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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Cake-Walk to being social with your a-typical kid.

The 2014  kick-off post for RedBootWarrior’s facebook page was a link to an article narrating what it feels like to be the parent of a child on the Autism Spectrum. I shared it because  I have advocacy & awareness raising on the brain for this year, and sharing an inside view at what life is like for your fellow parent-peers whose children happen to have a special need seemed an excellent way to begin.

Your comments and empathy when we bump into each was a nod to that decision.  That article inspired THIS  post, and why it did so is as important as the fact that it did.

When Téa was diagnosed, I didn’t hear from people I had always been certain would rally around me.  That feeling reeled my already gutted soul.

The diagnosis brought with it many struggles and many graces and among the myriad of adjectives it brought, it also teased out one of the missions I’ve written out for RedBootWarrior: building parent’s “mental muscle” and helping them find their Warrior within.

So let’s begin with this and let me be clear: this post isn’t about you and how hard it is when others don’t make it better for you.  It’s about everyone else and how it’s your responsibility to help them be who you need them to be.  This is meant to aid you in navigating situations that you may feel uncertain or concerned about and inspire ideas that apply to you.

FIRST, THREE KEY INSIGHTS.

1. Labels mean little to little kids, they mean little to adults, too, for that matter.  Think people who know me are any further ahead in understanding how to be around me just we had a label for Téa “Autistic” which then turned into “Rett Syndrome”?  From what I’ve seen, nope. Not even a little bit. Not unless they have a personal or professional history to give them direction.  So, we broach this like we do everything else for kids: simple, clear, short sound bites that clue them into what is okay or not okay.

2. More often than not, people will really, really want to stare and in their efforts not to will end up making you feel uncomfortable and unintentionally make everyone feel awkward, or angry, or upset.

3.  The more ease and leadership you come with to social situations or public places, the easier it become for you because others are not left wondering what to do. They will take your cue.

To be simple, clear, and short: labels are meaningless, people need to stare and you need to be the boss.

Becoming the boss and feeling at ease takes mental muscle. You won’t have it all at once, but believe me, it’s easier than plank.  And what little you may think you have to work with is, in fact, plenty to begin with. You’ve made it this far, you’ve survived the diagnosis or the realization or the surprise at birth.

There really is no end to what you can do.

Let’s traipse through a scenario to highlight options for how to help all of us be out-and-about together.  My lovely Téa will be our role-player for all scenarios.  As you read,  daydream about what you would say about what you’re dealing with.

THE SCENARIO:

You’re at a gathering with people who know there is something different about your child but don’t know what and are sensitive enough to what to know and polite enough not to ask.

ADDRESSING THE GROWN-UP.

Option A: “My daughter has Autism. She is very comfortable with strangers and loves to explore, especially anything with buttons and sound. She may or may not make eye contact with you but she loves it when people talk to her and even though she isn’t speaking yet, she responds to clear instructions like, “come here, please”, “hold this”, “wait, please”.  Please interact with her as you would any other child.”

This is what I say, really. For now, we have it pretty good.  Not everyone has this experience, though. For those of us, parents whose children are not at ease in social contexts, or who struggle with sensory integration challenges, or whose manifestations of “special” are very notable and eye-catching what I’ve just described is absurd.

So let’s make it less so. Not by hiding in our homes, but by easing how people can interact with it all.  Afterall, if we’re in our homes because we don’t feel safe or at ease in public, how are we to expect the public to feel at ease when we do go on about our lives out loud?

Option B: “My daughter Téa has to work very hard to be feel okay in public/groups. Loud noises physically hurt her and sometimes her excitement needs an outlet that might look scary to you but isn’t hurting her.  Please interact with her as you would with any other child, she may not respond but it will mean the world to her and to me. Oh, and, the room down the hall would be a great place for her to sooth herself.  May we use it if we need to?”

These are the tips for addressing adults:

1. Use simple words to describe what you or your child experience.

2. Tell the other person do to help.  Let them know. Believe me, just about everyone will be eager to understand and step-up. If you happen to meet an asshole, send them my way.

3. Invite Questions. While this may be hard at first, it is an important way to a) help your child feel at ease and accepting of themselves, b) ease you and others, and as fellow Warrior Beth Lakoff shares, “It has opened up some amazing dialogue and dispelled a lot of myths surrounding his [son’s] disability. Sometimes, the questions are tough of make me sad to answer, but I think it is so valuable that I “flex my mental muscle” and answer anyway!”

ADDRESSING THE KIDS

We had a great experience this past weekend when a little boy repeated pushed Téa.  At a gathering for a friend at the home of one of their friends; someone I hadn’t met before and in a house we hadn’t been to,  Téa, who loves all things with buttons was drawn to a beautiful festive wall plug. The first thing she did when we arrived was wiggle her hand out of mine and walk right up to it. With poor gross and fine motor skills, her interest and delight meant she swatted it.  Seeing this, the son of the acquaintance came and slapped her hand away. Then he pushed her. When she went back (never looking at him), she got pushed again. And then a third time.

Wondering where the hell I was while my 2.5 yr old Autistic daughter was being pushed?

Observing, from a few feet away. The first thing I did was look at the face of this little boy. I was looking to see if there was malice in his expression.  Had there been, I would have scooped Téa up and kept them apart from the very first encounter.  What I saw were surprise and questioning, and what I understood is that he couldn’t understand why this little girl was trying to smash things in his house.

Here are the three tips for addressing kids:

1. Observe the intention of the interaction.  Is the child who is interacting with yours rude/mean/insensitive or are they confused or unclear about how to handle themselves or the situation?

2. Be swift. Once you’ve identified the intention be quick about intervening and be clear. For me, it looked like this: “NO. You may not hit her.” I didn’t approach them because Téa was just fine and smiling contentedly. Then, with the push, I came to Téa’s side, placed my hands on her sides and said “Pushing is not okay either.  My daughter is learning to be gentle. You may use words to remind her or you may call me for help.” I thought that would be the end of it. When it happened again and was accompanied by a change in the boys expression and near tears on his part, I thought he must have been feeling confused. This is when I got lower on my knees slipped between him and Téa, and gave him ideas, “Téa is slowly learning to be gentle. You can help her with that by gently moving her hand. Or you can come to me and I will make sure she doesn’t touch it. It is a very special plug. We don’t want it to be ruined.”

With that, I guided Téa towards another area. It just so happened that a beautiful Christmas tree and a laptop playing music were in the next area.  If Téa could run,  this would have been it – she made a bee-line for the laptop. I beat her to it and re-directed her, giving the little boy a chance to get between Téa and the laptop. As I moved away, I saw him gently placing his hand between Téa and the laptop. No pushing. No smacking. He was awesome. I HEAPED on the praise.

3. Praise with honesty and clarity. Repeat the praise often to the child and say it aloud to other adults around, especially their parents within earshot of the child. In this case, it sounded like this, “That was so gentle! So good, thank you!” and soon after, “I see you are really helping Téa be gentle. I appreciate your help.” And I MEANT it!

In all, it took 3 minutes to gain an ally in keeping Téa safe and not destroying this warm family’s home. His parents were eager to find ways to make us feel at home and I was at ease and hoped to make them feel so too.

Being alright when you’re out with a kid with special needs isn’t about what the other person is doing for you. And it shouldn’t be about doing what this guy is doing, and trying to fade into the wall.

It’s about being real. About how we are being in public and how we have a chance to help others be at ease and help us stay at ease.   Fact is, we have something we need from others.

And the only way for all of us, really ALL of us, to get this right for each other, I think begins with us parents of kids with special needs. Is it too much to ask? Is it unfair or exhausting? Yep.  That’s why we need to build our mental muscle.

See you out there.

A.

P.S. This post will be broadened and deepened and serve as a downloadable guide. I’m looking for contributors to share insights and ideas and to appear as co-creators of the guide. Post ideas in the comments and they will be added with credit to the guide, email me directly if you have more to share than fits in a comment. An again, a very special thank you to Elizabeth Lakoff for contributing.

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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