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.

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The laugh that healed the day.

Today’s post is an excerpt from a random and typical conversation that occurred this afternoon between a man and his wife. Specifically, my husband and his wife.

“Did you just- poo?”

“Yes.”

“When?!”

“When I went to the bathroom a moment ago.”

“That fast?!” (really, he was incredulous)

“Yeah, I don’t sit and hang out. I go, I do and I carry on with my day. Frankly I have no idea what you do that you end up lost for hours in there.”

“Who cares what or how?!!  I don’t bother you about how long you take to do the things you do. Or why you repeatedly use my razors in the shower and then not bother to rinse the hair down the drain. ”

Here is where I thought it would go the ol’  don’t use my razors or I end up slashing my face bit. Instead, he continued like this:

“This morning, I climbed into the tub to be greeted by little hairs stuck around the edges because the water pooled thanks to your hair clogging the drain and left the little hairs from whatever you shaved stuck to the sides of the tub as it s-l-o-w-l-y drained.

But I didn’t care. I was too tired. And when as I showered I found myself standing in ankle deep water, watching the hair come away from the tub and float about I didn’t care.

And when those little hairs that are not mine started getting stuck to my own ankles, I didn’t ask “how” or “why” I simply couldn’t care. I shook my head and carried on, so honey, don’t care why I take the time I do, just shake your head and carry on.”

And in the midst of my cackles of laughter I stood up and he stood up and as we hugged and laughed and laughed the way you can only do with someone you are truly intimate with, all because right with the world.

A.

A Valiant Valentine’s

I locked myself in the bathroom on Saturday. Not for long….but long enough to get my head back to together.

My all-knowing husband suggested that we spend a day together – alone: no kids, no responsibility. I was as thrilled and excited by the prospect of being alone as I was nauseated by the idea.

The idea was to drop the girls off at my mother-in-law’s and take off for a day at a Nordic spa. He told me about his idea 10 days in advance, which means that I enjoyed 10 days of stomach aches off-set by giddy elation.

Sidled right up to that angst was the cold, heart-gripping fear that I would have to shove my body into a bikini in the dead of winter when no part of my flesh has seen the light of day for months. Hair has been acting  as my body’s extra layer of protective warmth against Montreal’s winter months. Now, I’m bare as a skinned hare and as I leaned against the bathroom door to bar entry from a probing husband I contemplated when I had lost my mind that a date with a sexy, funny, fabulous man would have me cowering in the bathroom instead of thrilled that I had been asked out.

And as I stood there,  I decided that maybe I was crazy but I was definitely not stupid. I slipped on a two-piece, sucked in my stomach and turned to look at my profile. That would do….most of the time  I would be underwater or in the haze of a wet sauna anyway.

A.

Missing that oh so pregnant feeling?

Have you been cooing and awing at every baby you see and think back to the glow you had during your pregnancy? Are you wondering if it’s time to have another bundle of joy, drool, and spit up in your life? Eat three family-sized bags of Orville-Redenbocker butter popcorn in two hrs. Yes, 2.

It is remarkable how accurately this simulates a woman’s 5th month of pregnancy. You’ll break into a sweat and as your stomach churns to handling this mass of condensed saturated fat, it’ll feel as though a little elbow or foot was kicking you in the ribs.

I was sitting with some friends after shoving handful after handful into my mouth and actually had to stop and ask myself in that nano second that it takes to think anything – could I possibly be 5 months pregnant and not have known it???

In all fairness, it is possible. After all, Sienna is 7 1/2 months old and I haven’t had my period so I wouldn’t know it if I was. We’ve gone through so many stomach flues, colds, flues and just feeling wiped out this winter that a pregnancy could have gone completely unperceived.

I’ve been shoveling food – correction: crappy food – like a goose being fattened for Fois Gras.

Why? I dunno.

I always eat when I am stressed about a lot of things coming up at once. I become very preoccupied by the fear that I will forget something and so I eat. I’ve yet to understand the connection with stuffing my face and being more organized….but as I plan my week whilst typing with one hand (the other is the popcorn bowl) I find that I feel better.

Yeah, yeah.

A.