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.

 

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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.

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.

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.

Million Dollar Babies. Nope, costs more than that.

IMG_2233

In researching an article for ilovekiddeals.ca I came across a 2013 Fraser Institute study  that pegged the cost of raising a child at $3,000 to $4,000 a year (seriosuly?). Assuming as parents we raise kids only until the age of 18 (again, seriously?) means each child costs parents $72,000. This figure excludes housing and excludes child care costs, which tells me that the Fraser Institute doesn’t have a clue.  You can’t raise kids without housing and child care.

In 2011, however, an analysis by MoneySense in 2011 estimated it would cost considerably more: $243,660. Which in my limited professional experience but very thorough chattering with friends and looking at my own sad state of affairs lately seems more in line with actual expenses.

This post was inspired by this article which I encourage you to read. It’ll blow your mind.

In our case, as parents of a just turned three-year-old little girl on the Autism Spectrum,  the costs look more like this – and I’m only sharing with you (much to my husband’s chagrin) the costs PER MONTH FOR ONE CHILD.

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$2,600 = 20 HRS ABA

$350 = Afternoon pre-school/developmental program

$1,000-1,200 = ABM specialized therapy available only in Toronto (6 x per year)

This excludes feeding Tutu, clothing Tutu, housing Tutu, basic needs care, gas to get to all the doctor appointments, therapies, classes, specialists….you know, the basic things we do as parents in the developed world to actually take care of our kids.

Do you know how many families have MULTIPLE children on the spectrum? Imagine. Now consider making a donation to a foundation that supports a child directly rather than a foundation/organization/center.  It’s the parents that need the fundraising, honestly.

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Happily, we have THREE children; two of the these three lovely sassy ladies do gymnastics, one take piano and both enjoy soccer in the summer. Relative to most families we know who ski, vacation, eat out, and take part in multiple extra-curricular activities, we’re pretty light on the extra spending front.

And still, we’re at a whopping $3000 per month PLUS $1000 every six to eight weeks for a therapy you can only get in Toronto – for therapies that give our special needs child merely the education she needs to advance through her life; understand me, the ABA is necessary for her development. Her attendance at the afternoon program for kids with developmental delays is necessary.

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And there are thousands and thousands and thousands of families LIKE OURS in Canada.

So, why is the government in Canada and one of the countries leading analysis institutes missing every clue about what it actually takes to raise a child (1 in 67 now who are on the spectrum) and not responding accordingly?

I care about foreign aid, I’m big on helping the most needy. What I’m keenly aware of though, is that most needy includes Canadian Families with children with special needs.

What’s it going to take? A law-suit like in Vancouver or Calgary? If so, whose in?

Here’s a link again to that article, Million Dollar Babies, if anything, costs facing Canadian families is more damning now than it was in 2011.