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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A Mini Sib-Kit For Helping Kids Understand Autisic Siblings.

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Téa’s eldest sister is a fireball. The kind of kid for whom you always need to be at your best and brightest because her questions, insights and observations rival those of thoughtful, intelligent people many times older than she is. She’s seven. So imagine.

When we opened up the conversation about Autism at our house I tried to edit all the worries, thoughts and perceptions I have and give the girls a clean, non-judgemental, totally PC, and simple description of the word and what it might mean for Téa.

I came up with: “Autism is a word that describes how a person’s brain works. Téa learns differently than you and your sister and so mom and dad are discovering how she learns so that we can help her learn just like we help you learn.”  Six months later,  during an interview with high school students doing a philanthropy project, Naya shared with them that she worries about her little sister because she is the only person she knows with Autism. And I suddenly saw alllllll the holes that my answer left behind.

I’ve been seeking accurate and age-appropriate ways to explain things better as the girls’ questions and concerns arise.  So to that aim, I asked the director and senior therapist at Téa’s school whether Naya could participate one morning, seeing first hand what Téa does in her “school” and meeting other kids on the spectrum. The answer was a resounding, positive, happy-to-have-it-happen: YES!!

This morning, as I drove Nay and tutu to the ABA centre she attends every morning I started to prime her.  I had visions of pointing and staring and inappropriate questions. And I was hoping to edit Naya, so to speak, so she would be her most composed, polite self.

“Naya, there are a couple of things I need you to keep in mind for this morning….”.

Naya: “Yes?”

Me: “…uh……hm……” This was me realizing that what I was about to say was less about her possibly “inappropriate” behaviour and more about my concerns over how the morning would play out.

“….just no pointing please.”

Nodding, Naya says, “o…kay…I can do that.”

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Right. End of that conversation. Why? Because if there was ever a time when a kid ought to be free to explore her doubts, questions and concerns it needs to be at a centre where they specialize in helping parents understand and helping kids close the gaps. Because they can do what I don’t yet know how to do as well as I’d like and that was the whole reason for her to attend anyway, right?

Because my own thoughts are jumbled;  I’m trying to give my daughter positive messages about difference, discrimination and empathy – keenly aware that what I say shapes what she understands and I am not sure how to tease this all out for myself. So I did what I have only recently learned to do: scale it back. Keep it simple and let things play out. That’s my moto…for today. It changes nearly daily.

So much about what our family is going through is far outside my control and experience.  There are moments when I feel a soul crushing weight, and I am too defeated to even attempt to wiggle out from under it.  What the heck do I know about coaching kids though this? Apart from a fairly keen sense of intuition (thank God!), I am witness to my every shortcoming in this area and so I’m looking around and asking around and spackling  together information and ideas into possible sound bites of reassurance that I can dole out like granddads’ do candy.

So, in keeping with keeping it simple and building my stash of sound bites, let me share a few links and tips I’ve found useful so far in helping our daughters (seven and five) navigate having a sibling with Autism:

1. TOOL KIT: Autism Speaks (both in Canada and the US) have a series of tool kits. This one is for siblings and is a workbook intended to be interactive for us and our kids. http://www.autismspeaks.ca/family-services/toolkits. You will find others on the site for teachers, family, etc.  A satisfactory beginning to uncover questions and worries and give first answers.

2. PERSPECTIVE: This video from a young teenage girl named Rosie is fabulous “mini film” and is her worlds. http://youtu.be/ejpWWP1HNGQ.  Excellent for giving us and our kids an idea of what it is like for some kids on the spectrum.

3. INFORMATION For moms and dads, friends and family, this post by Michelle Dawson is one of the best I’ve read so far. Not clinical and also not “dumbed down”. It’s a good foundation for understanding the sameness as much as the difference between the typical and atypical brain. http://autismcrisis.blogspot.ca/2006/10/whats-autism-anyway.html

Without a doubt, there are many more resources out there.  I invite everyone who is reading this to include useful/relevant links to resources, videos, posts that have helped you or that you have come across.  If you are a professional and would like to let parents know about your service, please send me an email and we’ll take it from there to get the word out in a non-solitious way. :)

I’ll let you all know how it went today….

A.