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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The Warrior Project

Autism can seem like a far-away idea. Something that happens to other people’s children. But, with 1 in 88 children in Canada diagnosed with Autism, suddenly “other” becomes “cousin”, “daughter”, “neighbour”, “friend”. 

You know I’ve been motivated to launch a series of campaigns and programs to address the issues with the current medical and governmental lacks in the world of Autism (ASD) and Neurological Disorders.

When I heard about the Aviva Community Foundation’s contest, I had to submit a project. Winning means I can launch initiatives with speed and efficiency! Here’s the entry. Please, have a look and VOTE. Link below.

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Approximately 30,000 pre-school aged children in Canada have an Autism Spectrum Disorder (ASD).  That’s more than the prevalence rates of pediatric diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome COMBINED.

The inspiration for The Warrior Project comes from a problem with two parts:

The First: The wait lists for diagnosing Autism currently run between 12-24 months, a terribly debilitating period of time given early diagnosis and intervention is key with Neurological Disorders. When discovered early (as young as 18 months of age, though most commonly between age 2-3),  the opportunities for children with ASD to improve are exponentially higher, seeing children move towards the higher functioning end of the spectrum. Private assessments cost between $2,200-$3,000 making them prohibitive for many families across Canada. But what this means is that for parents who aren’t able to cover the cost of a private assessment, their child’s best chance to advance (between age 2 and 5) is shrunk by the wait lists.

This introduces Part 2 of the problem: In Quebec and Ontario, a diagnosis means children are now eligible to wait for services, not actually receive them. Wait times are between ONE to TWO years, and – horrifically – sometimes longer.

What does this mean? That a child who is 2 1/2 yrs old when their parent suspects there may be something wrong, will be older than the window for Early Intervention, and in Quebec, too old to receive public services which only support families until the child is 6 years old.  They will have missed the window in which the brain is most plastic and able to develop, and they will have missed the short period of time allotted to receiving government funded services.

Okay, so why not pay for the assessment and the services privately?

Great question. Happen to have $40,000-$120,000 in pocket change? Perhaps in the couch cushions? This is the cost EACH YEAR parents pay for the programs to give children a chance to uncover their potential, gain connection, and cultivate life skills that will allow them to lead a full-filling life.

Our Solution:  The Warrior Project. A three-part action plan to raise awareness, slash wait times and fund families.

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Cast your vote, here: http://www.avivacommunityfund.org/ideas/acf19113

Winning funds will launch:

A) Nation-wide Advocacy and Awareness campaigns run in public schools and private institutions and will develop into conferences. Called “Sparx”, these events address bullying, fund-raise and give a voice to children with differences in integrated classrooms.  Each year, the program theme changes and gives students an opportunity to use creative/artistic skills to showcase how their voice is as unique as that of a child with Neurological disorders.

The events facilitate life-changing awareness that can break cycles of depression, anxiety and marginality, and positively impact esteem. For siblings of children with disorders, the events foster a sense of community acceptance. For the child with Autism, their voice gets a positive platform, and for those who think they are untouched by Autism it is an opportunity to see that their classmates aren’t odd, or scary, or distant.
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Supported by high school student volunteers, the events showcase how connected we are to each other, and how important it is that communities act to advance the well-being of all our members. The project encourages the development of socially minded personal initiative, and leverages positive peer role-modeling.

B) Assessment-a-Thon events across Eastern Canada bring professionals to children in an unprecedented move towards early diagnosis and intervention, this part of the project targets the outrageous wait times for a diagnosis.  Partnering with leading doctors, therapists, and professionals and using professionally designed, best-in-class protocols, we will deploy a series of assessment caravans and venues to reduce the number of children on public wait-lists to eliminate socio-economic disparity for hundreds, if not thousands of children and youth.

[Like what you’re reading? Please contribute your vote, http://www.avivacommunityfund.org/ideas/acf19113%5D

Community Impact: Existing foundations and charities in this area fund important research. They do that well. We do this well, we work from our strengths and we want to give children with Neurological Disorders a chance to do the same.  Early Intervention increases the chance for kids to become contributing, fulfilled members of our communities. Fundraising provides much needed support to parents and raises the character and caliber of communities across our great country.
 
Sustainability: Each event, each campaign is run as an independent project, allowing us to fulfill our goals of advocacy, detection, and funding without long-running projects. Our approach gives us flexibility and relevancy each and every time we act.  With your help, your funds, we can widen the window for hundreds of children; broaden the minds of thousands, and help them find the warriors within.

The Warrior Project was created by the Red Boot Warrior. A young mom of three daughters, the youngest of whom is 2.5 and on the spectrum, who found a warrior within and a muse to channel her expertise.

Thank you for considering our idea; your support allows us to launch this initiative with speed and efficiency. Please vote for The Warrior Project today.

HOW TO VOTE: http://www.avivacommunityfund.org/ideas/acf19113

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