Warriors Among Us: Nelson Mandela.

Warriors Among Us: Nelson Mandela.

Warriors are so because they don’t shrink back from the fire. They are young, old, sick, healthy, the apex of a cause or an engaged supporter. They are vocal and loud or quietly further an aim. They are among us, within many of us; and we honour them.

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The Invitation

This morning I’d like to invite you to visit The Invitation with me.

It’s a departure from what I typically write about and the words are not my own; but they might as well be. It is spoken straight from my heart.

This poem was shared with me by Ketan Lakhani, a dear departed friend who was a facilitator/mediator in the Apartheid era.   To me, this poem is an anthem for my life and what I yearn to know about the people whom I meet.

Over the years and with new readings of this poem I notice that there are different sections that move me depending on what is happening in my life. Right now, one that stirs me is this one.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

Here it is, The Invitation.

The Invitation by Oriah

It doesn’t interest me
what you do for a living.
I want to know
what you ache for
and if you dare to dream
of meeting your heart’s longing.

It doesn’t interest me
how old you are.
I want to know
if you will risk
looking like a fool
for love
for your dream
for the adventure of being alive.

It doesn’t interest me
what planets are
squaring your moon…
I want to know
if you have touched
the centre of your own sorrow
if you have been opened
by life’s betrayals
or have become shrivelled and closed
from fear of further pain.

I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

I want to know
if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you
to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations
of being human.

It doesn’t interest me
if the story you are telling me
is true.
I want to know if you can
disappoint another
to be true to yourself.
If you can bear
the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.

I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.

I want to know
if you can live with failure
yours and mine
and still stand at the edge of the lake
and shout to the silver of the full moon,
“Yes.”

It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away.

I want to know
if you can be alone
with yourself
and if you truly like
the company you keep
in the empty moments.

To read more from Oriah: http://www.oriahmountaindreamer.com/ and there is also facebook.com/oriah.mountain.dreamer.

The Warrior Project

Autism can seem like a far-away idea. Something that happens to other people’s children. But, with 1 in 88 children in Canada diagnosed with Autism, suddenly “other” becomes “cousin”, “daughter”, “neighbour”, “friend”. 

You know I’ve been motivated to launch a series of campaigns and programs to address the issues with the current medical and governmental lacks in the world of Autism (ASD) and Neurological Disorders.

When I heard about the Aviva Community Foundation’s contest, I had to submit a project. Winning means I can launch initiatives with speed and efficiency! Here’s the entry. Please, have a look and VOTE. Link below.

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Approximately 30,000 pre-school aged children in Canada have an Autism Spectrum Disorder (ASD).  That’s more than the prevalence rates of pediatric diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome COMBINED.

The inspiration for The Warrior Project comes from a problem with two parts:

The First: The wait lists for diagnosing Autism currently run between 12-24 months, a terribly debilitating period of time given early diagnosis and intervention is key with Neurological Disorders. When discovered early (as young as 18 months of age, though most commonly between age 2-3),  the opportunities for children with ASD to improve are exponentially higher, seeing children move towards the higher functioning end of the spectrum. Private assessments cost between $2,200-$3,000 making them prohibitive for many families across Canada. But what this means is that for parents who aren’t able to cover the cost of a private assessment, their child’s best chance to advance (between age 2 and 5) is shrunk by the wait lists.

This introduces Part 2 of the problem: In Quebec and Ontario, a diagnosis means children are now eligible to wait for services, not actually receive them. Wait times are between ONE to TWO years, and – horrifically – sometimes longer.

What does this mean? That a child who is 2 1/2 yrs old when their parent suspects there may be something wrong, will be older than the window for Early Intervention, and in Quebec, too old to receive public services which only support families until the child is 6 years old.  They will have missed the window in which the brain is most plastic and able to develop, and they will have missed the short period of time allotted to receiving government funded services.

Okay, so why not pay for the assessment and the services privately?

Great question. Happen to have $40,000-$120,000 in pocket change? Perhaps in the couch cushions? This is the cost EACH YEAR parents pay for the programs to give children a chance to uncover their potential, gain connection, and cultivate life skills that will allow them to lead a full-filling life.

Our Solution:  The Warrior Project. A three-part action plan to raise awareness, slash wait times and fund families.

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Cast your vote, here: http://www.avivacommunityfund.org/ideas/acf19113

Winning funds will launch:

A) Nation-wide Advocacy and Awareness campaigns run in public schools and private institutions and will develop into conferences. Called “Sparx”, these events address bullying, fund-raise and give a voice to children with differences in integrated classrooms.  Each year, the program theme changes and gives students an opportunity to use creative/artistic skills to showcase how their voice is as unique as that of a child with Neurological disorders.

The events facilitate life-changing awareness that can break cycles of depression, anxiety and marginality, and positively impact esteem. For siblings of children with disorders, the events foster a sense of community acceptance. For the child with Autism, their voice gets a positive platform, and for those who think they are untouched by Autism it is an opportunity to see that their classmates aren’t odd, or scary, or distant.
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Supported by high school student volunteers, the events showcase how connected we are to each other, and how important it is that communities act to advance the well-being of all our members. The project encourages the development of socially minded personal initiative, and leverages positive peer role-modeling.

B) Assessment-a-Thon events across Eastern Canada bring professionals to children in an unprecedented move towards early diagnosis and intervention, this part of the project targets the outrageous wait times for a diagnosis.  Partnering with leading doctors, therapists, and professionals and using professionally designed, best-in-class protocols, we will deploy a series of assessment caravans and venues to reduce the number of children on public wait-lists to eliminate socio-economic disparity for hundreds, if not thousands of children and youth.

[Like what you’re reading? Please contribute your vote, http://www.avivacommunityfund.org/ideas/acf19113%5D

Community Impact: Existing foundations and charities in this area fund important research. They do that well. We do this well, we work from our strengths and we want to give children with Neurological Disorders a chance to do the same.  Early Intervention increases the chance for kids to become contributing, fulfilled members of our communities. Fundraising provides much needed support to parents and raises the character and caliber of communities across our great country.
 
Sustainability: Each event, each campaign is run as an independent project, allowing us to fulfill our goals of advocacy, detection, and funding without long-running projects. Our approach gives us flexibility and relevancy each and every time we act.  With your help, your funds, we can widen the window for hundreds of children; broaden the minds of thousands, and help them find the warriors within.

The Warrior Project was created by the Red Boot Warrior. A young mom of three daughters, the youngest of whom is 2.5 and on the spectrum, who found a warrior within and a muse to channel her expertise.

Thank you for considering our idea; your support allows us to launch this initiative with speed and efficiency. Please vote for The Warrior Project today.

HOW TO VOTE: http://www.avivacommunityfund.org/ideas/acf19113

LIKE FACEBOOK.COM/REDBOOTWARRIOR

It’s a tween thing

So.

In a personally profound declaration of love and adoration for my eldest daughter, Noosh, I reached my hand back to touch her fingertips and glance at her at a red light while driving home from gynmastics.

Enter stage front seat:

mother I like you, Noosh. I like you and love you and think you’re absolutely wonderful.

daughter I hope I find my pants.

:l

Good lord, not even a smile or glance my way!

At dinner tonight when I recounted the story, she giggled nervously.  She’d been so absorbed in her own thoughts she hadn’t even registered what I’d said!

Just how young does the “tween” range begin??

A.

Shit. Oops, Sorry! Merde.

Not long ago I received an hefty envelope from our local provincial medical centre, the place where our daughter Téa’s case will be managed.
In it was an intake questionnaire in French with a post-it note apology from the social worker, saying she had run out of the English version.  I don’t read/understand French with the same fluency as English and I live in a largely English-speaking area on the west island of Montreal.

The questionnaire is intended to capture information about Téa’s birth and developmental history and serves as the starting point for service acquisition in the public sector.

As you can imagine, its pretty vital that I understand what I am being asked.  Though my husband was educated in English and French, I am the one who is the primary care giver to our daughter and the only one who can answer any and all questions related to Téa’s birth, infancy, history,  progress and interventions we have already put in place for her.

This means that even with him by my side translating the questions and then translating my answers, MOST of the nuance and context going both ways, that is: what I am understanding from my husband about the question and what he is understanding from me and then translating – are LOST.

Most of us – even though we speak French – when dealing with matters as important and delicate as these prefer and often need our native language; and while that may introduce the argument of whether a version of each form needs to be made available in everyone’s native tongue, no (but would’ it be great if it could be??), we’re in Canada and an English form should be available in largely English speaking areas – even in Quebec.  If banks translate their automated tellers into mandarin in areas where their client demographic is Asian, then surely agencies created to service we the citizens can stock enough bi-lingual forms that I don’t get a French one with an “Ooops, sorry!”.

This got me thinking about a recent post in Huff Post from a fellow-Quebec mom with an Autistic child who asked whether she ought to leave the province given that her son didn’t – and likely wouldn’t ever – speak French. Linda poses a what I see as a very complex challenge: should her son leave Quebec.

We suffer the worst access and wait lists in the country. Her son is now 14…my daughter is 2 and a half. And I’m thinking of leaving. We have family in Ontario, just as we have family here. We’re lucky that we have the love and support of everyone everywhere. But for families without relatives in other cities (ideally BC or Calgary if your child has Autism), do you stay or do you go?

What would you do?

Calgary gives parents $40k/yr with a valid diagnosis (then it drops after age 6, I don’t recall by how much). In BC you get $22k/yr towards services from approved practitioners. You’d think we’d all have moved by now. But we don’t, for the same reasons that Lisa points out: we work hard to create a life, and work, and connections where we are. And there is much to love about Montreal, about Quebec.

And yet.

I am an Argentinian Jew who grew up in Toronto and chose to move to Montreal to follow the love of my life. How many strikes until you’re out in the game of the proposed new charter? Already I feel like a second class citizen whenever I speak English in public. Now, as a family with a child with special needs, I am further marginalized and so is she.

At our house, there are three languages with English being the dominant one you’ll hear with an ever-increasing smattering of French now that two of our girls are in Elementary school and flourish of Spanish.  If we go to Toronto, our girls will be enrolled in French immersion programs.
And yet.

This shouldn’t be a question of whether to stay or go. There shouldn’t be an absence of English forms. There shouldn’t be a disparity between English and French services…both of which fall grossly below the minimum necessary for our children.  There shouldn’t be a chasm so large that whole families fall into abuse, poverty, and depression between what is publicly provided for and privately available.

And yet, here we are.  Merde.

A. Warrior.

Is your kid severly enough impaired? Strangely, you might hope so.

There are quite a few tasks that become neglected when you set course in the brave new world of special needs. Among them, is mail reading.

TAX SUBSIDY COMIC copy

Learning that your child has a developmental disability, in our case, possibly Autism and certainly some form of cognitive developmental delay is akin to being launched willy-nilly into a brave new world where you don’t know a thing or a soul and haven’t a clue as to what comes next.

You’ll be interested to know that in this brave new world, regular stuff, like mail remains a tedious task. Ah, normalcy.

This evening I took on the seemingly benign challenge of getting through the correspondence that’s been screaming for my attention from my desk. It proved, in fact, not so simple task but a foray into the very fires of that brave new world.

At our house, I’m interested in everyone else’s mail but my own; and with all our daughters aged 7 and younger, that leaves me with only my husband’s mail as a diversion.  In our 11 years together, I have taken the initiative to get the mail 3 times, so the task of retrieving it from the mailbox at the end of the street has fallen to him.  My task is to look at it, experience panic, and place it atop the artfully constructed paper pile that I imagine myself wrestling into control.  Someday, after an Ativan.

This evening, I resolved to address as much of the pile as I could gather in one hand.  This was the bounty: a letter confirming Téa’s RESP, a letter from our health insurance confirming that we still have coverage,  a pre-approved loan application for $15,000 at the humble rate of extortion,  and a hefty envelope from the CLSC (local medical/social services clinic in Quebec) where Téa’s public medical/social needs will be “managed” [scoff, snigger, shaking of the head].

In it was an intake questionnaire in French with a post-it note apology from the social worker, saying she had run out of the English version.   Let’s pause for a moment to consider that I don’t read/understand French with the same fluency as English and that I live in a largely English-speaking area west of Montreal.

Ask me how many of these I have already filled in. SEVEN.

How many more of these am I going to have to fill out?

I have copies of many of them and it occurred to me that creating one Master summary and adding to it each new development/assessment/milestone reached would be an efficient way to keep a record of everything that takes place in and around Téa’s developmental journey.

It also occurred to me that we parents need a centralized online portal that all agencies can access and parents can give authority to access. In my ideallic imagination there lives a portal with secure access for each practitioner I connect with on my daughters behalf including digital copies of all assessments, interventions, updates, reports, and pending needs assessments or appointments. *

Along with 8 back-to-back pages to fill in and return, out slid forms for the Provincial Handicapped Tax Subsidy.   With faked calm I opened the envelope.  Scanning the instructions for answers to:  did I have to use blue pen or black?  Did they want all cap’s? Which professional was considered professional enough to complete the professional copies of the form?  Did I need to sign in blood and tears or was a handwritten signature enough?

And as I scanned, a conveyor-belt of questions strolled through my brain:  is my daughter handicapped enough to qualify for the assistance we need?  She has an as yet undiagnosed variation of a gene that seems to be the cause of the impediments in her development, and she has been assessed as being on the Autism Spectrum – possibly as a result of the unnamed genetic variation.

Maybe it’s a personal fear of rejection, but really, how sick – how  delayed – how impaired – does she need to be for our family to qualify?  The expenses to get her the best care we can get are very large and VERY necessary.  Would this be understood by the faceless person considering our request as being very legitimate too?

As a rule, your impairment is considered severe and prolonged if it meets both the following conditions:

  • It has lasted (or is expected to last) for at least 12 consecutive months.
  • It has significantly limited your ability to perform a basic activity of daily living (seeing, speaking, hearing, walking, eliminating, feeding or dressing yourself, or functioning in everyday life because you do not have the necessary mental or physical functions).

As I took a pen to begin to fill in her name my breath wrangled itself, tortured, from my nearly fully compressed lips and as my hand moved to place the tip of the pen to paper I hit a wall of emotion and sorrow and disbelief so profound that I could not write her name.

Believe me, If I didn’t need a tax credit I would not apply. But  little as it is, every cent counts when the costs of caring well for a child with Autism are in the $50-80,000 a year range.

I wouldn’t fill in her name.  Call it what you will – a wholly unrealistic assessment of the situation…optimism…fear…maybe it’s all of that and more.  The truth is, I couldn’t write her name because doing so makes it so; makes it real in a way I refuse to accept.

My daughter is not handicapped.   How can she be?  How can this be?  Plus, my daughter is not handicapped.  From the bottom of my believing and possibly naive heart I feel that she is not handicapped.

And yet, she is.  Because she “is” a way makes her have to work harder to get what other kids get with relative ease. This vibrant, intelligent, problem-solving, skill-acquiring little girl who has the best attitude and joy-inducing smile on earth is handicapped like the golfer; and the Provincial Tax Subsidy goes (a little) way to helping us cover the interventions and therapies and specialists who help her correct and adjust and develop so that her score – like that of the golfer – improves and she can enjoy the game of life with more ease and pleasure.

That night, I stepped into a brave new world that probably sent my mail-opening motivation waaaaay back.

I’ve written before about discovering the Warrior in me that steps up in times of adversity. In such moments, my inner-warrior takes a look at what’s happening inside my heart and my head and says, alright, hon, step aside I’ve got this. And I let her.

Today, it seems – without letting me know – my warrior took the day off. Today I am just, mom. With all the strength and all the love and the fear that being mom involves.  My warrior doesn’t have aspirations for my children, she has mental muscle and a fucking indefatigable energy to fight and win.

I, as mom, have many definitions and aspirations for my girls. Handicapped isn’t one of them; and in those moments when I am more mom than warrior, and have to consider that there are different possibilities for my girls than I ever had to acknowledge…well…in some of those moments I crumble in the face of what needs to be done and let the warrior take over.

And guess what? Little by little I see that there is a blending of mom and warrior and we are fusing with each challenge, each possibility, each milestone that comes.

A. Warrior

*I’d like to build one. Who’s in?  If you want to help out by participating in the design, architecture, coding, and conception REACH out to me. This would be a parent-driven initiative, not a government/hospital one.

Parent’s are said to be the very best advocates for our children and I for one whole-heartedly believe it.  You want to know about my child? You need to know about her history? I will grant you temporary access and you can get it. All results will be compiled there. I am in charge. I lead the charge. And so do all other parents who like me, have found their inner Warrior.

Perhaps it exists and I don’t know of it yet. If you do, for goodness’ sake, tell me! I’ll tell every other parent/guardian in this mess of a system.

The Foundation

The foundation of all things seems to be rather important.

I dismissed this when I was  younger as unnecessarily time consuming. Now I see the significance of good foundation garments to suck in my stomach and lift my ass…help my thighs not go raw as they rub, rub, rub together beneath summer dresses.

I see it too in how my daughters engage the world; connecting with people and making choices: our raising them with confidence and esteem and a belief in their abilities to think and feel their way through anything – be it a playground spider or feisty friendships.

It’s evident in Tea as she learns to crawl and knee stand and I learn just how important it is that she crawl this way, not that way, and hold her knee stand for a count of 3. Because these important basics are the foundation of successful walking, running and jumping.

All of us use foundations, those intentionally formed and meant to aid us as we move through life and, hopefully, progress, and the ones unintentionally created when we weren’t looking or paying attention to how things in our lives were taking shape. All of them, intentional or not, affect the course and outcome that we build from that these initial foundations.

In my life now, with the murkiness of a genetic disorder nearly settled and a sense that our Tea lives somewhere along the Autism Spectrum, I have decided to turn my considerable love and passion and fiestiness toward getting money in the hands of parents for assessing and funding their children with Neurological Disorders.

Today, I took the first step in building The Foundation. So named because I can’t close in on a name and that should be no reason to wait to get started.

Today I called my accountant, David Epstein of Kader Epstein and took the fist step toward identifying what it is that I don’t know about starting a foundation.  I believe that in order to get to where you want to go, you have to take a moment to unearth whether there are things about what you want to do that you don’t know yet you don’t know. For instance. I didn’t know that The Foundation can be set up Federally and doesn’t have to necessarily be set up Provincially as well. But see, this is just the tip of the iceberg. Having never set up a foundation before, all I know is what I know I know. I can’t even fathom many of the things I will learn and come to know.

So here we are, on day ONE. The day when I acknowledge there is more that I don’t know than that I do know, and were I sit happily knowing that I’ll only get smarter about this from here on.

Today, I begin the task of  assembling a TRIBE OF ADVISORS. People who know things I do know know, people I do not yet know, and how to do things I can never hope to know but can engage them in doing on my behalf.

Because you know what I DO know? It’s this: I was brought up with an exceptional foundation and believe that as a nation we can mobilize funds into the hands of families to change their children’s lives.

Have advice? Consider it solicited.

And to Nat, my sister in law who said just do and the rest will follow, here we GO baby! I love you.

A.

Carry On, Warrior

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I read in Carry On, Warrior that everyone is doing their best. And I try to remember that; often I succeed and it tempers the judgements and foul-thoughts directed at people who truly challenge the belief that “everyone is doing their best”.

 

My daughter is doing her best. She rocks it actually. She’s incredible and smart and vibrant and she will change the world.

 

I don’t always do my best. Sometimes I need to hide behind the pretense of alright-ness. Sometimes I need to eat my way through the day so that I am too busy with making meals and eating them to actually deal with pressing needs critical to my daughter’s well-being.

 

Sometimes, facing it makes me so weak I can’t hold up the phone; can’t open my mouth to speak.

 

Fortunately, most of the time, I am a warrior. I put my red boots on and let them do the walking because I know, God help me, I know I can’t walk on my own. Somehow these boots are magical….I wore them during labour and provided a comical delight to the nurses working the night shift on that blessed night that my daughter was born.

 

Today, I don’t even want to put the boots on. Because they make me do things and I don’t want to do things that force me to admit that more needs to be done.

 

So I came here to own these feelings because I know that owning them heals them; and strengthens me.  I hope that if you too, like me, need boots sometimes, you will find them.

A.