A New Justice League.

Making my top 5 of the hardest things to deal with remains dealing with the folks who work for service agencies. Being patient, and “sliding” in rather than charging in are two skills I am not naturally blessed with. It’ll be a lifetime in the making before I manage either of these two abilities with any form of grace.

And yet, grace with the right amount of push is what you need to hone as a parent in the world of special needs services. It also happens to be what you need to hone as a human being looking to accomplish anything at all.

If we were talking about businesses, when there are options in the area for where our children can receive private services out of pocket then we could rage and shout and take our money elsewhere; it is after-all the market economy. However, in the public service sector which is supposed to deliver services to citizens who need it but is designed to fail and where, as it happens, most families find themselves, you need to be practically pathetically apologetic and overly thankful for each and every action.

I find that so tiring, so irritating and extremely annoying.

The well-raised, sympathetic, people-loving, people-pleasing part of me understands that more often than not, the women and men who work as service coordinators, intake workers, counsellors, case managers, and personal support workers have a genuine connection to the work they do and want only to improve the quality of life of the people who figure on their caseloads.

The mother in me, the one who discovered you can get over the fear of coming across as too aggressive and experiences Hulkian rage at the severity of dysfunction in the health system as it relates to children with special needs, will tell you that those of us who navigate the system for our children should be paid for all the coordinating, following up, consulting, tracking, pushing, and repeating, repeating, repeating that we will do well above and the beyond the “expected” parenting related work that is raising children.

So how, in the midst of the shit-storm that is a diagnosis and life with a child for whom you need to continuously arrange services, am I supposed to be able to speak sweetly when all I want to do is rip someone a new one for being another cog in the wheel rather than an ally our family can count on?

The answer is this: to the degree that you are able to remove the feelings you have about your child and life in general right now, do it. Speak as if you’re addressing a neutral object.

Sound crazy? It is. Near impossibly hard. But you’re a warrior….at the very least one in training, and you can handle this just like you are handling everything else.

What I wish social services employees understood is that it is very difficult for us parents to talk to them. We are at once at their mercy – needing their willingness to connect us and grant us the magic of services or shorter wait times; and equally needing to demonstrate that it is us who are the advocates, leads, and implementors of our children’s wellbeing.

It is me who knows my daughter better than anyone else. I see the nuances and I see the struggle. I see the hint of understanding in her eyes when she holds my gaze that moment longer and not even if set on fire would I look away.

But here I am, at the mercy of the policy maker, the service gate-keeper who decides whether or not we will be granted a visit and when that visit will be. Waiting and hoping that they will decide that an assessment of the severity of my daughter’s condition makes more sense than telling me that she can’t be placed on a waitlist.

The ridiculousness of the situation we are in right now is that children with needs not labelled Autism don’t have a scoring system as a determinant for what the most impactful therapies are and there is no mechanism designed to ensure that available funds go to the children who need it. Is it possible for all children to get everything they need? No, that’s utopic. And not because the money isn’t there, but because of how the system is set up; how governments taking turns playing house think the votes will swing.

Funding allocation for the special needs community inclusive of the needs of children, youth and adults needs to be wrestled out of the hands of any government and stand alone as an aspect of our Charter of Rights and Freedoms. A party-free committee comprised of equal representation of vetted and well-reputed professionals and parents not vying for funds for their child’s diagnosis as if we are on separate teams, but as invested individuals in the well-being of our societies bravest – and equally – most vulnerable. We could call it The Justice League…with permissions of course.

The hoop-jumping parents are required to do when we do so very much already; and experience more stress, strain, and struggle than most people will bear over a lifetime invariably end with “I know of a really good [fill in the blank], but it’s private.

A bad mood will spread over you and at first, you’ll just have a furrowed brow and then your blood begins to boil and finally you sprew “ What is this bullshit! These services should be provided for! We live in CANADA, one of the very best places in the world to live. I am at once proud to be a Canadian and hollowed out that my country doesn’t give a damn about my daughter.

This is a quality of life issue, damn it! Families can’t crawl out from under the burden of properly supporting their special needs children. For a long time, I believed that it is my task and my task alone to care for Téa; our job to pay for everything. Somehow, I started looking at anything the government did to cover a cost or therapy as a BIG GIFT from above.

Nonsense. It’s all nonsense.

If society pays for the medical care of a sick child, it must cover the therapeutic care of a child with a life-altering condition.

If you’ve made it to this line, I want to thank you for reading with your eyes and listening with your heart.

Ariana

 

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Campaign for the death of “mompreneur”

Bet you’ve never met a Dadpreneur.  Nor a Papapreneur.

Seems this classification of people doesn’t transcend gender-typing.

Entrepreneurial men who have children are entrepreneurs.

Entrepreneurial women who have children are mompreneurs.

Wait, what? Once more…Entrepreneurial men who have children are entrepreneurs.  Entrepreneurial women who have children are mompreneurs.

Is there a reason for this? Yes. I’ll tell you what it is during my preceding rant.

Do women refer to themselves as the “m” word because they can’t decide whether they are a mom or an entrepreneurial person?  Is this their way of saying “don’t expect too much from me, heehee, I’m just a mommy playing at having a business”?

The word offends me; riles me up and fires me up because what you are saying to all of is that you can’t own that you aspire to more than motherhood; like it’s a shameful act to want to be a mother and a career woman too.

Someone who thought they were clever coined the term mompreneur has done a huge disservice to women.  Auto-correct on WordPress doesn’t even recognize the term, why should we?

Let’s be clear and start with likely the most important point to be made here: You don’t chose to be a full-time mom versus a working mom – we are ALL full-time moms. Some of us work at a job because we want to or need to or both. Some of us work as volunteers at schools, organizations, or sports teams because we want to and have the time to.

Some of us are even crazy enough to do both: be a full-time mom who has a business who volunteers at her kids’ school or run hugely successful social moms groups (thank you very much).

So let’s cut the crap: if you’re a woman who is a mom who also has a business, you are an Entrepreneur.

You are dismissing yourself and setting a hugely detrimental precedent by continuing to refer to yourself as the word I even hate to type.

Women who refer to themselves as momprenerus are not being enough of either, not the least of reasons why being that they don’t have the balls to stop being cutesy and actually get shit done.  To the rest of us, it signals that you are apologetic, uncommitted, and insecure. It means you are either not satisfied with your role as a mom and have an idea and a desire to add to it, or that you have an idea for a business or a product but you yourself don’t buy into its success.

So which is it?  All of us have felt like the Not-Good-Enough mother. All of us have felt that if only we could have more hours to work, or a clearer head to work we could really show the world what we’re made of, or advance a project that is dear to us or that could potentially change lives – if only our own.

Do Lawyers become Mowyers? Teachers Momeachers? Analysts Momalysts? What would it say to you about their skill, ability, commitment? Would you hire a Mowyer to represent you in court or oversee an important contract transacted or you would hire a Lawyer?

More on this.  The thoughts are ricocheting around in my brain much faster than I can type or make order of them…..

….we’re coming back to this one ladies.

Mommy-ness vs. Woman-ness.

I think I completely underestimated the possible occurrence that these two most female descriptors could compete with one another, or even cancel one another out.

I had fantasies of mommy-hood: I was going to be hip, fresh, manicured and on top of having every hair in place and being myself I was going to be fun, warm and tremendously entertaining to my daughter. I thought that I would be ME and MOMMY as well. But I learned they don’t go hand in hand with the ease I thought would be natural.

Now, with Naya a fantastically funny little girl of almost two yrs, and belly-baby due in a about 10 days, I’ve begun to reconsider a thought I buried when I started the Wee Wiggles Social Group. Where does Ariana go when Mommy-ana shows up to nurse, change diapers and sooth in the middle of the night?

I sat on the floor of our living room when Naya was 6 months old crying out loud that because I wasn’t a “somebody” (read: a titled professional) that I was a “no body”. I was tortured by the notion that I was not earning an income and therefore felt I had no tangible worth. I suffered with this notion for nearly a year with very short lived stints of reprise, and to be honest, when I found I was pregnant with belly-baby my mind turned once again to the idea that for as long as I was having children and raising them, I was going to be worth less.

We know, because we cling to the statistics that a woman who stays at home raising her children would be compensated a salary of $110,000 US. If you were to hire a housekeeper, a nanny, an educator, a cleaning lady, a lady of the night (what, we do that too!) it would surely cost more than that, would it not? So why is that even though I have my own bank account, a joint account, and my husband does well that I still feel the need for consensus to spend money that surely I have earned despite it not coming in the form of a company issued pay stub?

I know I’m not alone in this, I’ve spoken with several women – professional, intelligent, accomplished women who are home on maternity leave (in Canada we enjoy nearly one year of leave) or who’ve elected with their spouse to become SAHM – and we all feel the same. That unless we are earning, even if we have a joint account with our spouse there is a certain degree of indebtedness that we just can’t shake.

Do I do it to myself? Do imagine whispers of confirmation that unless I am out there earning I truly am less worthy? Or do I really hear them coming from the mouths of some people around me in veiled comments or facetious jokes? What about you – do you hear or do you imagine them?

There are a few things I wanted in my life that for me satiated my sense of accomplishment: I wanted an extraordinary marriage (check), I wanted children (elated check), and I wanted personal financial wealth independent of my spouse (—). Clearly I have a way to go before I can check that off my list; the question is, how far if I keep doing my female bit in our family equation? And at what cost?