Thursday, April 2, 2015

World Autism Day and the Power of having Understanding Friends

Post Edit: After I published this another friend sent me a Pin on Pinterest and said she is wearing blue on my behalf.  I never asked for that support yet it is there. I feel very lucky. Love you Keren. Feel free to wear feisty red on behalf of me or a happy yellow if that is what you prefer!!:)

Those in the Autism community do not always benefit from "Awareness" thus we sometimes look upon Autism Day with a bit of chagrin. Organizations like Autism Speaks take this day to spread more mis- information. Those on the Autism scale benefit from people taking our blogs seriously but unfortunately that often does not happen because of these reasons: I have had all five of those points brought up to me before including some from people I thought knew better. It has been disheartening to say the least, but I still have hope...

Today, on National Autism Day, I woke up to this text, "Thinking of you friend... today is world autism awareness day and i was just thinking about all the wonderful people i know who have greatly enriched my life ❤❤❤❤"

I was honoured. I often don't even remember World Autism Day. To have a Non -Autistic/Nuerotypical friend remember and thank ME for being who I am from her far off place in my world (we live in different countries) was astounding! This friend reads almost all the links I send her, she gives me feedback, and she reads my perspectives with great respect. I realized that I really could not ask for more in anyone. To have even one friend like this is a blessing. I know I have at least 5 friends who actively do the same.

Today I would like to honour my Neurotpyical friends who make the world a better place with their acceptance and willingness to see the world through my eyes at times. I deeply value them. I would also like to thank my Autistic friends for making me feel less alone...and allowing me to feel "my normal" in a world where I often feel misplaced. 

With Gratitude; 

I dedicate this post to Kristin with love. I regret we do not have a photo together:(

I'd also like to specifically thank all my readers who come here to understand with grace or to get validation.

 Special thanks also goes to those Kindreds who have actually read a full book that was written BY Autistics on Autism *click for links* (Aspergirls or Nerdy, Shy and Socially Inappropriate or 22 things) just for me or for my children: Sara, Philip, Kristin, Keren, Rachel, Mom, Shelley (mom), Miriam, Dr. R, Sanghamitra. (Apologies if I missed anyone.) My heart is warmed each time I think of the moments you approached me to ask what you should read or in the odd time I approached you, that you showed up for me with a resounding YES and made the world a better place with your new information. I hope I also enrich your world because that's what friends are for. I am glad you are on my side.

 I am also grateful for the additional friends I have who may not have had time to read the books but have read some of my posts and supported me through the most transitional years of my life. (Dea, Lola, Cyndy, Glynis, Rain, Christine, Cindy, Alicia, Amy, Alyssa, Lisa, Lynn, Atlanta, Carelton and Valina, Grant, Tim, Steve, and Jessica.)

and because I am a sap:

Sunday, March 22, 2015

Stories of Hope and Validation of Being: For Autistic/ Asperger's Birthdays: Odin (13) and Glenn (6) #OdinBirthday

I am always relieved that my son is not in school. I hear the tales of bullying for any child who doesn't seem to fit. A child who may struggle with conveying some emotions or does not always understand social etiquette is especially at risk. My child's circle of friends is very small. He has his brother and sister as his best friends and one other child who has been like a brother to him since he was born. Other than that we have a few kids who come in and out of his life, but the sticking power is not there. Some of it is because of his sensory issues. Some of it is because they are interested in things he is not interested in. Sometimes it can be chalked up to personality differences. At it's worst he has less friends because of a FEAR of difference or people unable to overcome the differences in communication.

When I hear stories like the two below links, I cry my eyes out with happy tears. In the news there are so many negative stories about Asperger's or Autism. I stopped reading the stories because they broke my heart. Often it felt that the articles were full of marginalization and misinformation about the Neurodiversity we possess and only perpetuated the greater population's fear of a difference that also has some beauty. My husband, however, pointed out these two articles to me because he knew they would help heal some of the damage that other news stories have created.



Happy birthday Odin! Happy birthday Glenn!

The stories of these boys bring healing. There are many children who are ignored, teased, bullied, or neglected by their peers who do not get their happy moment, but the lives of Odin, Glenn and their mothers are proof that love and effort can change this fact. My hope is with a little understanding, some educational changes in the system, and parental guidance on how to treat the Neurodiverse, this can change. I respect each celebrity that responded because a few minutes of their busy day was given to show a moment of recognition. We are all only human. A celebrity has more of a platform for this reach of humanity but they are still on the same level of beauty and worth as the child who is celebrating his own gift of life. This is especially impressive that someone who is busy with many connections used their platform to install worth. This validates the inherent hope embedded in the human experience. When we recognize a soul and acknowledge BEING we give the greatest gift; we validate a person's significance.

There are other ways we can contribute to the validation of Being. Installing confidence and worth usually creates a trickle effect of beauty for the world. We can create this change simply by reading perspectives by those who actually have the differences (see my side referrals to the blog Musings of An Aspie or my Labels on Asperger's/ Autism), or changing our perspectives of the stories we find ourselves in. We are largely influenced by our culture. We write our stories by living them and sharing our beauty and struggles.

Life is made up by little moments. If each of us gives a few of our moments that make up our lives to validate the worth of another Being we contribute to the positive changes in the world we help create. Let's be the change.

Thursday, March 19, 2015

Gasping for Breath. Thoughts on Anemia, Depression, and My Closet.

~This picture was after a full day in ER (due to other reasons not in this post) and three recovery days after. I was still feeling awful but did not want that to define my I decided to take the kids to my next medical appointment in the city, put on some false eyelashes and loads of make up and pretend I was fine. I still had to take breathing breaks in the mall and my husband had to carry my purse, but for my kids, they will look back on these pictures and not realize how crappy I was feeling because I look well. That matters sometimes in feeling well. It can't be done all the time, but sometimes when I force myself in moments when I feel moderately crappy, it works sort of! Sometimes faking to make it actually does work. Being an Aspie I am pretty good at masking...sometimes masking leads to living...but if done for prolonged periods of time will have the opposite effect so I am not saying to mask regularly. I lived that life once and it is NOT worth it but sometimes it has it's payoffs.~

It's so hard for me to breathe. The air feels too light. The substance of it seems to be missing from my oxygen. I take gulping breaths through the window because cold air seems to have more of a bite. I have been craving rocks and ice and those comforting plastic nose things the hospital gives oxygen in.

I have been varied forms of Anemic since teenage hood. It started with my heavy menstrual cycles and has alarmed health professionals since. I have had the iron shots (*see post note), the constipating supplements, and the consistent blood tests until I can get my levels up. My mind forgets how absolutely awful it can feel.

I know the warning signs. A few months ago I knew I was Anemic again but since it was/is my normal, I tried to ignore the fact that stairs took the wind right out of me. I told myself it was because I was out of shape even though I am participating in rehabilitation Physio for severe Fibromyalgia issues. I told myself that panting after a walk could be from lack of being outside and the light heart pains were a 'healthy' sign of exertion. But I knew my own bullshit. I knew I would have to face myself and the blood work because I know when I am just lightly Anemic (my normal) and when it has crossed into affecting my whole system. The tip off usually comes from my Native/Hispanic Grandfather, "You are so pale missy. That is not how my granddaughter is supposed to look. Go get some sun missy. Are you sick?" This happens over and over again because he is cute and wants me to have my sun kissed look back, but also because it's my first warning sign that my levels are progressively going down. I pull out my fake bronzer to avoid the pale comments but sometimes I forget to put on my make up armour that hides the bruises under my eyes and the pallor of my skin.

I participate in denial because I don't like the monitoring. I don't love the poking, prodding and freak outs of potential bowel diseases or causes of inner bleeding. They never find anything. It's just my body and crazy cycles, but just in case I have developed something new, it has to be checked. I comfort myself with the fact that this has been happening for 21 years. If I had a weird cancer or bowel disease I would have already been dead from it. I am thankful for the advances in medical tests and professionals who genuinely DO care but medical tests are the ONLY thing in life that can drive me to borderline suicidal thoughts.

I have been severely depressed, in the past, with diagnosed PPD, PMDD and PTSD and NEVER have I answered 'Yes' to the suicidal tendency question. Not because I am somehow braver or strong than those that do, but because I love life too much. I love the small things like flowers and plants, the colour green, peach or nude coloured lipstick, the smell of books, my kids smiles, and my husband's eye crinkles. I have the mind of a poet in the sense that I live sensually and I soak up so much beauty...which is why hospitals put out the light. There is no beauty to see, hear or smell. I need beauty to live. It's my drug. I like being alive even when I am severely depressed. I still have the moments that transcend existence. I latch on to hope and bleed it dry. My husband has answered yes to THE question when he was in depression and I have thought about what the difference was in him and I, because frankly, my depression scores were always higher. Some of it is being Autistic. Being Autistic I had to constantly overcome being and feeling different, overwhelmed, and isolated. That builds resilience. I have been told I have resilience in spades and I bet I can thank being an undiagnosed child/teen in the educational system for that. Something good tends to come out of something bad and sometimes negative consequences come out of something positive. I have had different faiths in different stages of my life and I think it is petty to say that faith in God will get one through anything. It's not true. But faith DOES contribute to well being, even faith in hope or life or colour. Some of it is fear. I fear no longer hearing the voices of those I love, I fear the consequences of taking my energy out of the world before it is ready, I fear the consequences of what I would leave behind. That's just me, but if someone mentions a Colonoscopy I can almost answer yes to the suicide question when no other dire moment in my life has brought me close. I wonder why that is? Why would I rather die than do a medical procedure or take certain drugs? Perhaps it has been the prep I have done for a similar test before and will NEVER do again but I think there is something more to it. Maybe it is not meant for my specific journey. Sometimes we have intuitions for a reason, other times it is just fear. I have not figured out my line yet. I now can manage blood tests because I have had so many and request the Butterfly. If you are a bleeder or paranoid of blood or needles ALWAYS insist on having them use the Butterfly. It makes such a huge difference and I no longer bleed forever after a test. I hold up well under emotional and mental strain in general yet can not handle some bodily ills. At the same time, I have a high pain tolerance with some random pains yet very low with sensory overload pain. Perhaps this is part of being Autistic?

My life currently feels like an Air Supply song; floaty, airy and breathy. Yea, I see the irony. This last cycle has wiped me out to the point that after showering I have to sit down and take a few desperate breaths. I feel like a cancer patient which is not how one without cancer should feel. I feel empathy for anyone who has any condition that causes problems in breathing and then I take on their energy for a moment and sit with their grief, I send out warmth and light wishing there was something more I could do because I know I am in a good place. I know in a few months I will breathe fresh again and my blood cells will plump up. I have a wonderful doctor who has seen me two days in a row and will discuss my treatment plan again (I have had other health complications and my white cell count is also up.) I know the drill, the iron and Ferritin are extremely low, my Hemoglobin has gone steadily down since the steady stream of iron shots in 2007**. I'm cold, exhausted, out of breath, pale and irritable but more than that, I get depressed, because I am a mother. I am supposed to be able to do the dishes and minor responsibilities without being out of breath. I am not allowed to do "any form of exertion and definitely no running." That's funny for anyone who knows me. You will never see me run unless it is an emergency. My physiotherapist won't allow me to run either due to my muscles, alignment and spine anyway, so there is that... I already have to pace myself with Dyspraxia and Fibromyalgia, so having something additional to deal with in the day to day responsibilities can add up to me feeling like I fail. Especially when I am strict about my health, what is put in my body, what I do to manage stress and my overall dedication to  being a contributing member of my family. I feel depression sink in when I feel incapable. I fight so hard to be capable (see THIS post) so when an additional health complication comes up, I feel myself sinking and clawing my way up to hope and validation that I am worthy. My mantra is I am worthy because I EXIST. If I believe that of other people, I have to fight to believe it of myself first.

The Closet:
In my world, behind the solid, closet door is my safe zone. I have found beauty in that deep, dark, small place. Under the clothes I sit in the dark. This is when I am at my worst. If my husband finds me there he knows. More importantly, if I am sitting there it means I recognize the signs of depression in myself. I know what to do, have wonderful support, know how to help others, and how to analyze the whole deal. With all that knowledge I am able too keep a tight lid on  most of my lighter depression. Most of the world does not even know when I am in it but when I am in the closet I can no longer deal with the outside. I just need the smell of our laundry detergent clinging to the clothes, the quiet wooshing of my heartbeat telling me that life goes on, and the dark caccooning my body from sensory overload. Often my children will join me in there. When they were little they would bring their flashlights and make hand puppet figures on the wall. It was one of their favourite times. "Oh look, mommy is sitting in the closet- it's time for campfire stories and puppets!" And suddenly my world became focused. I still felt the same, but I knew there would be an end to the dark feeling. There always is. Until the moment when I could rise again, I soaked up their innocence. I saw their perspective and knew that when they were older they would remember my walk in closet as the camp out place. I don't believe in shielding children completely from the broad spectrum of human emotion but I do believe in protecting them from a few mature facts. They didn't know that mommy was overwhelmed. They just felt safe. Somehow, from their feelings of safety, I felt safe too. My husband eventually coaxed us out in the world to live, but those moments of quiet reflection saved me from my tormented thoughts. The world  became MEANINGFUL because of closet doors, cozy clothes, sock puppets and flashlights.

And that is what depression is like. If it's not understood it's just a dark closet perceived as cold and scary. With a little light, a bit of empathy, a touch of innocence the closet is still a closet BUT  for a time it becomes a cozy haven.

There is a reason I tell this story. Most of you probably perceived that the Walk in Closet is also a symbol of depression. A simple room in which the occupant will not stay in forever. One day the occupant will slowly step into the hallway to life. And eventually the closet will be full of stored clothes and distant memories. But the lessons will stay as understanding is developed. Instead of a scary place this symbol becomes a brief hiatus. It can be dark, it can be stuffy, dank, closed in with this feeling of ' I am never going to get a breath of fresh air again!' But it is only one room of life. Just one. Once it is conquered it becomes that camp out spot of both bad and good memories. New doors open, the hallway slowly melts into the entryway and with a final push the door to the sunny outside is once again re-opened. With a bit of help, life comes full circle. Clinical Depression doesn't have to be a home, it can remain a sizeable closet. In the fabric of the interior the closet will make itself known from time to time. Meanwhile the other rooms are beckoning. With understanding and empathy, those with depression will be able to live out of the closet in meaningful and wonderful ways. Judgement, misunderstanding and ignorance lock doors. Loving empathy, wisdom and understanding open doors, freeing the prisoners into a space of colour, warmth and faith.. Depression does not have to last forever. Depression can also teach lessons and allow beauty. Depression can be managed. Please have hope and find the proper support to open the doors to the soothing colours of Joy.

Being Anemic is another reminder for me to breathe life. It's time for me to actively build up my blood. It is also time to gratefully take deep breaths, slow down, and practice the beauty of BEING. It's harder than it sounds. It's time to figuratively and physically take in life giving oxygen to revive the cells that make up ME.

Song choice (because I have a weird sense of humour and Air Supply kept surfacing in my mind during this post. Plus, I just love these songs!)

Disclaimers and Websites:
*Be careful what you take being Anemic. I would no longer recommend the shots due to severe anaphylactic reactions in many people as well as other dangers. Read up on posts like this:
I only take iron supplements when it's very bad...or the liquid form and I am very careful about my diet.
**THIS POST IS NOT A MEDICAL OPINION AND YOU NEED TO TALK TO YOUR DOCTOR ABOUT ANY COMPLICATIONS YOU HAVE regarding Depression or Anemia. Anemia can be serious. ESPECIALLY DIFFERENT TYPES OF ANEMIA MORE SERIOUS THAN MINE. See your doctor but also engage in your own health research. Depression is also serious and if you can answer yes to the suicide question you need to see a professional who cares.
*** Websites for Grief or Depression:

Sunday, March 1, 2015

A Beautiful Film about Being. "Being in The World" (Or Why I am a Risk Taker in my life Choices.)

It seems to baffle some people, that I have incredible meaning in my life, despite the fact that my religious beliefs are not always able to be pinned down, or despite the fact that to them, I should have a lesser quality of life, because I am different or choose very different ways of Being. I understand that paradoxical ways could be confusing. I validate the confusion. However, I also deeply feel for that bafflement because it can not be way of BEING...unless one was to LIVE my complete way of Being. We each have a way of being in the world that is unexplainable. On the plus side, we also have a human connectedness and innate sense of community that can also be felt. So in this way, even if there is not full understanding, there is a place of soul that discovers a mutual partaking.

One of my passions is to help others discover that their beauty is BEING. Being does not mean continual peace but it does GIVE meaning. This film below helps give a bit of understanding into this philosophy of life. I had never heard of it before, but I had coffee last night and my husband put this on to help me fall asleep. I was captivated by the fact that while, of course, my philosophy in life has been shaped by books, people and environment, I have never actually studied any particular philosopher. While I know about many philosophers and find reading bits of each an essential part of my living, I had not constructed nor will I ever construct my reality around one particular philosophy, however, I enjoyed this film because it aids in connecting the concept of BEING to creating and the love of life for life's sake. That is something I can fully support even if it does source one philosopher more than others.

I feel the title YouTube put on this film is misleading. It is titled, "A Film about Martin Heidegger's Philosophy" but the original name for the film is "Being in the World." Even though the film occasionally references Heidegger, the film is more about BEING. It takes to the half way mark to start feeling inspired (during the introduction and first little bits I drifted in and out.) But the beginning sets the foundation for the rest of the film by giving a brief history of foundational philosophers and why our age has transcended Plato or Aristotle. This age is more about BEING and I feel this simple explanation of historical collective meanings and beliefs is also an important part of the film.

I am a risk taker in my personal decisions. I may not be a risk taker physically but I am completely a risk taker in how I engage with the world around me. I can be a rule follower in some things and completely break free in a similar realm. To many this seems contradictory but to me it's a fluid way of Being. I can conform to the rules of society that are crucial to belonging but still be individual and connected to that which gives specific meaning. This phenomenon is put under the light around the forty minute mark of this film.

If you find yourself wondering how to incorporate technology in your life but still honouring community and individualism...or if you find yourself 'missing' or in general feel a discontent or discontinuity between your space of belonging or meaning, this film is going to be a validation of hopeful aspiration and calm inspiration.

Enjoy your unique way of BEING. You are a fellow artist of being alive. Embrace that.

(Personal Note: I found the jazz background music distracting and a tad overloading at the very beginning but it ends around the nine minute mark. I left highlights below the film link.)

A Film About "Being in the World"


"A tool isn't an instrument you focus on, a tool is literally a way the carpenter has of engaging with the world." (10:24)

"When you've got the skill the last thing you want is thinking about or rationalizing or stepping back from the activity you are involved in...thought about the domain will typically get in the way of." (10:57)

"The really important ends of human life, are ends that are only perceptible if you allow yourself to be within the human condition totally. For example take love. What is it to have a really loving relationship?  What is it to have real communion? What is it to have meaningful music? can go on and on...nobody can loose touch with that aspect of being human entirely but they always denatured it so of course people were moved by music, they were moved by art, moved by love, so they invented various ways of describing that...the profound truth you can find in a great work of art. The profound truth of human beings." (21: ish?)

"Moods don't happen without our heads but that doesn't mean they happen in our heads. The analogy I like to use is a radio. Right? A Radio gets tuned in to different radio stations as you turn the dial you get different songs playing on the radio. That doesn't mean the stations are all inside the radio. It just means that without the radio getting tuned to them you are not in a position to pick them up." (23:50)

"We talk about the mood in the room...there was a happy mood when we walked into the party or the mood of the nation is depressed right lines up in particular ways, it's illuminated in particular ways and when we get in the right mood it's a way of getting in tune with the world so it can so shown certain features to us. SO when you are happy the world looks different and it is not just interpreting the world through a different filter but that your happiness tunes you into the world and features that you were not paying attention to."(25:43)

"Just as skills allow things to show themselves, they also allow people to show themselves ...they start to see things that someone without those skills doesn't see. They become someone who inhabits the world differently."(26:46)

"Our bodies, our ways of Being get attuned to the world. There is a kind of  understanding there that we can not explain. We are very poor at articulating. Rules work by ignoring details. What anyone who is very skilled in a domain knows that being very skilled means responding not just in general terms but in responding very specifically to what the situation demands." (28:40)

"You know, cooking is like religion. Rules don't no more make a cook than sermons make a saint... You can all have the rules you want...and take the same recipe and maybe you can't do the same things I do." (29:27)

"Risks are very important in becoming a master or  acquiring any skills at all because you have to leave the rules behind and stop doing what one generally does and doing the standard thing and push out into your own version of the world." (30:00)

"So the willingness to take risks is a very important stage of moving beyond just competence and following the rules and doing whatever everyone else does, to getting to the position where you learn what you are supposed to be responding to." (31:20)

"What distinguishes the kind of risks we're interested in from just bravado is whether the risks are taken in the interest of what someone is committed to and what they have defined themselves in terms of and what makes the meaningful differences in their lives. That kind of risk is a special kind of risk and is necessary part of becoming a master of anything." (31:38)

"Being willing to embrace a particular type of possibility and let other possibilities die off."(32:08)

"In addition to the fact that you can't ever get beyond a rule governed behaviour without taking risks there is also a kind of exhilaration or joy in the human existence leaving the rules behind, going out on the edge, letting the world show something new to them.The risk takers are the ones who disclose new worlds, disclose new ways to be human and new ways to behave. Discover new things about the world." (33: 34)

"You commit yourself and suddenly the world is organized in terms of things that are meaningful and  things that are irrelevant to do." (34:23)

"What happens when you have this commitment to a particular something that is finite and that you could lose and is risky and you hold yourself open to it completely. What happens in that situation is that you get a sort of meaningful existence and the meaningful existence is the one that identifies who you are to YOUR meaningful existence. It is the one that picks you out as an individual because nobody else understands the particular hierarchy of meaningful differences the way you do." (34:57)

"What is it to be the best version of us? When we are operating at our best we are precisely not detached from the situation that we are involved in rather we are opening ourselves up to being called to act a certain way in a situation." (35:47)

"The most amazing thing about Bradley when he is taking the ball down the court is his vision. He doesn't seem to be looking at anything rather he's a glaze of pan optic attention... He's not focused at anything but he is ready to be drawn into whatever it is that is calling him to act in the moment."  (36:20)

"Authenticity means owning up to the situation you are in, confronting the situation and doing what needs to be done...when you are authentic you are resolute... you are confronting the situation you are in."(36:52)

"There is a real tension in societies between conformism and individualism. In order for society to function there has to be a certain  amount of regularity in human behaviour." (40:00)

"There is a sense that mindless conformism is dehumanizing and destroys what is great about us and unique about us, so we value individuality as well but there is a tension there, if everyone is individual then we loose the benefits that come from shared adherence to rules, shared norms and values so there is always a tension going on there." (42:20)

"We are thoroughly conditioned in the world we are in." (43:28)

"A real innovator changes the way the game is played, and the game takes on a new style and people start playing it differently even though they are playing by the same rules." (44: 43)

( Now)"Everything is interconnected, everything is exchangeable and all meaningful distinctions have been gotten rid of except for this one empty distinction of being efficient and optimized. And you see it all over the place, we are so used to it that we don't even notice it." (54:17)

"You have these frightening subdivisions where all the houses on the side of the hill are the same shape and same colour...and everyone manages to live that way so everything is totally standardized."

Honestly, from 54:17 onward is the part I am most passionate about and would highlight the rest of this conversation! However, do not skip the beginning that sets you up for it!

"In a certain way that is terrific if you use it in the right way...but if that's just what it's all about everything get's's all reduced just to more information."

"What it is doing is making us look at time that is infinitely usable and accessible... as against that we are forced back to understanding that there are times that are just different, that has a different quality and it is not appropriate to use them in this way." (59:08)

"The problem is how to respect technology and use technology to get rid of all the dumb stuff we used to have to do and yet not let it get rid of what matters and what is local and what is unique and what is significant and meaningful for us." (103:44)

"Affirm four propositions: 1.) There is no place I'd rather be 2.) There is no one I'd rather be with 3.) There is nothing I would rather be doing and 4.) This I will remember well." (?)

"Being in the world is a unified phenomenon when people are at their best and most absorbed in doing a skillful thing, they lose themselves into their absorption and the distinction between the master and the world disappears....everybody in their way can bring out what's best in themselves and in their world we can re- experience what people call the sacred."  (1:17:20)

Saturday, February 21, 2015

Glee and A True Young Marriage Success Story: Love Part 2 of 2 Post: The Wedding Episode

*This is a follow up post to part ONE here: which was written in September 2013. To gather some context I would recommend that post. For those who do not feel like reading the short post, the basic point of Part One was that I applauded Glee for supporting young marriage (and a double minority of gay, young marriage) and I sincerely hoped the writers would follow through on the promise of a young union despite the critics. Glee, once again delivered.
(Picture: My husband and I, 13 years married, at my brothers wedding. I was the maid of honour.)

True love of any kind should be celebrated. News feeds are proof enough that tragedy, bullies, critics, hate crimes and intolerance's are plenty. The main reason I have stuck with Glee through the crazy (the inconsistency could be frustrating but I shrugged this off because LIFE is inconsistent and the fact that they made fun of it themselves was enough for me) is because it was the ONE show on television, that despite the tough, crazy or uncomfortable subject matter at times the heart of the show was based in acceptance, unconditional love, and frivolous fun. Out of my favourite shows Glee was the one that could inspire incredible emotion. Songs have a way of touching the heart when conveying emotion, but it was the poignancy of the writers in unexpected moments that would catch my soul off guard. My spirit felt camaraderie to people I have never met. I felt united with people all over the world who were represented by the characters.

The struggle to belong, be validated in our short and precious journey of life, and be supported is a need we all feel, but minorities feel it more profoundly. Glee creators and writers had a way of filling this need through T.V. in unexpected moments to the hurting and misplaced that were willing to watch it simply for that hope...without criticism...who were willing to take what they could and leave what they couldn't. Despite what any critic have said, I really believe that there are not many places anywhere online or on T.V. that gave/give hope without having to show opposing graphic violence. Plus, what other show breaks out into song with heartfelt innocence?

There have been numerous weeks throughout the years where Glee was my one glimmer of light.  I have been lucky enough to have the support of my husband but otherwise, sometimes I felt completely alone. Despite the fact that it was just a show, I felt like there were people, who if they met me, WOULD support the life decisions that we had to fight for....young marriage being one.

*Spoiler alert: I am going to quote a few profoundly written lines from the latest episode "The Wedding" in the following section.*

Kurt and Blaine are speaking with his father Burt and mother Carole about their previous engagement plans. Kurt says,"And that would have been a beautiful day too but you know it just wasn't meant to be, you know... young and foolish."
Burt:,"Hey, maybe you two guys weren't meant to be but it's like young and foolish? Come on, are any of us ever really ready for anything? You know, I wasn't ready to lose your mom."
Carole, "And because of that we haven't wasted one day since we met."
Burt, "That's right. It has been a crazy adventure ever since."
Carole, "It has. You're gonna make mistakes and that's OK. I've made so many."
Burt, "Are you saying I'm one?"
Carole, "No you are not one. You are one of the good things but you just have to take every second of every day and squeeze it as tight as you can. Just wring every last bit out of it. Finn taught me that."

As I mentioned in Part One, my husband and I knew at 17 that we were soul mates. It made no logical sense for us to wait until school was over or we were older, just for the sake of age, yet that is what people continually told us to do. Our support, which we needed desperately, was either pulled from under us, bossed and demanded from us, or hard-won. It was rare to have anyone with enough logic to see the love that we had and accept that even if it was a mistake, it was worth supporting love. Those who DID actually give support have stayed as a fixture in our lives and we deeply appreciate that accepting love.

We did not want to waste a day. We were not being harmful to ourselves or abusive, yet we were treated like criminals at times because we were (and never have been) traditional, conservative, or followed society's protocols. My eyes teared up at the above conversation because it was one I never had... and really wished for. I just wanted someone to say, "Are any of us really ready for anything? Go and fight for your love." As I mentioned in this post, "Marital success and wise life choices depend on the situation, but regardless, young love could use a little more support. Maybe if couples had more support and successful portrayals of the good and the bad, there would not be as high of a break up rate? Maybe, just maybe, those stats are a little misused? Marriages break up often, regardless of age. It depends on LIFE, on circumstances, on support, on personality, on communication and dedication. Thank you GLEE for once again fighting for the underdog. Finally, I got to see my life choices promoted in a positive way." 

I hope, if circumstances happen to others like when I was young that I give Walter's following advice to my children or anyone who is in love.
Walter: "I'm jealous. I mean you are right at the beginning of it all...You're lucky Kurt, Go be lucky and whatever happens, even if you get hurt again, just remember, the only thing worth doing is going toward love don't waste time double guessing and don't waste time behaving yourself. You gotta run, you gotta jump, you gotta grab it while it's right in front of you and whatever you do- don't let go."

My husband and I believe that we SHOULD grab life when we can. Love is something worth running towards. We have often felt like Santanna when she told Brittany that the rules do not apply, they never have, and we often make our own luck. Humanity has always been scared of that which is different. But there are a few enlightened or brave people who come around and who either change their minds over time, or dare to think outside the box to see that we are not causing harm but embracing LIFE and LOVE. Even if they do not agree, they can still CHOOSE to be supportive.

There was a conversation in The Wedding episode between Santanna and her Abuela which induced a few tears on my part. (A brief context: Abuela/ grandmother was Santanna's best support system until Santanna came out and she disowned her. Despite attempts to reconnect, her grandmother refused to attend the wedding based on her beliefs. It crushed Santanna yet she was strong enough to choose her new love Brittany over her grandmother even though it broke her heart.) In the end Sue brings Abuela to the wedding and this is the conversation:

Santanna's Abuela, "I was wrong. I'm not saying I agree with every decision you make. I still don't believe it's right for two women to get married but I do believe that family is the most important thing in the world, and I love you Santanna. I don't want to be the person in your life that causes you pain, and I don't want to miss a day that I have been dreaming of my whole life or the birth of your kids or any other important days."
Santanna: "I don't agree with everything you believe either. I just want my Abuela back. I've missed you."
Abuela: "I've missed you too."

The beauty of friendship, family and support is not in agreeing. It's being able to be present and be supportive even if there isn't agreement. It's being the people who do not want to CAUSE the pain because we all get enough involuntary pain through life. Life IS pain. Family and support do not need to dish it out because our fair share will come around. I deeply admire my mother in law, because despite the many obstacles we have had to overcome in our relationship, we both learned how to respect each other even if our stances on life are opposing in just about every area. There has been misunderstanding but instead of being the last straw, we both respectfully stepped back and re tried again with more explanations and understanding to omit subjects that would be explosive. Though some family members made big issues out of little moments or beautiful moments were ruined from their continual phone calls of judgement, my mother in law's deep love for her youngest son would always trump her stances. I saw that and it was enough for me. There has been hurt from her and from me but because of our mutual love for her son...she is the one person in the family I deeply love and respect. In our conservative community anything different is often disowned or tolerated in the hope that the person will come back to the fold of the majority consensus. One of our friends was  engaged to his best guy friend. When he bravely faced his family before Christmas, they had him come him only to be disowned Christmas morning with bible verses read to him as he walked out the door. Perhaps this is seen, from their perspective, of standing up bravely for their faith, but to me, I see weakness and an inability to be able to love differently despite the fact that faith may differ.

Burt (officiating): "I want to thank you guys for being so brave and so honest and for standing up here and showing all of us that love and marriage is so much bigger than we thought it could be and also so much simpler. Love and marriage is when two people say to one another I love you because I love you, and I know this is gonna be one heck of a ride and I don't want to do it unless I am doing it with you."

(Vows) Kurt: "Blaine I'm a man whose always lived in the shadows and every one whose has come into my life has always tried to pull me out into the sun or push me back into the darkness."
Santanna, "I have been bullied, outed and misunderstood."
Blaine, "I honestly thought that I would never find real love."
Brittany, "The world seemed so scary and confusing- it was just too fast- it made me feel dumb just because my brain worked differently."

At this point of the show, during the magnificently written vows, tears are leaking down my face. I also often felt dumb because my brain worked differently. Finding someone to love me FOR that, and having almost everyone tell him that he was making a mistake, or that I was too sickly or too odd, was completely devastating. Especially on what was supposed to be the happiest day of my life. Like the old cliche the car was waiting "just in case." In every big event of our lives thus far, I have had to continually tell myself that I AM enough. Deciding that any person is not enough based on sickness or differences is a form of prejudice.

Kurt continues to address Blaine in his vows as Brittany and Santanna also give their vows.
Kurt: "And then you came along and even if someone had told me that it wasn't gonna work out and at the end of all of our struggling and all of our work it would just end in heartache..."
Blaine, "I would have said yes."
Santanna, "A thousand times yes."
Brittany, "I would have suffered it all just for the chance to be standing up here marrying you."

I would STILL say yes to my husband despite our fair share of heartache. Even if it ends bitterly because the moments I HAVE had, have been worth anything else life throws at me. I have never been loved so completely by anyone. While my parents loved me, they did not completely understand my autistic brain and open minded view points the way my husband does. He has held up a mirror and I have seen my value. I also believe I have done the same for him.

Santanna and Brittany, and Kurt and Blaine close off their vows expressing, "I'm a work in progress." (I thought this was a particularly beautifully written statement by the writers. )

My husband and I will always be a work in progress. We are fine with that and those who support us are too. A quote I came across said, "You can not change the people around you but you can change the people you choose to be around." I have learned how to choose those who celebrate and not just tolerate or condemn based on their beliefs. We try to choose wisely. Sometimes we need to kindly distance from those who do not support. A close circle of supporters does not need judgement. Enough people in the world will take up the cause of judgement, hate and opposition. True friends/family (which can be blood related or not) do not need to be one of the main oppositions.  I know I am lucky to have my husband and the few treasured friends we DO have despite some differences, LOVE regardless. Our built in family provides advice without attachment to outcome, and show up if we ask them to without their judgments accompanying them.

My husband has never pushed me when I have not been ready nor has he regarded my shadows as wrong. Instead my darkness has been viewed as part of my light. Any shadows that have bothered me he has bravely helped me fight. Together, we are stronger than apart, and our soul bond delivers. This fact, gives me hope for the greater world we ALL create it Viewer/Fan, Creator, Writer, Actor, Activist, or simply person of BEING. I believe we all are unique and deserve respect on the same level. Together, in love and acceptance, we CAN help shape the world into a better place from our own platforms of living and being. Thank you Glee for being part of my personal platform of contribution and delightful witness.

As Kurt eloquently expressed to Blaine at the end of his vows, "You don't ask me to come out of the shadows you help rip out anything that is blocking the sun, it's time for all of us to walk out into the sun together. Is that something you want to do together?"

I do.

Song Choice: "At Last" by Etta James. This song happened to be on the episode last night which is serendipitous because it is my husband's ringtone for two reasons...
1.) Even though we were married young it felt like I had waited for someone to love me like he did and really SEE me from birth. At last... he did.
2.) He is ALWAYS late because his is an ENFP (click) and chats it up to anyone in his path. When he FINALLY calls me to tell me where he is or that he will be running late, my sentiment is "at last!"so it is with both humour and romance that when I hear the first swell of the music my heart skips a beat and I smile EVERY time (even if I am annoyed which helps diffuse the situation. Who can be mad when this song is playing?!) With my Soulmate at last my lonely days are over. With Philip every day has a moment where life really is like a song.

Monday, February 16, 2015

Dyspraxia: The Struggle of An Adult with Dyspraxia

Post Addition: I want to clarify that I celebrate ANY difference including Dyspraxia. It does not make one flawed or wrong or less. However, there are some symptoms that create definite challenges in the current culture we live in especially...and daily life in general. I wanted to shed light on some of those issues to create understanding...NOT to get sympathy nor to disabuse those who have Dyspraxia (including myself) but to provide a sense of community to those who may struggle within their beauty.

*This is mostly addressing Dyspraxia in an adult. I feel with my son that Dysrpaxia in children can sometimes feel like a completely different issue. He has more communication difficulties and has to depend on adults to help him. While I do suffer from speech slurs, mixing up words and stumbling over my points, I CAN communicate my needs.Writing takes multiple drafts to catch all my mistakes but I DO end up getting my point across with people who understand which really helps being Dyspraxic in my case even if I am severe in many symptoms. I also am quite adapt at looking capable which confuses people.*

Many people and even professionals look at me like I am speaking a foreign language when I bring up "Dyspraxia." Dyspraxia is a disability that mainly affects motor skills but can also bring on a bunch of other difficulties. It can overlap with Executive Functioning issues, however many people can struggle with Executive Functioning yet not have Dyspraxia. For a full list of adult symptoms this is the best website: 

Dyspraxia can often accompany Autism or Dyslexia but just like there are so many variations of different diagnosis, there are so many ways Dyspraxia can present. Many people who have Autism do NOT have Dyspraxia and many people who have Dyspraxia DO NOT have Autism. 

I can appreciate Autism and the beautiful ways it makes my brain work. I can look at Dyslexia and truly believe it helps me see the world in unique ways. I attribute my amazing capability to multitask in thought and deed plus a host of other great things to ADD and while each of these things (Autism, ADD, Dyspraxia) come with hardships, they each have Neurodiverse traits worth celebrating! (See Autism Labels on the side) Yet, I have not been able to find many positives to living with Dyspraxia besides having an understanding of others who struggle which I already had from my other differences. I do believe it DOES contribute to a differing perspective on life and I celebrate the Dyspraxic's unique wiring as well, but some of the symptoms can be challenging.

I recently checked out the Dyspraxia in Adults checklist to see if any of my symptoms have lessened. To my chagrin they have become worse. I can check off every point of the first 7 headings which is extremely depressing. I have a more severe case compared to the few I know who have Dyspraxia. Sometimes I wonder if it also can come hand in hand with Fibromyalgia? Regardless, both seem a tad extreme to have together.

When I was a child I was the last to be chosen for sports teams, gym class, recess, band class and even some artistic pursuits that required movement. I knew it was not because I was disliked but because I was horrid at any type of performance. Knowing did not take the sting out of best friends overlooking me because they wanted to be the best. I was an obstacle in their achievement and not a friend during competitive moments. As we grew, they picked me more out of friendship or maturity, but sometimes I wished I could opt out to save them the trouble. Teachers were harsh when they worked extra hard yet I showed no improvements. I was branded clumsy. I found it ironic that as a Christian Private School, competitive sports and music were the main values of students and teachers and that moral "fruits of the spirit" were judged according to outward acts and performance. Luckily, I was deemed intelligent in other educational spheres (I could write because that is how I had to adapt to communicate my thoughts) so I was not branded lazy, but they required more than they should have. Many times I would come home to crash on my bed, unable to move because my brain was completely unable to keep my body upright any longer.

I mistakenly thought that I would magically grow out of these issues. I had hoped that one day I would wake up as an adult and have that super power that most adults seemed to have: Capability. Instead of getting better, I became worse. When my kids were born I was expected to take care of more than myself. It's a wonder how I survived the early child rearing years not knowing any of the diagnostic criteria I know now. I was depressed. I never seemed to "get" the cooking and cleaning rules or movements. As time passed I found the judgement or "helpful hints" more and more frustrating. I had tried it all over and over. Practice, in my case, did not make perfect. In some circumstances, practice did help me to achieve minimal results, but it never made me exceptional nor consistent. Sometimes I could tie a shoe, other days I would kick my choice of footwear out of the way in extreme frustration and wear flip flops because ten minutes of attempts did not get me my usual results. Somehow, I made it through, and found the years after age six much easier...and homeschooling helped ease all the issues I would have had to deal with on a daily basis. My kids and I are way healthier in our home, doing what needs to be done, and not conforming to society's expectations. This came with a cost. A cost I would pay over again and do pay from time to time in other's opinions or society's expectations.

The toughest part for me was feeding myself. Most people are expected to make simple meals in adulthood. Even toast was (is) a problem for me and all the decisions that go into purchasing, choosing and prepping food was too much. Over the years I have suffered multiple burns, cuts, dangerous fires, accidentally caused food poisoning and contamination, have had laughable accidents, and broken many appliances, dishes and even have BENT (yes bent!) a knife. I can not understand pressure, too much or too little, and often I forgot to wear oven mitts even if they were plainly in sight. I grated my fingers many times. Not just grazed but took off chunks. One time a knife flopped out of my hands and just missed my kid. In the end, it was safer to stop attempting any sort of meal prep. As, I have mentioned in other posts, I was lucky enough that my husband finally (after years of struggle) took over all meals and grocery shopping. The kids and I eat greek yugort and granola for breakfast every day to keep it manageable. With the help of our therapist, my husband's work schedule is different so that he could have an hour to cook lunch and be home early to cook supper. We are lucky enough to be in a position of work right now to do this but it came with it's own sacrifices and hard work (yet being perceived as lazy or not working hard.) He also helps a lot more than most fathers at home (plus home renos!) because all three of our children have special needs in differing areas - most unseen and not understood by our community- so thus we have had to learn how to live on a lesser wage because his time keeps myself, the kids and himself healthy and sane. We end up giving back more to society by seeming like we do less because we are healthy and whole.

 Luckily, my husband has ADD so he can sort of understand our brains because he is also Neurodiverse. He gets sensory overload because he has it minimally, so he can at least empathize more than most. He is creative and also thinks outside the box. He enjoys cooking on most days. He blasts his podcasts and gets creative. I felt guilty for a long time in regards to the cooking but since I do all the clean up after him, counsel our family, creatively think outside the box and organize the budget/ pay bills and many other difficult tasks that I can still somewhat manage- we have found our balance. It took a lot to get us to this point...especially in a conservative town that values traditional gender roles and the biblical version of the Proverbs 31 woman. To say we have run into sneers, jealousy, bitterness at our personal choices/ arrangement, and annoyance would be an understatement.

 It was embarrassing to go to the In Laws for supper and not be able to offer meal prep help or even sometimes clean up. It had nothing to do with being unwilling to help out but everything to do with being unwilling to hurt myself, others or dishes. What do you do when people define help as purely physical? How do you contribute to a family function when there is that miscommunication? And what happens when you also suffer from social anxiety so thus do not even seem to contribute with wit or glamour? It's easy when I feel comfortable enough with dear friends or family or when I am in my own home where I know the pitfalls and can control my environment. My awkwardness and blunt mixed up phrases bring comfortable laughter or respectful camaraderie with those who truly love. In places where I was often misunderstood, I would typically find myself playing with the kids when they were under toddler age or conveniently caught up in a conversation when it came to help out physically to avoid mishaps. That fact shows how much I LOATHE physical performance because being Autistic, I do not love empty social chit chat either (I do LOVE deep philosophical conversations!) but I would take that over many physical activities.

I am thankful for those who tried to help. Unfortunately, the help never put me too far ahead and I think that fact bothered many. People like to see fruits of their labour when they offer help. The only part of the kitchen I can master, from time to time in my life, is baking. Baking seems different from cooking and if my husband or someone else is around to take the goods out of the oven, I do not need the use of knives.  I have broken two sets of beaters and both times it was loud and scary. Some years I do better at baking and some years I completely lose the skill only to regain it at a future date. I can't predict when I will succeed and when I will fail. To outsiders this is confusing and looks like I am making up excuses but the literature on Dyspraxia explains the fact that some days (even years) we can suddenly perform a skill for awhile until we can not. There are some skills that never will happen, even with practice (cooking and driving outside my limits are mine) and they vary from person to person. With Dyspraxia I have had to find unusual ways of doing normal tasks in order to be safe. 

We do not own any poisonous chemicals because of toxicity and health, but also because I easily mixed up unassociated bottles even while telling my brain what was needed. I have to go out of my way each day to make sure the stairs have nothing on them, that the rugs are completely secured, that my knives in the dishwasher are pointing down in the ONE container they are supposed to be in. Knives are NEVER thrown in the sink because it is a guarantee they will find my hand.

I can not clean up broken dishes. I have to call my husband or daughter. Because each time I do, I misjudge the pressure or distance of the object and slice open myself. Many people would think the daily habits I have to get through the day are due to OCD but they are just vigilant behaviours to keep me or those around me uninjured and alive.

There are moments I am occupied with something I love, like decorating, and am generally really good at, but if I have had an overwhelming day in any other regard (sleep depravity, social appointments, menstruation, being hungry ect.) suddenly my skills can seem obsolete. My husband heard me mumbling with frustration because I was decorating a mirror and the greenery I was putting around it fell down six times before I got it right. It would have taken him ONE try but typically, if it's something I enjoy, I prefer to work at it till I get it myself. It does bother me though that a simple task can be so frustrating and my body is uncooperative. Unfortunately, there are days where I reach my limit and give up completely. Sometimes giving up is the bravest decision and it takes strength to know our limits and listen to our body.

My son has Autism but he does not have Dyspraxia (he has other additional diagnosis.) He is capable of riding a bike or moving the dishes without breaking one. I look at his ten year old self or my daughter's eleven year old capabilities and sometimes I feel inferior in the physical realm. My youngest is Dyspraxic like me and I understand the frustration of working with someone who can not grasp simple tasks. Yet I know his frustration is double at himself more than anyone could feel towards him. It is continually frustrating to not be able to perform daily activities. Most Dyspraxic adults are highly individual. We like our independence. We crave being able to do what we want to do. It can be absolutely humiliating to ask for help day after day with tasks that can seem so simple. It's also annoying when people hear about our struggles and decide to stay away because they are afraid we will misuse their help.

We will mostly underutilize help because sometimes "help" makes our issues worse. We compromise certain movements or do them in unusual ways which sometimes can require privacy. Help means putting all these issues into the spotlight. My grandmother sometimes comes to randomly help me with my house. While I appreciate the gesture, this also requires ME to clean alongside her normally. In the end, I become more exhausted than doing it in my own unusual way. It also means the next day I will probably have more executive functioning fails than usual. I don't mind if she takes my keys while I am gone for the day and scrubs up my sink to her liking (if that makes her happy) but I do not want her to expect me to keep it up to that standard or for her to measure my cleanliness by my abilities.

This fact also plays into hygiene. Since I have been a teenager the Dentist always tell me that I am either over brushing or under brushing. They show me every time how to apply the right pressure, and I go home and have no idea if I am applying the needed movement for perfect teeth. Showering and shaving can be dangerous. I have a certain routine I must perform to keep injuries to a minimum and often I still end up with lots of cuts and bruises on my legs. I am always full of bruises from daily life.

Each time I go to physiotherapy, my therapist has to point her hands to the direction she wants me to go because it will take me too long to figure out right from left. She also has mentioned multiple times that I am TOO flexible and double jointed but one would never know because my muscles are so weak I can barely perform any actions. This double jointed flexibility causes me to over reach or underestimate a movement. I do not drive beyond my home streets unless it is an emergency and by the end of it I will be a nervous wreck from having to be hyper aware of all the movements that go into driving a car that other people simply go on autopilot for. I am constantly bumping into people, spilling things, and have never been able to ride a bike, throw a ball to someone accurately, or dance. I LOVE the concept of dancing. I used to long to be able to move like a dancer. I will dance in my living room but often it ends in tears from either bruises or awkwardness. The only time I can dance is when my husband takes me in his arms, allows me to step on his toes, and leads me around buffering me from any couch edges or inconvenient walls. Walls look so far away to me but yet are right there... I have walked into our walls many times.

I could give many more examples of daily living fails. If you want to understand someone with severe Dyspraxia, mindfully be aware of each task you do in your day...including breathing and walking...and think of how it must feel to consistently mess it up or have to be aware EVERY day of possible injury. My eldest two children and my husband surpass me in most daily movement activities. They have to make up for my lack of balance, muscle control or ability. This fact is DEVASTATING.

 I will try to achieve what I can. I contribute to the health of our family in many emotional and intellectual ways that it balances out but my ways are more unseen. It is sometimes a vulnerable position to be unseen yet be enough an of an anomaly to draw attention. In an achievement world, it is hard to not be able to show most achievements. In my world daily activities ARE achievements. I get giddy when I actually throw a ball into the net or when I suddenly am able to do a dance move. Those moments are very rare for me and when they happen I am delighted. I can not get disability even though I would not be able to work due to Dyspraxia (and other differences I have and anxieties) because it is not recognized as the extreme disability it can be.

Dyspraxia sometimes feels like the bane of my existence. About twice a year I break down over all of the fails and daily challenges. I sob and beg the powers that be to take Dyspraxia away from me. It seems dramatic but an unseen disability is just as traumatic as a seen one. Especially a disability that can take independence away or that has at least a few moments each day that are hard to cope with. I may have a list of "Can'ts" but I also have a list of spiritual enlightenments and aha moments many people will not master in their lifetime. Each difference comes with some good and bad.

One positive fact of living with severe dyspraxia is not defining myself by achievements. Because if I did, that would mean on most days I am worthless. I do not believe I am worthless, however, I have had moments when my self esteem is incredibly low because my eleven year old knew what to do and how to perform a task better than I did. In the privacy of our home it can sting a little but out in public it looks neglectful. I have had to learn that it is ok to look like what I am not. I have had to believe confidently in my worth and my actions despite how I may come across. I have had to fight for myself, my moments and my safety.

My biggest fear, when the kids were little, was that someone would find out how hard life was for me and would deem me as an unfit parent. I never really talked about my struggles in these areas. Now that the kids are older and I have the power of my therapist, best friend, husband and small community I have built for myself, I know that my kids would not be taken away without a fight of support. I know people see I AM capable. In fact, often people see me as more capable than I actually feel I am. Because I am hyper vigilant they think I am the best babysitter safety wise (probably I am in some cases but it is EXHAUSTING) or a very put together person because of my confidence and ability to mask for short periods (or at least get through things with different strategies.) I do believe in myself strongly and my gifts but that does not negate the struggles.

This story is the one people misunderstand the most. It is the part of my life I am most wary about sharing. The only reason I am putting it out there is because it hurts. Some days it completely lays me bare with gut wrenching grief at some of my limits. I know that perhaps someone else will be hurting too...and maybe they can find this post and know they are not alone. I don't have answers for living with Dyspraxia but I do know that it is important to leave the tasks that can not be done to others, and find alternative ways of doing things that work the best for you personally. It's important to find a way to live outside the box of society yet still contribute in some way! Most of all, I hope that anyone who suffers from severe disability can look at themselves, despite the suffering and see worth. Even if it is not severe Dyspraxia or disability your struggle is STILL legitimate. In anything, there are good days and bad days. Celebrate the good, get through the bad any way you possibly can and give yourself grace. It's easy to feel alone in these invisible struggles (thus my song choice), but you are not alone. I need to remind myself of that fact often, and perhaps this can also be a reminder to you.

*I found an incredible lack of pins on Pinterest for Dyspraxia so I created my own which can be found here with the written quote underneath:
I would also recommend my 'Quotes I Believe In' board to inspire you on your life path OR if you are an INFJ/INFP that board also has some encouraging pins:)

Post Edit 2:) A friend sent me this post on Dyspraxia and I thought it was beautiful too:

Tuesday, January 27, 2015

Confessions of an Unschooling Mother; Links on Education, Rethinking Traditional Methods of Learning to Read and Write

**If you read the first linked article you would see this is an example of age 4/5 proprioception...because it is drawn by a 71/2 year old boy who had constant fluid in his ear and infections up until age 5 (and the need to be in the Children's Hospital) as well as extreme visual problems we did not know about until age 3- it makes sense that his brain body awareness (and management for handling instructions ect.) is at a current age 4/5 level.  He also has multiple diagnosis including Dyspraxia, HOWEVER, he has an incredible mind that knows more information on the species and types of animals and inventions than I will ever be able to remember. That is his natural state and it's beautiful. Because of this, it is important NOT to force reading, writing, phonetics ect. until his brain body awareness have matched each other in complete 3D before moving on to other activities. It is important to strengthen instead with movement, imagination, considered and patient instruction, and meeting him where he is at.**

Sometimes I sit in bed panicking about my child’s preparation for this world. I wonder if I am being “wrong” in teaching methods. Every now and again, I see a child way younger than mine perform at a higher level. I actually celebrate them and their natural progress (or their uncanny ability to memorize and mimic which is also a celebration in it’s own right) but I also wonder, "Am I doing my child a disfavour?"

To be honest, it’s tough to be so against the grain in my schooling methods and beliefs. Many people make the vocal or silent judgement that I am failing my kids when my children do not reach certain milestones at certain ages. When it is found out my children are homeschooled, I have experienced random quizzes of math at grocery stores, strangers asking my kids how to spell basic words or  constant questions from family on what they have worked on (and of course measuring their schooling with traditional schooling mindsets.) 

There is a collective pressure to ACHIEVE, COMPETE and SUCCEED. Sometimes I get panicky before a dose of common sense sets in. One of my children is seven. He still draws stick figures at about an age 4 level, still can not write and does not read much. When he does read he astounds me with his knowledge of some BIG words but often he prefers to hear me read and he certainly does not understand phonetics - no matter how many times I attempted to teach them in my prior ignorance. 

His body awareness is still happening and he is still developing those neural pathways. I made the mistake of doing heavy occupational therapy with him last year only to find out months later that he was secretly bothered by it. He felt like he was dumb and different. I think OT can be good. We were doing a Handwriting with no tears program, and while it was good, it did not match him NOR was he needing to be at that level yet. It was a mistake of mine. Every child is so different, but from what I have read, if kids are left fairly naturally to imaginative play, education WILL happen more naturally and instruction can happen more around ages 7- 12 depending. 

I have realized watching him that he is his own type of brilliant. He has this moral integrity that can not be taught, massive amounts of energy, and a ton of love. He has profound thoughts when he decides to open up about them and his play is creative and sharing and only needs guidance at critical times of boredom or misbehaviour. He takes life and LIVES it and that more than anything, is where I want him to get his value from.

When I think hard upon it, I have no real concern about his future to be honest. I know HIS future will be HIS because that is who he IS. He will do anything he sets his mind to eventually- at his own pace. Of course, I still teach things but sometimes I see his peers mimic back words memorized or things accomplished (i.e. riding a bike which he was JUST ready for last summer even though his older brother was ready for a two wheeler at an early age) I start to doubt. 

Tonight I doubted yet again so I googled it and the first article that popped up to my question was EXACTLY what I needed to hear. I honestly think it’s an excellent read for any mother or child because it explains the neural pathways and differences in learning and what our schools need to start changing:

Frankly, I was relieved reading the direct biological evidence to learning...and that the schools have it a bit wrong too. Yay for puppets, knitting, making, drawing, playing outside, sharing, reading TO him, and tons of free time to exercise those muscles that are still in development for him! I knew  from my prior Early Childhood Development studies that his pictures of people are about age 4 level (The article states that this shows he is about at that age for processing still.) One day that won’t be the case but for now he is his own delightful existance. I am savouring who he is NOW. Who knows what the future holds? Most likely he will move on eventually. Right now, this is my son whom I love, and while I will not stunt his growth purposefully, I will also not force it with memorization or continual practice…in time, everything has a time, and his may be longer in this regard, but there are so many beautiful things along the way.

I wanted to throw the article out there for support in case you ever lay in bed panicked like I did, or become discouraged at what our world titles “progress.” (Or if you are concerned that I am doing him a disfavour- if that is the case it is even more crucial that you consider the research behind my methods which I have dedicated hours to. There will be mistakes in this and consequences like anything in life but also many benefits and they are what I am willing to live with.) 

My community of friends and family have also helped form some of my conclusions either by agreement or disagreement. I have observed carefully both fully grown adults of the school system and homeschooling system and both types of children currently. The conclusions I have come to suit MY life, and my children...but the biggest factor has been observing the fact that in adulthood, the most content, loving people are the ones who have learned how to BE in the now, regardless of circumstance or knowledge or talent. Yes, those factors play a part in existence, but a balanced life is mainly about attitude and presence.

Sometimes even when you know what you are about, you need to be supported once again, or inspired. Ignore anything that can not enhance your personal story. We each have different stories and traditional schooling also has many benefits and delights! Yet, if your child is in the current system, and seeming to be “behind” consider these articles and remember that brain development has it’s own place. Often the ones who seem ahead in the early years do not necessarily stay ahead in adulthood. Life is about attitude, morals, choices, and mindsets. It’s about feeling worthy and giving worthiness…it’s about love…and if your child is excelling in any of those areas, you really do not have to spend the night fretting over milestones or accomplishments. Even those who accomplish little can still BE…and in BEING we BECOME love and that love can not help but garner love and find ways to LIVE.

For more on this topic a few of my favourite resources are (links in Author's name):
  • Kids: How Biology and Culture shape the way we Raise Young Children- Meredith Small
  • Home Grown: Adventures in Parenting off the Beaten Path, Unschooling, and Reconnecting with the Natural World- Ben Hewitt
  • The Magical Child- Joseph Chilton Pearce

    *For more great articles and quotes see this Pin board:

    Disclaimer: There are MANY ways to educate. I understand the innate privilege of being able to CHOOSE how to educate my children and also to have the privilege of staying at home to do so. As I have mentioned in a previous post- we are under the poverty line and while I would not consider us poor- we are definitely privileged and blessed but we are not at a place of FULL stability either. We are careful. My husband works in Construction which enables him to work less hours for more money and we value our family time. We are glad we invested in his Journeyman even though it came at great cost to us. We are honoured that he has the physical capability to work hard at a job that is one of the most dangerous jobs to do everyday. Everything comes with sacrifices, and our ability to live  on less hours of work for him came at a cost- but a cost we are willing to pay. We have had many circumstances work to our advantage (like being able to get a mortgage at age 24 with the company my husband was in construction with at the time) and in that regard, the decisions we have made and the people who have guided us- have mostly been ones that have given us a higher quality of life than what it seems we should be able to afford. We ARE privileged and we have also worked hard to make good decisions and use our gifts and support system. It's a balance. Many people say they cannot afford to home school, but being slightly under the poverty line, WE HAVE and we find it more cost effective then having me work or sending them to school. It depends on the situation and there are ways to work it out. THAT SAID, I live in an amazingly supportive place with a beautiful provincial policy on homeschooling. I love Canada and it enables me to have some privilege of freedom. I am speaking from a place of privilege. I understand MANY do not have this privilege I have. I believe the school systems desperately need to change. Please read the article sourced below and the books and links above to see the steps on how to do this. It starts with our mentalities as a society.

     Quote from article below "So what do my students need, then? Access to the same funding, opportunities, and “exceptions” afforded to privileged, affluent students.
    They need a society and educational system designed to actually meet their needs, instead of a society that passes laws to keep them constantly underfoot and an educational system designed to test them to death and tell them how they are inadequate instead of educating them."

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