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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Holding still is action too.

If you’re any good at yoga you’re likely better at holding still than most of us, certainly better than me. I’m usually uncomfortable being still – not as much physically but mentally.  Ideas are always bubbling up; task lists the elliptical of my life.

Apart from the realities of my life (three children with my husband one of whom has complex medical and developmental needs, running a business and working with my spouse), my personality is one of never being still and that includes my patience.

Part of my life involves working with parents and groups who face situations that require them to develop resilience, a well-won patina that pays tribute to the life they live. Often, during these workshops when we have our open discussion portion the topic of spouses/partners come up.

When it comes to relationships, marriage in particular but also siblings, friendships, parents or extended family, many of us tend to want to turn and run in the face of anger, disappointment, hurt feelings, or sorrow.  Certainly, this is true for me…my feelings so powerful that the idea of continuing feels like a physical burden I just want to drop-kick and step away from.

And yet, it’s discovering that holding still when I want to leap away or abandon ship is sometimes the most important action one can take and a helpful one when we struggle to make a decision about what to do or what direction to go in.

My husband and I have been together for 16 yrs. A lot to some and nothing to others except that given that we the three kids, live the special needs life, and work together 24/7 means our 16 years are experientially more like 16 to the nth degree.  This means a few things: I do actually know what I’m talking about when it comes to significant relationships, I understand the rigors of raising multiple children, and lastly, I am well versed in the break-down-pick-my-self-up again cyclone of resilience building.

Having successfully triangulated the most stressful factors in any marriage, know that when a person who isn`t good at holding still in any respect tells you that doing so is the most important action you can take sometimes, the reason is solid:  there are times when not making a decision is the decision.

Why might this be? Here are a few reasons:

  1.  It takes the pressure of making the ¨right” decision off our shoulders at a time when we likely need the break most.
  2. It creates the space for things to shift – be they our feelings or circumstances – so we can better understand them or reflect on them.
  3. It lets us see the difference between a moment of emotion (anger, hurt, disappointment, betrayal) and an on-going issue that needs resolution or termination.

Holding still is not ignoring or turning a blind eye, and it certainly doesn`t indicate acceptance of a situation or conversation. It means that you are managing to regulate your reaction to something difficult and give yourself the space you need to decide what to do.

Holding still can be a very active thing to do, actually. Because jumping to act is often a reaction rather than a decision and those can often implode things you wish were still together.

And it doesn’t require the skill or practice of a yogi or a monk to do it.

What does it take?

Mostly, it takes telling yourself that you are making the decision to hold still. Then, it’s about observing how your thinking and feelings about the person or situation change with even a little bit of time.  Maybe for you it can include making lists or writing a letter that you will not send.  I’m not the expert on what the decision might look like after you’ve held still for a bit to give yourself the time you need, but I do know that holding still is as active a thing to do as rushing to action.

A.

 

OPEN HOUSE INVITATION FOR MY FAVOURITE PLACE FOR AUTISTIC KIDS IN MONTREAL.

I’ve been enjoying being blunt.

Téa’s diagnosis and the work involved in getting things in place sap me of energy and diplomacy. If you’ve got children with exceptionalities, you know what I’m talking about.

Here is your blunt for today; it comes with a tacit acceptance on your part that in reading this far, yep, this far, you must share this info because there is someone you know who’s recently received a diagnosis of Autism for their child (and they may not have told you yet) and you can do them the biggest good by passing this along to your people.

If your kid is on the spectrum, go to the The Abili-T OPEN HOUSE. JUNE 25, 3-5 pm 5331 rue Ferrier, Montréal, M4P 1M1

By far, it is one of the (if not the) best centres for ABA instruction in Montreal.

If we’ve never met, you need to know that our 3 yr old is on the spectrum and has fairly significant developmental, gross/fine motor delays, and sensory integration issues.  Her challenges are many, and are rivaled only by her adorable-ness and ability to cast a love spell on everyone around her.

If you know me, and never really understand what I am talking about because I keep gushing about Ali, Richard, Dr. Garcin, Evie and Nathalie, satisfy your curiosity and visit – I know you know someone one the spectrum and a parent lost and wondering what to do with a fresh diagnosis, your visit could lead to you sharing about this fabulous place. They have only FIVE (5) spaces open for this September. If your daughter or son is on the spectrum, go to the The Abili-T OPEN HOUSE.

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This is not a paid endorsement. This is not a quid-pro-quo arrangement (damn-it).

Each day, I drive Téa from the West Island to ABILI-T because they are, in my very well informed opinion, the gold standard in therapy and support. Employing best practices across the entirety of their services – from whom they hire to how they train them – and a fabulous facility, this is the one place I will miss about Montreal. My pool too, but I’d give up the pool in exchange for more Abili-T.

This is me, doing a little something for you today by sharing the info about an open house to the most fabulous place on earth if your kid is on the spectrum.

>> On-site Psychologist, Speech Pathologist, Physiomotricienne.

>> The Best ABA therapists I have observed, ever.

>> Compete transparency, exceptional support for parents and a true “team” approach that ensures we parents are as much of the plan as we want to be (in my case, very much involved), or can be (in case you just can’t even manage to get your red boots on).

Big Plus, for September, they have succeeded in creating a Family Assistance Program that helps parents not go bankrupt while giving their child(ren) a chance to close the gaps.

If your child is on the spectrum, and are 6 yrs old or younger, go to the The Abili-T OPEN HOUSE. JUNE 25, 3-5 pm 5331 rue Ferrier, Montréal, M4P 1M1.

I’m speaking to you from my heart – when Téa started there it was the first time I felt that I wasn’t alone. It was the first time I felt I didn’t have to push to get the best, to be understood. I finally felt that I had connected to a team of truly loving and interested and invested people who saw the ability in my daughter and had the skill and experience to bring it out in the ways that are unique to her.

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That’s one of the fabulous Senior Therapists. Tamara.

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That’s Gaiid, she has been especially helpful for Téa because Téa has many, many, motor, mobility, and sensory issues. Trained in France, she is a cross between a Physiotherapist, OT, and modified Feldenkreist practitioner. That’s my definition.

Their’s where the two photo’s on the site, which is why I am using them – I plan to photograph each and every person there – they are part of our family and no matter where we are, they will always be part of Team Téa. Even when we are in Toronto.

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.