executive functioning was misfiring. I assumed they were just better in this area than I. Add the INTJ personality type into it, which is good at planning and organization but quite rigid in beliefs and thoughts even if it is a intellectual and researching brain mode, and we had a recipe for extreme inability for flexibility...especially at Z's age level. Finally, we found another layer to the issue. Z understood most of the four parts of executive functioning and we had a great conversation about the material.  A few days later Z melted down at another change in plans but it was a small meltdown. I was able to actually say, "Look I'm sorry. Remember that EF article? Remember that my weaker areas are planning and organization? I am not going to be the stability you crave in schedules. I try because I am the adult and your mom and a teacher...but I'm also HUMAN. That means I will make mistakes that WILL affect you. I am sorry this affects you so much. It's an area I work on but it's also a disability which means that I will NEVER fully get it and should not be expected to. I will try where I can try and that's all I can promise you. You need to have grace for me and I need to have grace for you. I'm sorry. Also add my INFJ bohemian personality type and I WILL rub you wrong in this area at times, but I am also a good match for you if we can work together. We both have opposite areas of strength and weaknesses but we are also perspective taking personalities. This is where we both agree. We are future orientated and enjoy literature and wisdom. IF we focus on what we DO agree on and try to work with what we don't and allow for each other's disabilities, do you think we can find a way to navigate at least maybe two days a week in peace?"

Z was quiet during my whole monologue. I am lucky my kids sit through and understand most of my long communications. I also do not talk to them on a child level so I am also lucky that they try to understand some of the words I use. Z responded with a hug. A HUG! I tried not to weep or make a big deal of it. I tightly hugged Z back then let Z go with a light smile and, "Ok, since I changed the day what is one activity you can't live without? What made you upset? Let's see if we can work it in somehow and meet in the middle..."

 Being an Autistic parent to an Autistic child or children in my case, though there are massive differences in gender, personality ect., can be both easier because of understanding and tougher because of the same understanding. I think in general it gives me an advantage with my children, but there are times when, if I am in sensory overload or EF fail myself, that it requires even more for me than I can sometimes give. Every night I go to bed thinking of how I can do better or where I went wrong. I am learning to let this go and remind myself the same thoughts that I told my son...I am HUMAN. I am not Wonder Woman, no matter how much I desire to be so. I am not and should not expect levels of perfection from myself or from anyone else. It starts inside. It starts with my willingness to accept my own disabilities and flaws and normal human frailties....and then I can go on to celebrate my strengths, my beautiful messiness and my gorgeous quirky moments. This is always what I end up going to sleep with. Then I wake up and try all over again.

Oh and here are the beautiful notes we ended up with that Z thought up without any help. Z is behind  on the actual physical act of writing on paper (dysgraphia) but typing on the computer Z can sound like an adult with their Lyrics which unfortunately I am not allowed to share but here are the notes. Z picked three adults that had a tough year too. Auntie D has stage 4 cancer- she wept when my mother sent her a picture of the card and said " Mom told me to look at my iPad cause I haven't been on.. brucie and I are weeping! You tell auntie Donna is fighting hard and that is is the most beautiful card I ever got in my life! And tell Z it has lifted my heart and soul to the heavens 💝💖💞🌹💕❤️💜🌺Tell all 3 how very much I love them".  I told Z to enjoy the beauty the words created in another person. Grampy just lost his wife last year. Nanna's sister and mother got diagnosed with cancer. Z came up with thinking of each of them. I also did not correct any spelling or grammar mistakes because this was about heart this time and Z wished to be alone to write without any guidance.:
Above: "Dear Nanna; Thank you for buying us groceries and letting us sleep over at your house. You are the best Nana I could ask for. I hope you are doing Ok. Love Z"

"Dear Auntie Donna: I love you Auntie Donna. You're such a fighter. I hope I become just as much of a fighter when I grow up. You are such a good example to be strong. Love Z."

"Dear Grampy: I love you Grampy. You are such a brave and strong person. Especially considering the last year. I love the suppers we have shared through the last months and the board games we play. I love you Grampy and I hope the next few years are easier. Love Z."

I was misty eyed reading them. This child, like all children, is so complex, layered and beautiful. I am honoured to help guide when I can and witness what I am here to witness.

Also a reminder. AUTISM DOES NOT CAUSE VIOLENCE. Read this for more:

Song Choice: James Morrison- I won't let You Go ( On a personal note I watch this video every time I am depressed and see myself lying on the road with those I know love me and it brings so much comfort;
Love Hurts- James Morrison

I also wrote a follow up post to this HERE:

Thursday, June 8, 2017

Theatre Paranoia, Affecting others by being Different, A Personal Sensory Story, The Struggle to Show Up as An Autistic Woman, Sensory PTSD

I struggle with being in theatres and large public places. Especially with the current culture and news of the world in the last decade. Long before, in the time of my childhood, sensory overload would happen anytime I was in these circumstances, but we didn't understand what was happening. My parents and I would mistake the sensory assault for the flu, behavioural problems, IBS or any other number of conditions.

Large crowds equal numerous uncontrolled aspects including strange, pungent odours, loud unexpected noises, expected social norms, bright florescent lights, confined spaces, inability for quick escape ect. I was born with an old soul. I was born intuitive with my sensory aspect already a weak link. Couple this fact with autism wiring and most "normal" experiences have always been brutal on my system.

I have always believed something bad could happen in a theatre, and then it did, and my paranoia was tripled. I fight panic from the moment I step into the loud, dark, contained space. My therapist told me years ago that I did not need to attend theatres as part of my lifestyle and I could find ways to avoid the place, but our extended and core family are very media orientated, which makes this a little bit tougher. I already avoid so many circumstances and activities. Luckily, in today's age, there is more access online to media which makes it easier. Generally, I do avoid but sometimes I choose to go.

Wonder Woman was my recent choice. I felt the strength to go last minute and decided to make it work. Unfortunately, my experience was doomed from the beginning because as we were sitting down, a man walked in with a backpack. Every visual scenario I had seen in life and movies of bad situations with backpacks flashed through my mind. Every time I am in a theatre, I watch every single person who walks in and out. It did not help that there were also a few large, burly men who became increasingly drunk the entire time, were loud, and kept running in and out of the room. This put my high alert system on advanced alert.

I try not to let my conscious awareness of everything around me show outwardly. My husband didn't even know I was in my borderline panic mode. It did not help that the theatre was colder than usual, even though I brought a sweater. I honestly would pay a double theatre price to watch an opening movie inside my home. I don't understand why this is not an option for those with higher needs.

had about four full fledged panic attacks from the time we sat down to when we exited the building. Two were almost bad enough that I was picturing myself getting up and going out to...where? That is when I often stop myself. Where would I go? I would feel just as paranoid in the closed off bathroom. I would feel vulnerable outside the theatre and most places are closed nearby. Being alone is worse. I also do not relish forcing someone out of a movie they enjoy. I do not want the attention from my fellow movie goers or to cost them a ticket. I have only done this twice in my life when I was SO desperate I could not contain my emotion. So I forced my husband to walk out with me and cried for an hour after. The other time I was with my best friend from childhood and luckily she hated the film too (it was an unknown to us psyche thriller) and it took no convincing to get her to walk out. 

I KNOW in these moments that this is an internal struggle I have to battle on my own. Which is both isolating and empowering in contradictory ways. Once a panic attack starts it usually subsides within the 10- 20 minute mark but that ten minutes is a hell full of symptoms. I have little tricks I do to minimize the escalation of emotions. I engage in repetitive "normal" behaviours that remind me I am in my body and doing fine. I put on my hand sanitizer and smell the familiar scent as I gently rub my hands together, I rub my arms or legs quietly pretending I am cold or if I am cold to bring the feeling back in, I chew gum or drink some water to stop any choking feelings and to do something with my mouth instead of scream or say something dumb. I repetitively check the time and count backwards until the time we can get out of the theatre (even if I am enjoying it.) I picture being safe in my vehicle or home in my bed. I visualize, visualize, visualize. My eyes are wide open, taking in both the film and every ounce of my surroundings covertly, but I am also somewhere else in the back of my mind. I tuck myself in to a safe, visual place I have been before and tell myself, this too shall pass, I will be there soon again.

It's pretty intense. Fighting to normalize and not disturb the people yet trying to also enjoy the experience (because yes, I want to enjoy normal experiences too and some of it IS fun.) It is a battle most do not understand. I realize people see me and see a slightly quirky person but if they witnessed the internal struggle firsthand they would probably label me many unflattering things. This emotional struggle of sensory onslaught effects the physical body. By the time we finished the film (which I loved the acting and directing of) I had been holding my pee for an hour because I did not want to walk by the rowdy, burly drunks. My body was rebelling. I was in pain. My insides were trembling. On the way home I clawed my stomach a few times to distract from the immense pain (I had red streaks all over by the time we arrived home), but I think I came across normal (ish) because my husband did not even know what was happening until I wrote about my struggle the next morning. In these moments I can not often have the words to even form what I am feeling. I know what is happening but I do not have the reserves to EXPLAIN what is happening to someone else. It's a great game of pretend. I was often told I should be an actress. Isn't that what most people do in life? Play and pretend? I genuinely show up as I am to almost everything BUT the sensory, that is when my natural armour of acting becomes an automatic pilot response to survive. It's also important to me to try to make these excursions work occasionally. I want to be able to show up to a few moments in life in a way most of humanity can understand. Sometimes it ends up fine...but I don't engage in stretching circumstances as much as I did in my childhood.

Growing up I was always sensory sick. (See HERE and HERE for more.) With sensory sickness a low grade fever develops (a phenomenon that I have literally proven but still is not recognized by most doctors), I fluctuate between hot and cold because my body can not regulate, I tremble and won't stop shaking, everything hurts, my bowel goes ballistic which is the most painful part of the attack, my ears ring and I feel floaty, I get a migraine and feel so thirsty but can't drink because drinking hurts my stomach and causes me to want to violently puke. I want to escape into sleep. Yet, I can not because ironically, even though I am feeling so many bodily ills, I feel strangely disengaged from my body. My mind can not get in sync with my body so I don't sleep until I am basically snuggled into my husband so tight that I am almost suffocating him and then I focus on his breathing instead of mine because mine is too confusing.

My body betrays me because I previously betrayed it. That is the basic issue. My body is past the point of understanding what signals are "right" or "accurate" and what are "misfires." My mind convinces my body that I am in danger. It is an equivalent to actual shock. My body thinks I am in shock and that I had a traumatic experience. Technically I DID have a traumatic experience (sensory wise) because the autistic brain cannot separate that from true trauma. Thus, the body does the exact thing it would do in a traumatic experience.

This is severe sensory panic. All humans experience sensory onslaught or overload to some extent at least a few days out of the year, but Autistics get the joy of regularly having "ordinary" experiences turn into purgatory. The next day is like a hangover...and a whole heck of a lot of trying to not feel guilt or shame or 'less then those normal people' and make decisions that work for everyone without paying too heavily for what was beyond control. As a child I was often put in highly emotional circumstances, showing up where basically zero of my extended family understood what was happening to me. This part of me was not understood well because there were not supports to help. This was also partially my fault for "normalizing" and pretending so well. Even my husband, who is well versed in this aspect of me, is still blindsided when he hears what really happened from my perspective, in a situation he thought I was doing just fine in. So I can not blame others, who knew me even less intimately to actually get it. Plus, most of one side of the family were S types. (Click HERE) As I have mentioned, S types like to show up, be there, and stay in sensory experiences as bonding. Thus, I was thought of as unusual, cold or selfish. There are always numerous factors to misunderstanding and I can not put the full blame on anyone or anything.

I truly believe that with enough of these forced circumstances and sensory overload, a person can end up with any number of permanent chronic conditions or diseases. Dis- ease causes disease. Autistics who are not understood, are not given agency or choice and who do not implement boundaries WILL pay for their expected conformity into society, even with 'simple' expectations like attending a birthday party. "Oh you can just stay for ten minutes...just give the person a hug and show them you care. It will be fine. You will be fine. It's important for you to be there." Such statements are damaging long term. Because they are untrue. It IS a big deal. Ten minutes is the same as an hour if the experience carries the same sensory elements. The body responds to trauma in the same PTSD fashion it has in the past. There are ingrained triggers in each unique autistic person. We all have them differently but they are there. To ignore them is basically to devalue US. Statements such as these are saying, "Your experience is not legitimate. You do not know who you are or what bothers you. We know better. We expect you to show up in this way and if you don't you will not be loved nor be able to convey your love to us." If someone actually said that point blank it would be considered verbal abuse, yet these messages are given over and over to people who are wired differently in the world.

"I never said you had to offer me a second chance, I never said I was a victim of circumstance. I still belong. Don't get me wrong. And You can speak your mind but not on my time."- Billy Joel. "I don't need you to worry for me cuz I'm alright. I don't need you to tell me it's time to come home....This is my life. Go ahead with your own life. Leave mine alone...."- Billy Joel.

The lyrics above are powerful to me because of my history. When I explain situations like this or moments where I am vulnerable I am not asking for people who have misunderstood me to give me a second chance. I am actually writing for those who have not discovered this aspect about themselves or who need validation in their being. I am not just a victim of circumstance, even though these circumstances HAVE contributed to my life, but I have found ways to cope and I will honour those ways. I always feel for the people I see in specialized homes who are forced to do jobs to "make" something of their life and have someone babysit them all the time. I know, in some circumstances, I AM that person, but I feel so lucky that I have my own freedom. I believe people can speak their minds whenever they wish, just as I can, but that they no longer need to waste my time with their opinions if I am not in a relationship with them. I can chose to walk away, close the browser, ignore ect. I feel for those with special needs who have to live their caregiver's versions of LIFE. I often will yell out the lyrics of this song when I have recently been disempowered.

So what if someone wishes to spend most of their life in their home? So what if the autistic child just wishes to watch Disney over and over again in their basement. That is THEIR life. If they have the means to support that life, or someone else is willing, and they are LEGITIMATELY happy, their life IS a success. Yes, we need to be taught basic skills of survival and it IS empowering to be able to learn whatever we wish to learn, but in the end, if we still wish to not feel sick, and find ways of living that avoid being sensory sick, it does not mean we fail at life. What it means is that we are honouring our lives and if we can make it work, even if we barely scrape by, and we feel pretty good about it, THAT matters. The people who can't love us like that, never loved us authentically anyway. "Too long I've been afraid of losing love I guess I lost, well, if that's love it came at much too high a cost."- Elphaba from Broadway's Wicked.

I love the people in my world. I WILL make sacrifices for them if they have also made sacrifices for me. But my choices have to be sacrifices that I CAN handle without too much PTSD. I will show up, but often I will show up the ways that are truly ME. That means writing something, sending money of my own if I can, making a fun playlist, sending a video, or engaging in deep conversations or sending links of thought out advice. I may not show to their gathering or even their funeral. Most likely I will not and if I do it causes me weeks of therapy and sickness...and in turn makes my family pay. But I will be there, when I can, how I can, if possible...but this means there will be less and less people in my world. Because even if I gave fully to ten people, that is still a lot to give. Maybe people who are sensory strong CAN spread themselves thin and show up in more physical ways. I admire that but not enough to become what I am not. I am a woman who has both strength and weakness. I can be confident enough to claim to "drown oceans (CLICK)" and walk away from situations that I no longer feel the need for. I am also wired differently and have moments of intense self scrutiny and immense PTSD. I can be both. I can still be worthy as both. I can love the very few who understand and whom I will give most of my life for.

I understand judgment because I have been judged. Too often found lacking even with the best of intentions from people who truly DO love me. Such is life. Such is the culture we find ourselves in. Which is why, even though I intensely observe and notice most nuances, I am not a judger. I find most stances and ways of being in life legitimate, and those that are truly wrong, I also see how they came to BE. I understand without encouraging the behaviour. (Spoiler alert for Wonder Woman ahead) At one moment in the otherwise disappointing third act of Wonder Woman - the first and second acts were incredible!!( spoiler ahead) she stated, "Goodbye brother" firmly yet compassionately with respect while ending a life. I understood that moment in it's complex contradictions. It is what women ARE at their core. A mix of strength and vulnerability. More so, it is what I feel I am being wired differently in a world full of sensors and people who believe that showing up physically is the most important aspect of being human.

The day after my theatre experience was a complex mixture of pain, introspection, happiness, fears, insufficiency, being enough, and struggling to the beauty. This happens time after time when I am put in these situations. A constant questioning of who I am and where I belong. But in the end, I always come home to myself. I celebrate the worth that I am because I exist. And when I don't exist anymore, there will be others who embody this. They are worthy because they exist. You are worthy because you exist. That is the conclusion I get after each theatre experience, so in the end, while it may cost, I also find something worth taking away.

Song Choice; To Learn Her- Miranda Lambert, My life- Billy Joel ( Glee version) "I never said you had to offer me a second chance, I never said I was a victim of circumstance. I still belong. Don't get me wrong.  And You can speak your mind but not on my time."  Hey Jude- The Beatles

Friday, June 2, 2017

About Living.Quality Versus Quantity- Sleep Hacks and Hope For The Deviant Evening People of the World. Parenting. The Rat Race. Building A Life that Doesn't Need A Vacation.

I used to worry when I slept in that I was missing out on my life. I felt guilty when I saw early morning risers getting things accomplished or talking about their precious mornings. I have no doubt that their mornings were and are them. My husband is a morning man. He feels awful and deals with headaches, backaches, and stomach issues if he sleeps in past eight. Luckily, he lives in North America, where early rising is a general requirement to life. The majority are early morning people. Yet even in the minority, there are many who suffer because of the typical 9-5 schedule.

Without a certain amount of sleep I wake to nausea, feeling punched in the gut and sore. It's the joy of chronic genetic insomnia (confirmed by a sleep test), having a busy and differently wired brain, and chronic illness. But sometimes I get the ten or eleven hours of sleep that give me an optimal night. The other day, for the first time in weeks, I slept from 11-11. Of course my body didn't allow that twice and the next night it was four hours. I have always been a ten hour girl. My mother said she could tell the difference if I had less.

Technically, if I don't count my lovely evenings, I end up with less time in the day when I actually sleep in. But even if my "aware" time is cut shorter by the amount I sleep in, it's worth it because I feel better and don't drag through the hours awake if I sleep most of the morning away. So then I ask myself the age old question of personal preference - quality or quantity? For some things in life I pick quality, but for sleep I benefit more from quantity in my day to day existence. Which means sleeping an entire morning away, if I am able, is definitely worth the missing hours of the day to "get things accomplished." I'm working on allowing myself to just be ME, without justification or without having to excuse my "deviant" sleep patterns to people who "catch" me. My grandpa has worked since he was twelve years old. It breaks my heart if I think about it too much. But I take this into account when he stops by horrified I just woke up and it's past 8 am. The little teasing lecture about hard workers versus lazy people and stories of people in "his day" fill my ears and I smile. I can see that part of him IS actually concerned for my well being. However, this concern is a one size fits all concern, coming from a certain generational perspective, a personal lack of autonomy and a different life.

Most institutions try to schedule morning appointments. Most days are 8-5 work days and school also follows a similar schedule. I used to feel an obligation to rise and drag myself to these moments. Then I had an epiphany-  It's my life. Why am I giving it to the masses? Yes, I realize the need to work. But did you know that when I did this, and showed up in my way, I made twice my husband's normal wage for my family in one year. I won't be able to repeat that amount again, but it saved us from losing our home and from severe poverty. It took months of hard work to attain this, but yet it happened when I showed up the way I COULD and thought outside the box. 

As for the educational system for my children, regular readers know how I feel about that institution in most regards. While I know it is necessary for many and important for some, stepping out of it was probably one of the top ten best choices of my entire life. (Read Dumbing Us Down*) That decision came at a cost. I hated home schooling at first and felt helpless... Until I found my groove, unschoolery and a fantastic facilitator. I had a tough time when parents who believed so firmly in the system challenged me in this area. But now? Live and let live. Their decisions to enroll their children are great if they are happy. Mine works for me and my children are happier and healthier than they ever were in the school system. One of my children was especially gifted and instead of honing in on that, I wanted them to just be a child. I made sure that they were fed enough information to keep them challenged, but to also have ample time to enjoy childhood. More schoolwork was not the answer for them nor was it the answer for my severely learning disabled child. Why do we put pressure on our children in the rat race to compete? Why are certain gifts seen as weakness? Why is our answer to put more work or install more memorization into our children? The simple answer is fear for their future but the more complex answer involves our own personal stories and goals of our own souls, our personal mishaps we don't want repeated in our children, and our general genuine care that our children be all they can be or be happy in their life. But regardless, life will give them both joy and pain. What they need to learn most is simply to LIVE each moment and to be content with themselves in any circumstance. More joy, free time, learning about emotions, learning about each other, co-operation, individuality, and magical BEING was the answer I was searching for. It paid off in most ways.

Due to my recent eleven hour night, I had a day of clarity. When my kids were younger, the comments usually responded to a statement like that with,"Well I have babies or young kids so it's impossible to have the luxury to sleep in." That was partially true when my babies were screaming all hours of the night. I understand sleep issues and even with the best of hacks, some sleep issues can not be resolved. But when it happens- sleep should be held in high regard. My eldest two were NOT good sleepers but we snatched sleep together whenever we could. As they became older, I began dropping events that required me to get up. I switched my kids schedules to match mine because I realized I am far better with sleep and my largest block of REM sleep happens in the early morning. Thus, they also enjoy a enhanced quality of life due to their dependence on me. I taught them from age two how to get their own food in the morning if they woke before me. The two eldest were highly verbal at age two. My youngest couldn't do this but my daughter took care of him when he reached this age. I left out cereal that couldn't be choked on like cheerios or Go Go Applesauce, the needed materials and water, taught them how to put the DVD on, and how to come lay by mommy if they felt lonely. I locked all doors and made use of gates. My door was open. I woke up at the slightest unusual sound but could sleep through if I heard their sounds in the background. They knew what was safe and I safety proofed our home so that I could sleep.  I made sure to make the most of my time once I woke to focus on them and they stayed up nights with me. That's how I survived the early years and probably why my daughter is so responsible- which is both good and bad. Everything comes with some good and some bad in this world and we choose the choice that balances us the most and hopefully helps us show up in a way we can manage. I might have died if I hadn't have done those sleeping hacks. I had severe post partum depression and who knows what would have happened if I had less sleep.

I'm glad I gave up preschool or any school for my children because getting up alone would have made me the crankier mom. I might not be the best friend to my children that I am today if these circumstances would have changed. I probably would have been like Frankie on the Middle, continually stressed and yelling for my kids to get out the door on time. I know this from the two years my children went to school. Luckily, this didn't turn out for my life because of many counter cultural decisions. 

Our bodies and minds are NOT all the same so our schedules shouldn't be either. I think those that are in high thinking drive also require more down time of the brain to dream. My therapist has said I think more thoughts in a span of a few minutes than most do in hours thus it makes sense that perhaps my mind needs more downtime and dream time to sort through? When I'm sleep deprived I sound like the dumbest person. I have a tough time expressing my thoughts normally anyway, even with sleep, unless I am writing or in a very safe comfortable place. 

It's odd how we praise people for sleeping early in the evening and getting up early. Yet, we do not praise someone for being in their PJ's at eleven in the morning or staying up late getting things done. It's cultural conditioning. Because really, there is not much difference. One is not better than the other. One is just more conducive to our institutional 8-5 work horse mentality.

To illustrate this point, my children are conditioned by me. My world has built theirs. After my recent sleep in I heard my eldest son meet my husband at the door at lunch break with, "Mommy slept in and had eleven hours. She is the best she has been in weeks. She is even going to write a blogpost! Isn't that great?" My youngest son would not stop hugging me, chatting with me, smiling at me and saying, "You just seem so great today. I love you any day but I just like that you look so cozy and happy after sleeping so long." My daughter was jealous and asked how I managed to sleep as long as I did. If I had answers to that I would not have been labelled with genetic insomnia. But, this was their reaction to me "oversleeping" in our world. Applause, gratitude, joy and celebration. Even with that, I have to fight my own mentality of conditioning that comes with guilt, should haves, accomplishments, time for the sake of getting things done, and ableism. These feelings have subsided heavily as the years have passed, plus when I get the sleep I need, I feel FABULOUS so it's easy to wave off the old conditioning with a happy middle finger. Yet, I know for many, this isn't the case. Well in North America anyway. Unfortunately, a lot of the world, due to business, has begun to follow the same damaging model. I admire the culture's that have incorporated siesta's, later hours, shorter work days, optimal downtime...some culture's have more of a balance in this regard than others.

My husband's trade can't get away from "normal hours" completely but we made it work for us. He takes off early every day and has three day weekends unless it's during a catching up on debt time, when for a month he works over hours. But we only allow him to work like that two months fully out of the year MAX. Even if we need the money we find ways to live simply and cut back. In construction this was not exactly embraced. It makes it hard for the times he works with others and it changes a lot of factors. However, once he clearly outlined his needs for those he worked for, most chose to keep him on. Some may not choose him for their job in the future, but we have yet to run out of work, because when my husband shows up, he works harder than anyone on his team. His hours almost double the labour output of those of most normal workers (minus this hard year he had) and most of this is because he has ample downtime and enjoyment of life at home. It took boundaries, negotiations, walking away, being diplomatic, showing up, working hard, and making the most of both work and home, to have this be an optimal arrangement for most involved in the equation. Sometimes we still run into obstacles. Occasionally he stays later if it's crucial. He also had to have a pep talk with his co workers about choices and how he chose this but if they choose to take off at the same time he does, they have to be willing to work harder during the active hours and be upfront about this in their contracts as well. Generally though we make it work. I realize this isn't a possibility for all, but for the majority it's closer than it feels. It require diplomacy, trade, thinking outside the box, proving it can work, and ASKING. Also a lot of confidence and tenacity and bosses or co workers who are not small minded people.

I heard a quote once that said, "My goal is to build a life I don't need a vacation from." I was already feeling this way, and the quote inspired me in my day to day. My husband and I do not take vacations. Because our life has them built in. I'm not anti vacation. I firmly believe if you work a regular job you NEED to take a vacation with your family from time to time. Yet, why do we take vacations? To experience new places is one reason. Another is to have forced downtime without the daily distractions. We hope that another place will give us new perspective, joy or life. Sometimes it does, though truthfully most people I know come home more stressed about their day to day after a vacation. I also remember most vacations of my life being unsuccessful besides a few key moments. But what if I can build moments with the same type of feeling INTO my daily existence? What if our family can find new ways to experience unique feelings, downtime and experiences without travelling far to attain them? We do take day trips to experience different landscapes or towns, but in the the end, these trips are not vacations but educational experiences. We mostly have built a life we do not need a vacation from. We have ample downtime to finish projects or start a whimsical creative project. We enjoy family walks, reading time, game time, watching shows, making meals and listening to podcasts on a regular basis.

On tough years like the one we are currently finishing (hopefully), we still don't need a vacation. We instead use the time to heal, be depressed, and recover. This year has been particularly hard, from death of a mom, to terminal cancer diagnosis within our extended family to a few other non terminal cancer cases, to my husband having mono for months followed by my daughter and I. We have had strep and financial woes, losing a family pet, our truck stolen, our safety threatened, extended family issues, and multiple health scares on top of the crazy current situations of the world at large. Of course mental health has been compromised due to the external and we all look like we have been through a battle. We gained weight even though we were still eating healthy because all we wanted to do was lie in bed some days. But that is ok too, because it is what we needed to do. Having a softer body is also a way of setting an example for our children that worth does not come from a certain body nor a certain way of being. Beauty does not come in a size.

Some years just suck in general, even with the little moments of beauty in between being savoured. Some moments are not meant to warrior through but to slowly find a way out of with a soul in tact. Some lessons are learned while others are unlearned. If happiness and worth or well being were all about working hard, North America would have a lot less illness, suicide rates, and other consequences that come with our current mentality. I don't think most people regret sleeping in on their death beds. Especially if the sleep enabled their life choices to be inspirational in their waking hours. Nor do I think most would only think of their vacations. The day to day makes up life. Little moments. These moments require a certain balance of mentality, perspective, choice, and circumstance to be a life that we do not need a vacation from. I do not view this without gratitude that some of these factors are luck of the draw or being Canadian. I love my country and I love that we are a little bit more laid back in most regards but the mentalities of our surrounding cultures bleed through with the constant influence of social media.

Why do we work so hard? To build the world? To make it a better place for our children? To survive? To grow? To thrive? If it is for all these things, which in the end, simply equal beauty, love, joy, stability, growth, and fulfillment, then why are we not taking the time to also SAVOUR that now? Some are not so lucky and basic survival is all they can try to achieve, but for those of us who have choices...Why are we not taking a life that optimizes joy along with hard work? Who are we working for and why do we make the choices we do? Are we looking at our lives through another lens? Are we asking ourselves the tougher questions that may not fit in with the majority mentality? Some people may take the Stoic approach while others may take the Epicurean or the many paths in between. But both movements and all paths somehow GAVE to the world, enhanced and people became. So why can we not do the same?

*By former educator John Taylor Gatto. Link under Unschoolery on newly arranged Library! I finally organized the books somewhat by theme on my Library page found  HERE.

Song Choice: Good to Be Alive- Meghan Trainor: LINK HERE

I always feel a little conflicted posting this song. We were first introduced to it when we knew our children's Grammy was dying. And we were fully aware that sometimes it DOES NOT feel good to be alive. Seeing pain, struggle, fighting to live... We were careful for a year not to play this around my husband due to his own situation plus the line about telling a mother one loves her...not such a happy song if it's a painful loss of not being able to tell her ever again...but for my daughter who still has her mother- it is something she loves and comes to hug me each time the song is on. So, it really is circumstantial. In another perspective, honouring life means also taking those moments when it DOES feel good. Hopefully, anyone who has ever died had a few of those moments. I have to remind myself that one day I will have my dying moments and I have had my pain moments- it comes to us all- so it is okay for me to feel good the times when I do in MY moments. When my babies are first held in my arms... waking up for the first time with my husband beside me...realizing I had the best friend I always dreamed of...looking at my little starter home and realizing it was the home I could dream of and IN... Date picnic with my husband when I technically dated my food more than him because it was the BEST...Witnessing each birthday that is decorated with care by my extended family and sister for each of my children (Once Upon A Time theme was the most recent) the little daily moments when I look at my life with satisfaction (sometimes in pain and sometimes not) and think, "Yes it does. Sometimes it feels good to be alive...and that is okay too because I have many times when it does not. Understanding that makes those moments even better..."