From mom to drug dealing monster slayer.


















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 sooth 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. Ativan.

Soon, we’ll be starting to give her cannabis to see if that helps 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 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.


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.


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?


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”.



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!”


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.


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.


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.


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.


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


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.


In researching an article for 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 inline 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.


$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.


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.


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.


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 responsibly 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.


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.


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.


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!”


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 arrive 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 was surprise and questioning, and what I understood is that he couldn’t understand why this little girls 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 ear shot 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.


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.

Can someone tell me: is my daughter Autistic or does she have Autism?

If you think that as a person who isn’t touched by Autism, you aren’t sure how to describe it or whether you are being impolite or incorrect, rest assured, my kid has Autism and I’m as lost as you.

We noticed our two-and-a-half year old, Téa wasn’t reaching her 12 month milestones. By 16 months, with the trained eyes of parents to two other little ladies, we knew we needed to start asking deeper questions. Our journey took us to the mouth of a wolf called Creatine Transporter Disorder (CTD) that nearly devoured me whole and had me begging that the disorder was “just Autism”.

Eight months later and with CTD ruled out, and a tag of Autism formally affixed,  I’ve come to think a lot definitions and meanings.

It’s likely you’ll meet some parents who are convinced it’s a condition to be cured, others who are adamant that its a way of being and there is nothing wrong with their child.  As a new comer to this brave new world, I’m still unclear: is my daughter Autistic or does she have Autism?

It’s a subtle difference, yet, subtle can be very powerful.

First, if she is Autistic, this is as much a characteristic of who she is as the conditions she faces. It means, to me, that no matter what advances she makes and how “un-Autistic” she may seem one day, she will still be Autistic.

On the other hand, if she has Autism, somehow, the implication is that perhaps one day she won’t have it; that if she continues to kick-ass in lessons with her therapists (she goes to Abili-T now), and we continue to lavish glee-full eruptions of praise, slow things down for her to be able to gain mastery of small tasks and gestures, talk to her slowly and repetitively (all the while assuming she understands), the day may come when Téa steps off the Autism Spectrum and into the neuro-typical pool most of us find ourselves in.

Of the many grueling aspects of getting an ASD diagnosis for Téa, one I continue to struggle with is how to talk about Autism. How to define it to my other young children and to family and friends who are comfortable in asking, and how to describe how Autism manifests in our daughter – which I’ll tell you is ever changing.

Having described it at our house as a word that describes how a person’s brain organizes and uses information was simplest way I thought of to explain it to our 6 year old  and 4 year old.  And yet it falls short, because understanding the word doesn’t make it any clearer to them; they still worry about what it means about their littlest sister, and mommy can’t quite figure out what to say without saying things that totally un-pc.

I am keenly aware that how we define or describe  something says very much about what it means to us and can shape perceptions and feelings for others.

So, as a parent with a young child on the spectrum, see myself as having a special responsibility for how I talk about Autism  –  even as I tease out what to say about it, and despite being certain that what I say will change as I journey along this brave new world my daughter was born into and brought us all along with her. It will change as I become more comfortable with the diagnosis. It will change the more I talk about it and idea’s get clearer, and it’ll change as my daughter grows and the day comes that I need to explain this to her.

In a house where we don’t strive for normalcy (I was the proud bearer of a purple/yellow “Why Be Normal”) and discussions of different/same don’t often arise because by-and-large for our kids there is no “one” normal, is our two-and-a-half year on who experiences life on the spectrum different?

According to our family philosophy, she isn’t. And yet, she is.

The signs of difference are everywhere and in everything: what Téa can do, to how she reacts in different settings, to different things, and with different people.  Which is why the “See Things My Way” campaign created by the Miriam Foundation has the potential to be so very profound; it if they take it all the way – as I would if it were a campaign I was running – it can help create healthy, smart, relatable definitions that foster understanding across the spectrum which to me, encompasses all of us; because we are all somewhere along the spectrum of Typical.

As I think about how I see things and how I talk about things, my mind jumps to how we are defining Autism in our cultures and societies. How are we permitting government services, and the revenue agency to define it?  How are we accepting that medical bodies define it and classify it?

And what role do we need to play in those definitions as the parents, caregivers, and family members who understand it most?

I learned recently that Aspergers is a culture, not a neurological/communications disorder.  I couldn’t wrap my head around it,  but I can say, ok,  if as an Aspergian you tell me it’s a culture, then please, tell me more and  eventually I’ll understand.

So as my family and I embark on this journey of exploring what it means to live with Autism, raise a child with Autism, and exist in a typical society with ever evolving definitions of oh so many things, I’ll keep telling you all more, and eventually, I’ll understand and hopefully you can too.

A Mini Sib-Kit For Helping Kids Understand Autisic Siblings.


Téa’s eldest sister is a fireball. The kind of kid for whom you always need to be at your best and brightest because her questions, insights and observations rival those of thoughtful, intelligent people many times older than she is. She’s seven. So imagine.

When we opened up the conversation about Autism at our house I tried to edit all the worries, thoughts and perceptions I have and give the girls a clean, non-judgemental, totally PC, and simple description of the word and what it might mean for Téa.

I came up with: “Autism is a word that describes how a person’s brain works. Téa learns differently than you and your sister and so mom and dad are discovering how she learns so that we can help her learn just like we help you learn.”  Six months later,  during an interview with high school students doing a philanthropy project, Naya shared with them that she worries about her little sister because she is the only person she knows with Autism. And I suddenly saw alllllll the holes that my answer left behind.

I’ve been seeking accurate and age-appropriate ways to explain things better as the girls’ questions and concerns arise.  So to that aim, I asked the director and senior therapist at Téa’s school whether Naya could participate one morning, seeing first hand what Téa does in her “school” and meeting other kids on the spectrum. The answer was a resounding, positive, happy-to-have-it-happen: YES!!

This morning, as I drove Nay and tutu to the ABA centre she attends every morning I started to prime her.  I had visions of pointing and staring and inappropriate questions. And I was hoping to edit Naya, so to speak, so she would be her most composed, polite self.

“Naya, there are a couple of things I need you to keep in mind for this morning….”.

Naya: “Yes?”

Me: “…uh……hm……” This was me realizing that what I was about to say was less about her possibly “inappropriate” behaviour and more about my concerns over how the morning would play out.

“….just no pointing please.”

Nodding, Naya says, “o…kay…I can do that.”


Right. End of that conversation. Why? Because if there was ever a time when a kid ought to be free to explore her doubts, questions and concerns it needs to be at a centre where they specialize in helping parents understand and helping kids close the gaps. Because they can do what I don’t yet know how to do as well as I’d like and that was the whole reason for her to attend anyway, right?

Because my own thoughts are jumbled;  I’m trying to give my daughter positive messages about difference, discrimination and empathy – keenly aware that what I say shapes what she understands and I am not sure how to tease this all out for myself. So I did what I have only recently learned to do: scale it back. Keep it simple and let things play out. That’s my moto…for today. It changes nearly daily.

So much about what our family is going through is far outside my control and experience.  There are moments when I feel a soul crushing weight, and I am too defeated to even attempt to wiggle out from under it.  What the heck do I know about coaching kids though this? Apart from a fairly keen sense of intuition (thank God!), I am witness to my every shortcoming in this area and so I’m looking around and asking around and spackling  together information and ideas into possible sound bites of reassurance that I can dole out like granddads’ do candy.

So, in keeping with keeping it simple and building my stash of sound bites, let me share a few links and tips I’ve found useful so far in helping our daughters (seven and five) navigate having a sibling with Autism:

1. TOOL KIT: Autism Speaks (both in Canada and the US) have a series of tool kits. This one is for siblings and is a workbook intended to be interactive for us and our kids. You will find others on the site for teachers, family, etc.  A satisfactory beginning to uncover questions and worries and give first answers.

2. PERSPECTIVE: This video from a young teenage girl named Rosie is fabulous “mini film” and is her worlds.  Excellent for giving us and our kids an idea of what it is like for some kids on the spectrum.

3. INFORMATION For moms and dads, friends and family, this post by Michelle Dawson is one of the best I’ve read so far. Not clinical and also not “dumbed down”. It’s a good foundation for understanding the sameness as much as the difference between the typical and atypical brain.

Without a doubt, there are many more resources out there.  I invite everyone who is reading this to include useful/relevant links to resources, videos, posts that have helped you or that you have come across.  If you are a professional and would like to let parents know about your service, please send me an email and we’ll take it from there to get the word out in a non-solitious way. :)

I’ll let you all know how it went today….