Million Dollar Babies. Nope, costs more than that.

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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.

 

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

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

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

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

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

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

FIRST, THREE KEY INSIGHTS.

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

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

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

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

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

There really is no end to what you can do.

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

THE SCENARIO:

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

ADDRESSING THE GROWN-UP.

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

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

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

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

These are the tips for addressing adults:

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

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

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

ADDRESSING THE KIDS

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

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

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

Here are the three tips for addressing kids:

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

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

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

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

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

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

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

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

See you out there.

A.

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

Shit. Oops, Sorry! Merde.

Not long ago I received a hefty envelope from our local provincial medical centre, the place where our daughter Téa’s case will be managed.
In it was an intake questionnaire in French with a post-it note apology from the social worker, saying she had run out of the English version.  I don’t read/understand French with the same fluency as English and I live in a largely English-speaking area on the west island of Montreal.

The questionnaire is intended to capture information about Téa’s birth and developmental history and serves as the starting point for service acquisition in the public sector.

As you can imagine, it’s pretty vital that I understand what I am being asked.  Though my husband was educated in English and French, I am the one who is the primary caregiver to our daughter and the only one who can answer any and all questions related to Téa’s birth, infancy, history,  progress and interventions we have already put in place for her.

This means that even with him by my side translating the questions and then translating my answers, MOST of the nuance and context going both ways, that is: what I am understanding from my husband about the question and what he is understanding from me and then translating – are LOST.

Most of us – even though we speak French – when dealing with matters as important and delicate as these prefer and often need our native language; and while that may introduce the argument of whether a version of each form needs to be made available in everyone’s native tongue, no (but would’ it be great if it could be??), we’re in Canada and an English form should be available in largely English speaking areas – even in Quebec.  If banks translate their automated tellers into mandarin in areas where their client demographic is Asian, then surely agencies created to service we the citizens can stock enough bi-lingual forms that I don’t get a French one with an “Ooops, sorry!”.

This got me thinking about a recent post in Huff Post from a fellow-Quebec mom with an Autistic child who asked whether she ought to leave the province given that her son didn’t – and likely wouldn’t ever – speak French. Linda poses what I see as a very complex challenge: should her son leave Quebec.

We suffer the worst access and wait-lists in the country. Her son is now 14…my daughter is 2 and a half. And I’m thinking of leaving. We have family in Ontario, just as we have family here. We’re lucky that we have the love and support of everyone everywhere. But for families without relatives in other cities (ideally BC or Calgary if your child has Autism), do you stay or do you go?

What would you do?

Calgary gives parents $40k/yr with a valid diagnosis (then it drops after age 6, I don’t recall how much). In BC you get $22k/yr towards services from approved practitioners. You’d think we’d all have moved by now. But we don’t, for the same reasons that Lisa points out: we work hard to create a life, and work, and connections where we are. And there is much to love about Montreal, about Quebec.

And yet.

I am an Argentinian Jew who grew up in Toronto and chose to move to Montreal to follow the love of my life. How many strikes until you’re out in the game of the proposed new charter? Already I feel like a second-class citizen whenever I speak English in public. Now, as a family with a child with special needs, I am further marginalized and so is she.

At our house, there are three languages with English being the dominant one you’ll hear with an ever-increasing smattering of French now that two of our girls are in Elementary school, and flourish in Spanish.  If we go to Toronto, our girls will be enrolled in French immersion programs.

And yet…

This shouldn’t be a question of whether to stay or go. There shouldn’t be an absence of English forms. There shouldn’t be a disparity between English and French services…both of which fall grossly below the minimum necessary for our children.  There shouldn’t be a chasm so large that whole families fall into abuse, poverty, and depression between what is publicly provided for and privately available.

And yet, here we are.  Merde.

A. Warrior.