Who will YOU see?

I cannot be happy enough to see 2017 close it’s doors.

I had thoughts that this year would look so much different. And while this year and its events have kicked my butt…..there were good things about it, I’m pretty sure.

I can’t think of too many at the moment, because of the severe brain fog due to mental exhaustion and stress.

Between the spring and the issues surrounding Jeremy and the High School; between the summer and all the fighting between my boys; between this fall and finding out that my baby has perceived trauma due to being a sibling of autistic brothers, to school refusal, complete out-of-your-senses panic, and therapy……lots of therapy; between helping one child feel safe within his school and with his teachers to advocating that they see the person and his strengths and not get sidelined by the “side effects” of his disability; from moving my babies into their own home; and doing so much more with my own creative endeavours, than I ever thought possible……..it’s been too much.

Many things and many people have been set aside as I try to survive. There is no thought of thriving and I’m eternally grateful for the opportunity to escape into art and creativity……because that small part of my life means that I’m not lost.

I’m not lost to chaos.

I’m not lost to meltdowns.

I’m not lost to advocating.

I’m not lost to lack of knowledge or understanding.

I’m not lost to special needs or trauma.

I’m still me.

But me…….
She…….
I…..
I am exhausted.
I am barely treading water.
I am in a tough space.

I like to say that seasons change and I know they do. I believe that I have more strength than I realize. I believe that I am capable of handling a whole lot……I know this, because I’ve had to.

And yet, I’ve never been more closer to giving up.

I’ve NEVER been this weary.
I’ve never wanted this badly to run away from everything and everyone and never be found again.
My sense of responsibility has been taken to the end of itself.

To. The. End.

Physically, I’m tense, like muscles in knots, headaches and migraine, tense. I can’t sleep. I’m exhausted. I can’t focus. I have to write lists to accomplish anything. And even then, I stare at my list with a blank sense of uncomprehension. I see people doing human things. Regular things, like going for coffee or a walk or popping out to the store to pick something up…..and I can’t even fathom how that’s a possibility for them. It’s Herculean effort to exist.

Do you understand?

Can you even comprehend?

I share because I know I’m not alone. I know there are others out there who feel like this and blindly and stumbling keep putting one foot in front of the other, not knowing how but knowing they have to. Doing everything in their power to reserve the strength that they don’t have while pretending, as best the can, to deceive themselves into carrying on because there is no other choice.

——-

I am walking away.
I’m taking my crazy with me and we are all running away. We will put our toes in the sand. Pray for sleep and regulation. And hope that we can recharge in the sunshine and the water.

——–

But there are many, like me, done. Tired. Exhausted. Worn out.

Look for them.
Find them.
Love on them.
Let them know you see them.
Let them know you love them regardless of their ability to give back.
Let them know in a tangible way, that you see them – that you care.

———–

Some ideas: (in no particular order)

– Take a meal
– Give a Gift Certificate
– Drop off a coffee and donut
– or a bottle of wine
– take a kid out for a treat
– clean a bathroom
– clean out their vehicle
– give flowers
– offer to watch kids
– do a 10 minute tidy
– ask how they are doing, really listen and be okay with a hard reply
– connect and say hi (by text or email) and don’t expect a reply
– send a card to say you’re thinking of them
– learn about what they are dealing with (autism,ABI, ADHD, TBI,
DS, FASD, trauma, divorce, addiction, mental health, cancer, grief, etc)

There are so many ways to connect without putting more pressure on ones who are already tapped so far beyond what’s emotionally possible.

This holiday season, I’d love to challenge you to “see” someone, to hold their challenges with respect and reverence, and to be a support in ways that are meaningful to them.

It may mean being okay with the messiness (emotional, mental, physical and/or spiritual) that often accompanies our lives.

But it will be worth it! I promise!

Dear School System…..

To the School System,

This year has been an extremely tough one for our family.

I’ve been a parent in the School System for 15 years, and was a student, myself, for 13 years (K-12).

I had no issues.  I found school to be easy….probably too easy.  I definitely didn’t try hard enough and still got mostly great marks.  Sure, I re-did Math 10 (3rd times the charm, right?) but I didn’t care one bit about sin/cos/tan or graphing.  Never have used it.

I believe that over the past 11 years, my sons (and I) have been repeatedly traumatized by the School System.

I understand that is a weighty sentence, but I fully believe it to be true.

Trauma is described as a deeply disturbing or distressing experience.  It doesn’t have to be a death or violent event for someone to perceive a situation as traumatic.

Complex trauma is:

  • Chronic
  • Begins in early childhood, and
  • Occurs within the child’s primary caregiving system and/or social environment

Typically, complex trauma exposure involves the simultaneous or sequential occurrence of child maltreatment and may include psychological maltreatment, neglect, physical and sexual abuse, and witnessing domestic violence.

Exposure to these initial traumatic experiences, the resulting emotional dysregulation, and the loss of safety, direction, and the ability to detect or respond to danger cues may impact a child’s development over time and can lead to subsequent or repeated trauma exposure in adolescence and adulthood without supports that might buffer the negative effects.

 

I have two sons that have experienced repeated distressing and disturbing experiences within the school system.  They both have a diagnoses of Autism Spectrum Disorder, Anxiety, ADHD and Learning Disabilities.

Cognitively, one son is average and the other is superior…..that also brings in another layer of complexity.

We have fought on behalf of our boys, for the last 11 years.

There has been misunderstanding of their specific disabilities and needs.
There has been mistreatment by well meaning but un-informed teachers.
There has been GROSS misjudgment of stress behaviors.
There has been repeated segregation, alone, in medical rooms.
There has been denial of child specific supports as defined by diagnosis.
There has been brutal bullying with no consequences for the bullies.
There has been denial of access to opportunities because of disability, with no support.

There has been repeated emotional and mental trauma which has also resulted in physical strain on both of my boys.

It doesn’t stop there.

What affects my boys, effects our entire family.  Our family of 7 is precariously balanced on the best of days….Neuro-Diversity, and Mental Health are tough loads to carry.  Throw in any mental and emotional upheaval and there is no balance….we come crashing down.

My boys are resilient in the fact that, they get up every morning full of anxiety for what the day will accost them with.  Every social interaction is fraught with anxiety; and requires that they must decode idioms, expressions and body language.  This “social language”, that we take for granted, is foreign to them; and they struggle with learning it.  Not because they don’t try or  want to understand, but because they have a neurological difference that makes it difficult to do so.

EVERY DAY is filled with stress…..with anxiety……with sensory overload.

They don’t get a break from it.

And yet they carry on.

My boys keep walking into your schools EVERY DAY knowing that at some point they will be mentally, emotionally, or sensorily assaulted.  Maybe not on purpose, but it happens just the same….

If I slam your hand in a car door by accident and then apologize, does it make your fingers any less broken or painful?  No, the trauma is still there.  Imagine how you would feel, if people repeatedly slammed your fingers in doors.

You’d probably end up extremely jumpy and tense; and mistrustful of those around you.  It doesn’t matter how much they seem to like or try to understand you, “survival brain kicks in and reasoning and logic shut down.” In fact, you’d probably not want to go where people and doors are.

But everyday, my boys continue to enter your doors, and try again……it’s insanity, really.  And I feel like I’m perpetuating the insanity….the trauma…. by encouraging them to continue to “go and trust”.

They are so very tired.

And I am so very tired!

  • I am tired of holding them when they come home crying because someone misunderstood their diagnosis and their heart.
  • I am tired of fighting every year to say the same thing and not being heard.
  • I am so very tired of being seen as someone causing conflict or someone on the “other side”.
  • I am exhausted from scraping up a weeping child who has been judged incorrectly as defiant or non-compliant.
  • I am exhausted from dealing with meltdowns as a result of pressures placed on them at school, to live up to “typical” standards.
  • I am so very weary of encouraging my children to go back to their teachers and EA’s to work “issues” out, when I believe that my child is being hurt (however unintentional) as a result of lack of knowledge and understanding.
  • I am angry that I have been fighting for 11 years for people to “see” my children….to see beyond the the stress behaviors and see their heart.
  • I am so exhausted  and traumatized from the past 11 years, that I cannot even fathom continuing to advocate for my children.  I cringe at the very thought of connecting with the schools to advocate on behalf of my boys and yet….. I must advocate for them because I am SO concerned for their mental and emotional well being, in regards to their care and treatment within the school system.

 

Dear School System,

How can we change this?

How can we affect change within our school system, so that children like mine are not traumatized on a daily basis?

How can we affect change within our school system, so that children like mine are recognized for the value they bring?

How can we affect change within our school system, sooner rather than later?

  • Do our children have the right to access a place where they can be encouraged to love to learn?
  • Do our children have the right to have the same opportunities as their “typical” peers?
  • Do our children have the right to access safe places, mentally, emotionally and physically, to learn and grow?

Right now, this is not the case….my children (and many others) are not being taught, trained  and encouraged in safe and meaningful ways, within the School System!

How can we fix this? How can we work together to accomplish this?

ps. It is not my intent to disparage any specific teachers that my sons have or have had.  I feel very strongly about the brokenness of the School system, specifically in regards to special needs children.  I feel that there is a HUGE lack of knowledge, in regards to working with children that are Neuro-Diverse.  I believe that there are a lot of teachers and staff are that are well-intentioned but unfortunately, unknowledgable regarding neuro-diversities.

There is a WEALTH of information available.  I’d strongly suggest Stuart Shanker’s Self Reg as a great starting point….not only to aid with Students but also with Teachers and all School System Staff, in dealing with their own stresses.

 

Just a glimpse….

I’m sitting in my living room, looking wistfully out the window, knowing that I’ve already spent my fair share of time outdoors, today.

I don’t want a sunburn and while I slather up when necessary…..I’ve never really liked the feeling of lotion on my body.  So I opt for some indoor time….at least until I need to pick up the boys from school and then I’ll greet the sun with smiles and a spritz of sunscreen.  Until then, I close my eyes and reminisce of the golden warmth soaking into my soul, revitalizing me.

When I open my eyes, I see evidence that Judah’s been here. 


The dregs of his Honey Nut Cheerios and Almond Milk make me smile.  This boy of mine is such a gift.  He is an incredible living paradox.  Verging on the edge of violence in his stance against injustice…….and yet indiscriminate in his compassion.  Have I told you about the time we took the boys to see Guardians of the Galaxy Vol. 2 and he cried when Ego was destroyed.  He clasped my hands to his heart and whispered through his tears,  “But WHY? Everyone deserves another chance?”

I don’t ever want him to lose that heart for others.  I will fiercely protect and nurture that empathy, tenderness, and humanity with all my being. He is such a gift to me, to us…..to the world.


I look over to my right and see glorious creativity within the chaos of these walls.  That stack of mail will become “creations” before it hits the recycling bin. I savour the moments when I can sit, drink my coffee and knit a few rows on a dishcloth.  I like small projects because I can finish them in between all the glorious distraction.  More often than not, that coffee grows cold and my knitting is interrupted but it’s ok because these moments don’t last.  

The screams to break up a fight or get a snack for someone……they are becoming fewer.  The yelling because there is no toilet paper on the roll and no one thought to look in the cupboard…….or because someone ate someone else’s ice cream.  It’s still there but I’m less needed than I used to be.  Which is good cause there’s still a whole lot of needy people in the family and I’ll take whatever reprieve I can get.  

Moose – aptly renamed – as he’s not the smartest cat in the world……but he’s exactly what we needed.  He gives his love freely and unabashedly.   He allows for over excitable autistic hugs and purrs louder than I’ve ever heard from a cat.  It’s like audible Valium to soothe our souls from whatever anguish and trauma we may be experiencing.


I need to pick the kids up.  To leave this cocoon of quiet chaos.  I don’t want to.  

Illusions of Beauty layered on Brokenness

Today’s been a hard day for me.

Jon and I have been discussing getting away as a couple.  We need it.  Desperately!

Trying to sort out care for our children is hard.  It brings up insecurities and hurts from the past; and while there are truths that I know, I struggle to move beyond the feelings.

So many tears today. So many feelings.

I watched a TedX talk today and while it was an incredible talk….it highlighted things that I stuff, in an effort to cope.  There are stressors, as special needs parents,  that we just can’t escape or lay down and walk away from.

Exhaustion
Inadequacy
Trauma
Rejection
Brokenness
Grief
Judgment

There are times when I feel capable to carry on.  Other times, like today, I don’t know what to do.  And the tears fall, uncontrollably.

In an effort to pull myself back together and because we are supposed to be going out tonight (to connect with other parents of ASD kids), I do my hair and put my make-up on.

I layer on cover up, foundation and powder, in a effort to combat the destruction of a day of tears.  I  paint on my best smokey eye and in whispers, threaten myself to not mess it up…..as if sheer willpower alone, could hold the tears inside.   I curl my hair and back-comb it into submission.  It’s something I can control, in this uncontrollable chaos that is my life.  I spray on layer after layer of hairspray creating a shell, a protective layer of armor.  Creating the illusion of beauty on top of a layer of brokenness.

That should be my new tagline……

Illusions of beauty layered on brokenness.

 

Don’t Pick Up The Rope

Imagine that you are a child, standing on the edge of a cliff. You look up and on the other side of a deep gorge is another cliff. You look over to the side and there is a rickety looking string bridge. You aren’t certain of its ability to carry you safely across to the other side, and so you refuse to move. All your friends are on the other side and it looks like they might be having a lot of fun. But you refuse! You aren’t really sure how everyone got over there, but that bridge looks unsafe and safety wins out over fun, every time. You decide that you are not going ANYWHERE.

People suggest that you come over to the other side. You want to but……….refuse!
They tell you that you have to come over. You really aren’t sure if it’s safe…….so you continue to refuse.
They start to insist that you come over. That isn’t helping, you feel pressured and uncomfortable…
Voices get louder, more commanding and more demanding. You continue to dig your heels in and refuse to comply.

The harder they pull, the harder you pull…..just trying to remain safe.

 

All of the sudden you realize that people are pulling and forcing you towards the bridge.

You resist.
You yell.
You’re scared.
You scream.
You panic.
You start to thrash and flail.

You do anything to protect yourself from the uncertainty of what’s before you. In a blind panic, and completely incapable of rational and reasonable thought, you bolt. You run. Or conversely, you curl into a ball and cram yourself into the smallest corner available, so that no one will be able to force you into, what you are sure is, an unsafe situation.

How many times have we asked a child to do something and then been frustrated when the situation devolves into anger, defiance, rage or physicality? You don’t really understand because what you’re requesting is not something weird or terrifying. It seems a pretty simple request and yet……..the child is labelled oppositional, non compliant or defiant.

I hate those three words. Very rarely are those accurate adjectives to apply to a child.

I believe that we need to approach children from the viewpoint that they WANT to please and they WANT to succeed. If behaviours arise that appear contrary to them pleasing and succeeding, WE NEED TO PAUSE.

We, as the adults, need to question “What is at the root of the negative behaviours?”

Why this this child feeling anxious?
Why is this child feeling insecure?
Why is this child feeling less than capable?
What is feeling overwhelming to them?
What is feeling uncertain?
What is unclear?
What information are they missing or unsure of?
How can I help?

Going back to our picture at the top of the post…. Here is a different view of that situation.

You are, a child, standing alone on one side of the cliff. You are aware that you are missing out on what seems like fun on the other side. You feel alone, anxious and unsure. You are desperate to feel accepted and safe; and while you wish you could go over, safety wins over fun, every time. You realize that someone is calling your name. They crouch down beside you and ask if you’d like to join the rest of the class on the other side. You aren’t sure how to answer because you are scared. They start to explain what the rest of the kids are doing and it sounds SO fun. It’s too bad that the bridge is the only way over. They explain how the bridge was made and how many pounds it can carry; and that makes you feel a bit better but you’re still not sure you can believe them. They call another kid over, who crosses that scary bridge, and together they show you how two people can cross the bridge. You are still unsure. They tell you that it’s okay and that they will stay with you on this side. That makes you feel a bit better. They share a time when they felt scared and uncertain. You want to join your classmates but you really aren’t sure. You realize that the person isn’t going to force you but will stay with you and that makes you feel a little bit safer and a little bit stronger. You eventually agree to try to cross the bridge even though you still feel scared. It might take you longer, but with acceptance and relationship you can accomplish amazing things.
Instead of calling for the child to take action and then labeling them as non-compliant, what if we made the effort to understand and accept?

What if we stopped pulling on the children, which is only increasing their anxiety?
What if we didn’t “pick up the rope” in the first place?
What if we joined them, and validated their feelings and emotions without having to fix or change them?
What if we made sure they knew and understood the facts and information? 
What if we found out what they were fearful of?
What if we explained how the bridge was made and why it is, in fact, safe to cross?
What if we explained exactly what was happening on the other side?
What if we told the child that we would cross with them?
What if we gave them the power to make the decision and until they did, we sat with them and gave them the opportunity to feel safe and accepted?
What if we built relationship instead of building conflict, opposition and disconnection?
What if we allowed the time and space for a child to feel safe?

I believe that this scenario plays out, at some point, with all children but that it’s especially true for children with anxiety, special/high needs and neuro-diversities.

It’s important to recognize that the majority of opposition and non-compliance stems from anxiety and insecurity.; and that we have the ability to make a difference in the way we view and approach children. We need to look beyond the bravado and indignancies of anxiety and insecurities; and see the cries for help.

We need to build trust and relationship instead of building conflict and disconnection. We need to join with them, where they are at; and when we have built a solid relationship founded on trust, we will go so much further than we, or they, could dream or imagine.

Don’t pick up the rope!

Frogs Jump – I am a Work in Progress

I am SOOOOOOOOO excited……like a giddy schoolgirl on Christmas Morning excited.

Frogs Jump Title
Click here to check out the book

Go ahead and click on the first page and it will take you to a preview of my book. It’s still not quite finished. I’ve got work, still, to finish up the cover and what I’d like to consider is my signature End Page……ha!

This process has been incredibly exhilarating and exhausting.

I am loving seeing my dreams come to life. I’ve dreamed about writing books since I was a little girl. I dreamed and dreamed and dreamed and dismissed those dreams as frivolous. Anxiety, Self Condemnation and Judgment told me that I was ridiculous to even think about doing something as silly as writing books; even though I spent hours enthralled within the worlds inside my childhood books.

So, I dismissed those dreams. I pushed them down and tried to ignore the longing to “ignite wonder” in children’s minds. Over the years, I’ve written many little stories and songs….mostly for my children, about my children…..and told and sung them to my children.

Seeing this book unfolding and coming to life……it feels like I am starting to breathe after holding my breath for far too long. You know that moment when you break through the surface of the water after being under for a moment longer than you can actually stand…..

And yet, it’s terrifying and exhausting. I feel like I’m in an epic battle.

I feel determined that anxiety won’t win this battle and yet everything in me wants to go back into hiding. It feels safer there (except that whole drowning thing, doesn’t feel all that great). It’s less vulnerable to just keep things status quo. It’s hard to put yourself out there, especially when there is still a huge part of you that doesn’t really believe that you have anything worth contributing. And it’s those thoughts, that I’m determined to…..to… prevail over.

It often feels too terrifying, too exhausting, too overwhelming……to move forward. And yet, I’m holding on to the life giving moments as well and trusting that I’m ready and able to take these next steps.

I don’t even know what the next steps are….but I’m going to figure that out. I hope you’ll come along for the journey. It’s always better to do things with your friends, than to do them alone.

Listing Heavily

DSC_0475

I have this skewed idea that unless I have something amazing to say or some point to make or something else incredible that it’s all a waste of time.

Which is ridiculous, given the number of times that I’ve come on here and just blathered away.

And basically, it’s what I’m about to do right now.

I’ve been thinking about “writing” all day today. I’ve been musing about “this” topic and “that” topic. Wondering about whether I should write another poem or share on a topic dear to me, or whether I pick a journal prompt and write about that.

I’ve basically been stalled and hung up on the fact that all my thoughts are stuck inside of my head. Which was sort of the point of me wanting to write MORE…….

So, here I am……last thing at night…..sitting in front of my computer…….struggling.

That seems to be the soundtrack of my life these days. Everything’s a struggle.

And I hate it.

I have this desire that people will see me. Will see my life. Will see how much I’m struggling and yet…

I want to be able to encourage. I want to be able to see the positive. I want to be able to share the light in dark situations. I want to find the positive amidst all the crap…..but it takes a whole lotta shoveling to be able to find those tiny bits of positivity.

I keep looking.

An intense situation arises and I want to sit down and cry; but I attempt to shift my focus to find a positive within the negative situation…..

And as much as that’s a good thing…..I think that what I’ve ended up doing, is not allowing myself to acknowledge the crap. It’s like I want people to validate how tough this “life” of mine is yet, I don’t think that I’m allowing myself to really absorb it all, to acknowledge or validate the fact that this is tough…..like really, really tough.

Now, I’m not talking about wallowing…..or maybe I am…..I don’t really know, yet…..But I think that there must be something to this…… to this idea that I feel overwhelmed and as soon as the emotions get overwhelming, I shut it all down.

Did you read what I wrote yesterday?

Breathe
Shut it down
Try again another day

Ya….that’s what I’m talking about……….I start to feel and then….I shut it all down.

But I know better….

Even that statement…..why am I belittling myself………I know that you can’t just shut the negative emotions down…when you shut down your emotions…you shut them all down – the good, the bad and the ugly.

And maybe that contributing to why I’m feeling a bit……blah…..these days. I’m not really excited about anything. I truly believe that just straight exhaustion plays a huge role….but how much of the whole happiness/sadness yo yo am I missing because I’m doing everything within my power to hold myself at an even keel, even thought this ship feels like she’s listing hard.

Would I feel better if I grieved hard for the the life I imagined?

A part of me is just so scared that if I allow myself to “let go” and truly feel – that my ship will capsize and sink (to continue with the ship analogy).

And that scares me more than anything…….

Unraveling

I’ve been feeling so very, very frustrated.  I love to write.  I love to use words to tell a story, to share emotion……and yet I’ve been feeling so………blocked, shattered, fragmented…….

I don’t even know what the right words are.  But, I want it to change.  I’ve been seeing an incredible counsellor who is such a blessing to me and my family.  And I’m hoping that I’m working through/on some things that are contributing to this…..to this……to this frustrating time.

But,  I’ve decided that I’m going to write…..I’m going to write something each day (that I can) {you like that little “out” I just gave myself?}  and hopefully, maybe this will help me to start unraveling some of this mess inside of myself.  So here goes….

My thoughts are jammed up, crammed up

Within the confines of my mind

Desperate to be sorted

Knotted like a ball of twine

The harder I pull

The tighter it gets 

Choking off breath

In its fierce grasp

Panic sits there

Mocking, taunting, hurling insults

That I can barely process and yet…

Each one lands with a jab

Piercing through the armour of exhaustion

More pain, more wounds, more healing needed

Drawing from an already depleted account

Breathe!

Shut it down!

Try again another day.