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, counselors, 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 hulk-ian 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 inlcusive 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.

 

Weird is normal…and what’s normal anyway?

“Mom, you have two weird daughters.” Says Naya who is eight.

“Three, sweets, actually.”, I reply.

“Nah, Tutu’s not that weird yet.” Perhaps one of my favourite things she’s ever said.

People ask me how Tutu is doing all the time; a wonderful question that is nice to hear – normally. Each time, the question prompts me to think about whether I answer about Téa as a typical kid “she’s good! Happy, busy, funny as all get out” or whether to answer about Téa as a kid who faces innumerable challenges as a result of having Autism, “She’s good, working hard and we’re seeing progress.”

Speaking about her as the later hurts my heart.

It feels as though I am somehow speaking about the status of a project rather than my own daughter; as you can imagine, that’s a mighty odd way to feel when you’re talking about your kids.

Having given this a lot of thought, there are 3 ideas that struck me as particularly useful that hopefully will help you or other parents you know who find themselves at times caught in a weird place too.

1. Your child is a kid like all other kids.

They are not foreign, or alien, or different than you or their siblings. Their state of being (whether it’s a disorder, or disability, or delay) is a characteristic that will define them just as any other characteristic defines each of us. I am impatient, struggle with anxiety and am annoyingly bad at math. Maybe one of your children has ADD, or severe allergies, Dyslexia. Maybe they are missing a limb or can’t speak/hear/see.

2. You will expand to meet the new normal.

They will enrich your life and help you find a purpose or philosophy that might have remained out of reach, and they will definitely help you find your inner warrior.  Maybe reading this you are still in the phase of wishing whatever is their challenge was on everyone else and not your little one; I’ve been there. I didn’t speak to friends (save one) for months; if I had, I would have wished the genetic disorder and Autism on their kid…happily taking on the role of doting/supportive friend. This phase will pass. And at one point you will need to decide it needs to be over because you have kids to raise and love and a life to experience.

3. Talk to and with, not about your kids.

No matter who we’re with or what I am answering, I include Téa in the conversation. “Téa, I’m going to fill so-and-so in on how you’re doing, is that okay? If you want to add something.” I assume she can understand me. I assume she will find a way to communicate with more than fleeting eye contact and a sound I have decided means “yes” and “more”. Because I have no proof she doesn’t understand and more than a gut feeling that she can organize some of what I say into useful information. The smart tip to “fake it till you make it” is what I live by it with Tutu. You’ll find it useful too – if only so your heart hurts a little less.

As a pin my dad bought me when I was 6 read: “why be normal”

Weirdly yours,

Ariana

 

From mom to drug dealing monster slayer.

pop

slide

toss

swallow

hope.

 

pop

slide

place

swallow

hope.

 

wrestle

slide

place

swallow

hope.

Tiny red boots in a tube.

My nightly routine of taking a low dose of anti-anxiety/depression medication always ends with hope.

Hope that these little pills which feel a little magic will soothe my mind and fortify my spirit.

Drug pusher.

The 2x and 3x daily routine of my husband and I pushing drugs on Tutu. Heavy duty anti-seizure meds that do as much good as harm.

Valproic Acid. Keppra. Clobazam. Ativan.

Now we swap some of those out for cannabis  which does help curb the seizures, and a big part of me is hopeful that we’ll be one of those families in a video that goes viral talking about how Tutu is an entirely different girl now – one who can walk again and who regained some of the use of her hands.

See? Hope – it’s nearly a religion at our house these days.

Friendly neighbourhood drug taking, drug dealing, soon drug smuggling (legally) mom.

Meds help me stay out of the cracks my brain falls into when I forget to take them.  I didn’t need them BR (before Rett).

Will they become like oxygen, something I can’t live without soon? Hope my doctor gets that referral in soon; all my follow-up and muscle-in is reserved for Tutu’s needs. I need to make sure I don’t run out for that.

Drugs are at once my aid and my crutch, with them I am armed against the monster named Rett.

And I wonder:  will the day come when I have shaped my brain and my nervous system in all the ways that are needed to stop seeing monsters.Monster2

 

Take The Step

One of the hardest things to do is take that step.

It’s true for all of us. At one point in our lives, each of us has to take a step that we are fearful of. Weary of. Unsure of where it will lead.  Curiously, for me, knowing exactly where it will lead is precisely why the step trips me up. Maybe it’s like that for you too.

Téa’s multiple seizures daily mean she is unsteady on her feet.  It means she looks like she is growing an off-center unicorn horn much of the time.

It also means that despite my wish to not always look like a PSA for special needs, I’m going to have to pack on my inner armor and put a helmet on my daughter.

It isn’t vanity that keeps me from taking the step to purchase a soft helmet online.

It isn’t shame, thankfully, I don’t feel embarrassment around my daughter’s disorder and all the stare-inspiring behavior it causes.

It has more to do with noticing that I experience life as an on-going war against Rett, and when the seizures rage and her falls make nausea surge in my stomach, I feel like I am loosing ground on the battlefield.

So who I am really waging war against?

Lot’s of things:  war against the imbecilic parents who don’t teach their children empathy the fearful, insecure parents whose asshole children grow up without a drop of decency or mindfulness.

War against the absence of funding for research that can put an end to Rett and so very many other disorders because people value the latest iphone/car/ one more dinner out more than they do contributing to the betterment of the lives of others.

War against my own moments of self-pitty. While evermore beautiful and meaningful our lives are because of our daughter,  so too it is equally harder.  My dad used to say that our children grow us up. I’m growing – we all grow; you, me to meet the needs of our children. I’m running trying to personally grow quickly enough to meet Téa’s needs and those needs require many of those steps that are difficult to take.

So how does one take those steps? Here are a few pearls of wisdom to start us off on building our necklace.

  1. Ask others how they took the step. How they faced it, and how they keep putting one foot in front of the other. It will do two things: first, it will acknowledge their hard work and everyone could use that. Second, you’ll actually learn a powerful skill that will help you take that step and own it.
  2. The step doesn’t have to be a stride. It can very well be a baby step. Afterall, it’s how we all start walking anyway.
  3. Falling on your face counts as a step.

Sometimes, the step, in fact isn’t physical. Those are the hardest – those are the ones that make you a warrior.

Ari.

Where are all the Autistic’s at?

A look at meetup and you’ll find thousands of groups for all kinds of interests and needs – some with 2 members, others with, again, thousands.

Screen Shot 2014-04-14 at 2.31.13 PMLook up “Autism” and you’ll see seven. Seven groups each one oriented to Aspies, to families, and those you just can’t figure out.

How is it that one of the largest cities in Canada on one of the largest social event platforms has seven groups which altogether boast less than 1000 members?

A search that adds 15 miles to my search criteria brings up only 2 more groups.

Hymph.

Where are mom’s like me and dad’s like Al going to connect? Where are they going to get a clue about how to navigate Autism-land in Toronto?

Seven years ago meetup introduced me to some of my closest friends. I was a new mom, in a new city.  Now, once again I am a relatively new special needs mom in a new city. Are we looking at Wee Wiggles II? Are we looking at RedBootWarrior the meetup? Is this supposed to be where I start the journey of what RBW will become?

Hm.

A friend recently said the PTSD (Post Tramatic Stress Disorder) that is moving will fade out in a month….or three….fuck.  She mentioned this on the heels of my confession that I wake up longing for bedtime. Three months until I have a dash of energy and an inkling of a damn? I can’t rush bed-time for that long.

At The Village where Téa does ABA for three hours everyday I tell them, “Push her. She is playing you. She knows she is cute and she is owning your ass”.  I have only praise for this centre that will never live up to Abili-T for me (for the single simple reason that no place can or likely ever will).

Abili-T was Téa’s place but it was also mine. The team was my team as much as they were Téa’s and with all the care that I’ve taken to ensure a smooth transition for Tutu, I seem to have forgotten that I needed a smooth transition too.

Smooth is the opposite of what I got. From Montreal departure to Toronto arrive took 6 weeks.

I drove the 6 hour trip with the girls on Aug 16th after flitting from house to house on the generous spirits of close friends.

The moving van with most of our belongings arrived Sept 25th at 8 pm. Al arrived Sept 28th at 6pm with the second 16 FT truck that he drove himself.

Now, amidst enough furniture to outfit three houses and dozens upon dozens of boxes that I don’t even want to open we are somehow expecting to feel like we are home…finally. The girls correct us when we say “we’re going home”. Naya says, “No, we’re going house”.  Sienna’s eyes widen and she asks, “to Montreal?!!”

To the adage, “fake it till you make it”, I reply that I don’t even remember what to do to fake it. I miss knowing that friends are nearby – even if busy in their own lives. I miss sending out a line in an email or text and having friends I could see. Just. Like. That.

I know it will come. I am just not believing it yet.

If you are moving or recently moved, know that it’ll suck for little while and then it will get better…after all, as my mom says, “there is no evil that will last 100 years, and no soul that can tolerate it”.

Ari.

 

Sienna the Lama

Screen Shot 2014-09-09 at 11.11.40 AMHer first tooth was knocked on our the playground when she face-planted off the monkey bars. She cried more about not finding it in the dirt than having lost it.  Afterall, proof of tooth=$$.

The gap in her mouth was proof enough, I said.

“So you’ll give me money anyway?”

“You mean the tooth fairy?”

“Mo-ooom, there is no tooth fairy, it’s you and daddy who give money. Actually, Naya gave me money last time and you didn’t”

“We gave Naya the money. But wait, what do you mean there is no tooth fairy?”

“You’re the “tooth fairy”, a tooth fairy isn’t real”

“But you say you’re a fairy and you change the weather”

“SHHHHH!!!! It’s a secret!”

Ah.

May the magic live on in this human being, forever.

Since the time of that conversation a couple of months ago, Sienna has lost all front teeth.

All that tooth loosing has created pools of saliva in her mouth. She spits more than a baseball player. More than the bored kid on the street with his pants around his knees.

It goes into the sink but sometimes, it goes into her hair. Yeah. Yuck.

Or into her tea. Maybe worse than the hair.

We think she is part Lama.

We’ll keep you posted.

A.

A thought to start your day

Recently I wrote a letter to a committee about funding.

It’s not easy to write those letters. They force you to face a certain reality about your life that is sometimes hard to face.

Your time matters to me, so I won’t waste it going on and on about how important it is to find ways of getting kids on the spectrum help.

Thanks for being here and for being part of the picture – it makes a personal difference to me and in time I hope it makes a meaningful difference in the lives of families and children/young adults on the spectrum.

A.

At Three You See.

At Three You See.

At three
you can see
disability.

At three
it’s easy to see
the lag.

At three
there is no passing
as younger.

Don’t ask don’t tell
what the hell

she’s well.
She’s, well….
She’s swell.

At three
she can see
more
do
more
be more
of herself.

We work more
think more
encourage more

So that she can be all that she can be at three; find her spirit at three; discover ways to be free.

But she won’t be

likely

free.

She has been

robbed and trapped.

Fight the Rett beast

keep up the might

bright

girl whom we love so.

 

Talk to your Girls

The trend in Awareness Raising brand messaging has been going strong.

(if with debated success) for years.

This 6 year old, and nevertheless equally profound (sadly), Dove “film” which is really an ad and a very savvy use of cause marketing sparked a thought when it suggested I “speak” to my girls before the media does.

What I noticed, is that my own Awareness Raising talks to my three girls, the youngest of whom has Autism and significant delays of every kind, are always about how they interact with others, not as much about how they see themselves, value themselves, interact with themselves.

There is no talk about how they are smart/pretty/good/nice/blah/blah/blah they are. That’s all subjective. That’s all fake. And frankly, I’m not convinced those are adjectives I’m interested in promoting in my children.
Rather, I talk about an action they took that showed their empathy, consideration for ANOTHER, effort.

I speak about the time they took to problem solve and how they showed thoughtfulness, compassion, and put another ahead of their own want. I praise them for stepping into the scary place of standing up to someone who is mean to a friend; praise who they are as citizens of the world. I purposely comment to others within my girls’ earshot about a kindness they showed. A fear they over came.

Their self-esteem will bloom from that.
Much as the self is implicit in “self-esteem”, it is less about the “self” and more about the “esteem” with which we treat each other.

This is why I started Red Boot Warrior. To amplify the voice of those Awareness Raising campaigns that raise our understanding, our common-sense, our knowledge, our spirits, and our humanity. Neuro-typical and not; heavy and not, able and challenged.

The folks behind Dove’s campaigns have been doing excellent, intelligent work promoting their good products with great campaigns about the responsibility we have in who we listen to, and reminding us to that sometimes we need to be louder than the chatter around us.
Right now, today, the chatter from parents of kids on the spectrum can get drowned out by the droning of policy makers.

So. What will you share today that will raise awareness and raise your self-esteem? How will you treat children like my three-old-daughter? Will you become a living, breathing awareness raising human being whose self-esteem is measured by true worthiness? Likely, yes, afterall you’ve stayed with me this far.

Ready to feel that little bit better? Stronger? Gooder? Please, share and comment now.