Shit. Oops, Sorry! Merde.

Not long ago I received a 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, it’s 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 caregiver 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 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 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 in 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 daughter’s 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.