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.

IMG_2296

$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.

IMG_2476

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.

IMG_2612

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.

 

Advertisements

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.

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.

Image

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.”

Image

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. http://www.autismspeaks.ca/family-services/toolkits. 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. http://youtu.be/ejpWWP1HNGQ.  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. http://autismcrisis.blogspot.ca/2006/10/whats-autism-anyway.html

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….

A.

The Invitation

This morning I’d like to invite you to visit The Invitation with me.

It’s a departure from what I typically write about and the words are not my own; but to me, it feels as though they were spoken straight from my heart.

This poem was shared with me by Ketan Lakhani, a dear departed friend who was a facilitator/mediator in the Apartheid era.   To me, this poem is an anthem for my life and what I yearn to know about the people whom I meet.

Over the years and with new readings of this poem I notice that there are different sections that move me depending on what is happening in my life. Right now, one that stirs me is this one.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

Here it is, The Invitation.

The Invitation by Oriah

It doesn’t interest me
what you do for a living.
I want to know
what you ache for
and if you dare to dream
of meeting your heart’s longing.

It doesn’t interest me
how old you are.
I want to know
if you will risk
looking like a fool
for love
for your dream
for the adventure of being alive.

It doesn’t interest me
what planets are
squaring your moon…
I want to know
if you have touched
the centre of your own sorrow
if you have been opened
by life’s betrayals
or have become shrivelled and closed
from fear of further pain.

I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

I want to know
if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you
to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations
of being human.

It doesn’t interest me
if the story you are telling me
is true.
I want to know if you can
disappoint another
to be true to yourself.
If you can bear
the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.

I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.

I want to know
if you can live with failure
yours and mine
and still stand at the edge of the lake
and shout to the silver of the full moon,
“Yes.”

It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away.

I want to know
if you can be alone
with yourself
and if you truly like
the company you keep
in the empty moments.

To read more from Oriah: http://www.oriahmountaindreamer.com/ and there is also facebook.com/oriah.mountain.dreamer.

The Warrior Project

Autism can seem like a far-away idea. Something that happens to other people’s children. But, with 1 in 88 children in Canada diagnosed with Autism, suddenly “other” becomes “cousin”, “daughter”, “neighbour”, “friend”. 

You know I’ve been motivated to launch a series of campaigns and programs to address the issues with the current medical and governmental lacks in the world of Autism (ASD) and Neurological Disorders.

When I heard about the Aviva Community Foundation’s contest, I had to submit a project. Winning means I can launch initiatives with speed and efficiency! Here’s the entry. Please, have a look and VOTE. Link below.

Image
Approximately 30,000 pre-school aged children in Canada have an Autism Spectrum Disorder (ASD).  That’s more than the prevalence rates of pediatric diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome COMBINED.

The inspiration for The Warrior Project comes from a problem with two parts:

The First: The wait lists for diagnosing Autism currently run between 12-24 months, a terribly debilitating period of time given early diagnosis and intervention is key with Neurological Disorders. When discovered early (as young as 18 months of age, though most commonly between age 2-3),  the opportunities for children with ASD to improve are exponentially higher, seeing children move towards the higher functioning end of the spectrum. Private assessments cost between $2,200-$3,000 making them prohibitive for many families across Canada. But what this means is that for parents who aren’t able to cover the cost of a private assessment, their child’s best chance to advance (between age 2 and 5) is shrunk by the wait lists.

This introduces Part 2 of the problem: In Quebec and Ontario, a diagnosis means children are now eligible to wait for services, not actually receive them. Wait times are between ONE to TWO years, and – horrifically – sometimes longer.

What does this mean? That a child who is 2 1/2 yrs old when their parent suspects there may be something wrong, will be older than the window for Early Intervention, and in Quebec, too old to receive public services which only support families until the child is 6 years old.  They will have missed the window in which the brain is most plastic and able to develop, and they will have missed the short period of time allotted to receiving government funded services.

Okay, so why not pay for the assessment and the services privately?

Great question. Happen to have $40,000-$120,000 in pocket change? Perhaps in the couch cushions? This is the cost EACH YEAR parents pay for the programs to give children a chance to uncover their potential, gain connection, and cultivate life skills that will allow them to lead a full-filling life.

Our Solution:  The Warrior Project. A three-part action plan to raise awareness, slash wait times and fund families.

Image

Cast your vote, here: http://www.avivacommunityfund.org/ideas/acf19113

Winning funds will launch:

A) Nation-wide Advocacy and Awareness campaigns run in public schools and private institutions and will develop into conferences. Called “Sparx”, these events address bullying, fund-raise and give a voice to children with differences in integrated classrooms.  Each year, the program theme changes and gives students an opportunity to use creative/artistic skills to showcase how their voice is as unique as that of a child with Neurological disorders.

The events facilitate life-changing awareness that can break cycles of depression, anxiety and marginality, and positively impact esteem. For siblings of children with disorders, the events foster a sense of community acceptance. For the child with Autism, their voice gets a positive platform, and for those who think they are untouched by Autism it is an opportunity to see that their classmates aren’t odd, or scary, or distant.
Image
Supported by high school student volunteers, the events showcase how connected we are to each other, and how important it is that communities act to advance the well-being of all our members. The project encourages the development of socially minded personal initiative, and leverages positive peer role-modeling.

B) Assessment-a-Thon events across Eastern Canada bring professionals to children in an unprecedented move towards early diagnosis and intervention, this part of the project targets the outrageous wait times for a diagnosis.  Partnering with leading doctors, therapists, and professionals and using professionally designed, best-in-class protocols, we will deploy a series of assessment caravans and venues to reduce the number of children on public wait-lists to eliminate socio-economic disparity for hundreds, if not thousands of children and youth.

[Like what you’re reading? Please contribute your vote, http://www.avivacommunityfund.org/ideas/acf19113%5D

Community Impact: Existing foundations and charities in this area fund important research. They do that well. We do this well, we work from our strengths and we want to give children with Neurological Disorders a chance to do the same.  Early Intervention increases the chance for kids to become contributing, fulfilled members of our communities. Fundraising provides much needed support to parents and raises the character and caliber of communities across our great country.
 
Sustainability: Each event, each campaign is run as an independent project, allowing us to fulfill our goals of advocacy, detection, and funding without long-running projects. Our approach gives us flexibility and relevancy each and every time we act.  With your help, your funds, we can widen the window for hundreds of children; broaden the minds of thousands, and help them find the warriors within.

The Warrior Project was created by the Red Boot Warrior. A young mom of three daughters, the youngest of whom is 2.5 and on the spectrum, who found a warrior within and a muse to channel her expertise.

Thank you for considering our idea; your support allows us to launch this initiative with speed and efficiency. Please vote for The Warrior Project today.

HOW TO VOTE: http://www.avivacommunityfund.org/ideas/acf19113

LIKE FACEBOOK.COM/REDBOOTWARRIOR

It’s a tween thing

So.

In a personally profound declaration of love and adoration for my eldest daughter, Noosh, I reached my hand back to touch her fingertips and glance at her at a red light while driving home from gynmastics.

Enter stage front seat:

mother I like you, Noosh. I like you and love you and think you’re absolutely wonderful.

daughter I hope I find my pants.

:l

Good lord, not even a smile or glance my way!

At dinner tonight when I recounted the story, she giggled nervously.  She’d been so absorbed in her own thoughts she hadn’t even registered what I’d said!

Just how young does the “tween” range begin??

A.

Is your kid severly enough impaired? Strangely, you might hope so.

There are quite a few tasks that become neglected when you set course in the brave new world of special needs. Among them, is mail reading.

TAX SUBSIDY COMIC copy

Learning that your child has a developmental disability, in our case, possibly Autism and certainly some form of cognitive developmental delay is akin to being launched willy-nilly into a brave new world where you don’t know a thing or a soul and haven’t a clue as to what comes next.

You’ll be interested to know that in this brave new world, regular stuff, like mail remains a tedious task. Ah, normalcy.

This evening I took on the seemingly benign challenge of getting through the correspondence that’s been screaming for my attention from my desk. It proved, in fact, not so simple task but a foray into the very fires of that brave new world.

At our house, I’m interested in everyone else’s mail but my own; and with all our daughters aged 7 and younger, that leaves me with only my husband’s mail as a diversion.  In our 11 years together, I have taken the initiative to get the mail 3 times, so the task of retrieving it from the mailbox at the end of the street has fallen to him.  My task is to look at it, experience panic, and place it atop the artfully constructed paper pile that I imagine myself wrestling into control.  Someday, after an Ativan.

This evening, I resolved to address as much of the pile as I could gather in one hand.  This was the bounty: a letter confirming Téa’s RESP, a letter from our health insurance confirming that we still have coverage,  a pre-approved loan application for $15,000 at the humble rate of extortion,  and a hefty envelope from the CLSC (local medical/social services clinic in Quebec) where Téa’s public medical/social needs will be “managed” [scoff, snigger, shaking of the head].

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.   Let’s pause for a moment to consider that I don’t read/understand French with the same fluency as English and that I live in a largely English-speaking area west of Montreal.

Ask me how many of these I have already filled in. SEVEN.

How many more of these am I going to have to fill out?

I have copies of many of them and it occurred to me that creating one Master summary and adding to it each new development/assessment/milestone reached would be an efficient way to keep a record of everything that takes place in and around Téa’s developmental journey.

It also occurred to me that we parents need a centralized online portal that all agencies can access and parents can give authority to access. In my ideallic imagination, there lives a portal with secure access for each practitioner I connect with on my daughter’s behalf including digital copies of all assessments, interventions, updates, reports, and pending needs assessments or appointments. *

Along with 8 back-to-back pages to fill in and return, out slid forms for the Provincial Handicapped Tax Subsidy.   With faked calm I opened the envelope.  Scanning the instructions for answers to:  did I have to use blue pen or black?  Did they want all cap’s? Which professional was considered professional enough to complete the professional copies of the form?  Did I need to sign in blood and tears or was a handwritten signature enough?

And as I scanned, a conveyor-belt of questions strolled through my brain:  is my daughter handicapped enough to qualify for the assistance we need?  She has an as yet undiagnosed variation of a gene that seems to be the cause of the impediments in her development, and she has been assessed as being on the Autism Spectrum – possibly as a result of the unnamed genetic variation.

Maybe it’s a personal fear of rejection, but really, how sick – how  delayed – how impaired – does she need to be for our family to qualify?  The expenses to get her the best care we can get are very large and VERY necessary.  Would this be understood by the faceless person considering our request as being very legitimate too?

As a rule, your impairment is considered severe and prolonged if it meets both the following conditions:

  • It has lasted (or is expected to last) for at least 12 consecutive months.
  • It has significantly limited your ability to perform a basic activity of daily living (seeing, speaking, hearing, walking, eliminating, feeding or dressing yourself, or functioning in everyday life because you do not have the necessary mental or physical functions).

As I took a pen to begin to fill in her name my breath wrangled itself, tortured, from my nearly fully compressed lips and as my hand moved to place the tip of the pen to paper I hit a wall of emotion and sorrow and disbelief so profound that I could not write her name.

Believe me, If I didn’t need a tax credit I would not apply. But  little as it is, every cent counts when the costs of caring well for a child with Autism are in the $50-80,000 a year range.

I wouldn’t fill in her name.  Call it what you will – a wholly unrealistic assessment of the situation…optimism…fear…maybe it’s all of that and more.  The truth is, I couldn’t write her name because doing so makes it so; makes it real in a way I refuse to accept.

My daughter is not handicapped.   How can she be?  How can this be?  Plus, my daughter is not handicapped.  From the bottom of my believing and possibly naive heart I feel that she is not handicapped.

And yet, she is.  Because she “is” a way makes her have to work harder to get what other kids get with relative ease. This vibrant, intelligent, problem-solving, skill-acquiring little girl who has the best attitude and joy-inducing smile on earth is handicapped like the golfer; and the Provincial Tax Subsidy goes (a little) way to helping us cover the interventions and therapies and specialists who help her correct and adjust and develop so that her score – like that of the golfer – improves and she can enjoy the game of life with more ease and pleasure.

That night, I stepped into a brave new world that probably sent my mail-opening motivation waaaaay back.

I’ve written before about discovering the Warrior in me that steps up in times of adversity. In such moments, my inner-warrior takes a look at what’s happening inside my heart and my head and says, alright, hon, step aside I’ve got this. And I let her.

Today, it seems – without letting me know – my warrior took the day off. Today I am just, mom. With all the strength and all the love and the fear that being mom involves.  My warrior doesn’t have aspirations for my children, she has mental muscle and a fucking indefatigable energy to fight and win.

I, as mom, have many definitions and aspirations for my girls. Handicapped isn’t one of them; and in those moments when I am more mom than warrior, and have to consider that there are different possibilities for my girls than I ever had to acknowledge…well…in some of those moments I crumble in the face of what needs to be done and let the warrior take over.

And guess what? Little by little I see that there is a blending of mom and warrior and we are fusing with each challenge, each possibility, each milestone that comes.

A. Warrior

*I’d like to build one. Who’s in?  If you want to help out by participating in the design, architecture, coding, and conception REACH out to me. This would be a parent-driven initiative, not a government/hospital one.

Parent’s are said to be the very best advocates for our children and I for one whole-heartedly believe it.  You want to know about my child? You need to know about her history? I will grant you temporary access and you can get it. All results will be compiled there. I am in charge. I lead the charge. And so do all other parents who like me, have found their inner Warrior.

Perhaps it exists and I don’t know of it yet. If you do, for goodness’ sake, tell me! I’ll tell every other parent/guardian in this mess of a system.