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.
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.
*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.