Progress

One foot in front of another.  

One. Small. Step. At. A. Time.

Maybe, just maybe, we will get there someday.

Wow, what a great video! You tell them, Megan.

   

So what say you?  Let's distribute this far and wide.

Share it on your social networks. Share it with your friends. Show it to your children.

But, most important of all ...

Do. Not. Limit.

Anyone.

H/T to Ashley's Mom at Pipecleaner Dreams

Cross-posted at A Primer on Special Needs and the Law 

When Words Fail Me ...

This video speaks for itself.

But the saddest scariest thing is this woman is not alone. She may be the only one brave enough to actually type and deliver such a letter, but I can guarantee you she's not the only one who thinks such thoughts.


 


Perhaps most of those who do would never suggest that a child, any child, should be euthanized or his "non-retarded body parts" donated to science. But they wouldn't hesitate to express their belief that such children should not be going to their neighbourhood schools, should not be participating in the same extracuricular activities as their "normal" children do; perhaps, even should not be taking up scarce dollars in our healthcare system.

We would like to believe that human beings are inherently good. That, most of the time, if we just give them the chance, they will do the "right thing".  Maybe we're right - maybe most are.

But something like this has to make a parent wonder how many more monsters are hiding in the darkness or behind the annonimity of their keyboards. And shudder at the thought.

H/T to Krista Lettues for the video

Cross-posted at A Primer on Special Needs and the Law

World Record

I think we just set the record for the world's shortest IPP meeting. Ever. Well, at least the shortest one I've ever attended in 15 years of being involved with special education.

The funny thing is how I walked out of the world's shortest IPP meeting feeling quite good about the whole thing. Better than I have in the past 3 years of IPP meetings, in fact. And that after half an hour as opposed to the usual 1.5 - 2 hour meetings.

The reason, you ask? Might shorter, in and of itself, actually be better?

No. No, not at all. In fact, we have another IPP meeting scheduled for next week (minus the subject teachers who were present today but with the addition of the autism specialist) that I am sure will run much closer to what I am use to.

No, here, my dear friends, is the difference. Today's meeting was (finally) chaired by a Resource teacher that gets it.

Previous Resource teachers, although extremely experienced, who should have (and, no doubt, did) know their stuff, were so stuck in their ways of doing things that there was absolutely no room for anything different.

Did I mention there was no room? Because, really. There. Was. No. Room.

I'm sorry, but the term dinosaur does come to mind. While they may have been very good at what they did many years ago, they clearly couldn't (or, I'm thinking, more likely wouldn't) adapt to the times. It was their way. Or the highway.

But our current Resource teacher, while relatively new to "Intensive Resource", has family members with disabilities and he really seems to get it. To get the importance of life skills for a young adult like the Blue Jay. To get the importance of life skills for so many of the students in that class.

I can actually see him building a resource program that will be so much better than what this school previously had. I can actually see it benefiting so many more students. My only real complaint is that the Blue Jay didn't have access to such a program three years ago, when she first entered high school, as she should have.

Well, that and the fact that when our previous dinosaurs teachers ruled the land, nobody (and I mean nobody) seemed to have any issue with the way things were done or the way they insisted things had to be done. They were backed up all the way.

Nope, nobody had any issues with them. Nobody except me, that is.

Interestingly enough, now that they've retired, I am finding people starting to agree with what I've consistently been saying (and thinking) for the past couple of years - that things didn't have to be (and, in fact, shouldn't have been) done their way. That, dare I say it, these particular teachers were the problem.

Apparently, now they are. But then they weren't. Go figure.

Humpty Dumpty Strikes Again

So, here we go again ... what's up with some people's apparent need to define words however they think they should be defined, either because it suits their own immediate purposes or ... it gets them in the news, perhaps? Hell, if I know.

My latest little rant involving a "study" (using the term somewhat loosely) by Canadian researchers on the effect "spanking" has on a child's future mental health. Which, apparently, is a two to seven per cent increase in the chance of said child later developing mental illness, such as mood and anxiety disorders, problems with alcohol and drugs and more.

Don`t believe me? Check this out:

Between two and five percent of disorders like depression, anxiety, bipolar, anorexia or bulimia were attributable to physical punishment as a child, the study said.

From four to seven percent of more serious problems including personality disorders, obsessive-compulsive disorder and intellectual disabilities were associated with such punishments in childhood.

Oh, where to begin?

First of all, I don't know how you might define the term "spanking" but to me it does not necessarily include "harsh physical punishment," or "pushing, grabbing, shoving, slapping or hitting as a form of punishment from elders".

To me (and, might I suggest, most sane people), a spanking means just that - "spanking" or striking a child's bottom, aka buttocks, aka rear end. Coincidentally, Wikepedia offers the same defintition. Now, I'm not among Wikepedia's hugest fans (then again, who exactly is?) but still ... it is what it is. And something tells me that definition would be very similar, if not exactly the same, for that of most people who stumble across this blog.

To be clear, in my mind, there is a huge difference between smacking a child on the bottom and smacking them up the side of the head; between smacking a child on the bottom and pushing or shoving them around. And I certainly don't equate the term "spanking" with "harsh physical punishment".

But who knows? Perhaps our Canadian researchers grew up in households where any kind of physical contact as discipline was taboo. Or, perhaps, they grew up in families where they were routinely "smacked around".

I suppose we should just be grateful that, unlike other supposed research studies on "spanking", this study actually excluded both sexual abuse and physical abuse "that left bruises, marks or caused injury". Wait, does that mean they included sexual and physical abuse that didn't leave bruises or marks or cause "injury"? You have got to be kidding...

But, presuming it's even possible to move past that little wrinkle, my point is that I'm pretty sure their definition of what constitutes a spanking does not equate with the majority of the world's or, at least, the majority of my generation.

But let's move on, shall we?

Heartbreaking

UPDATE: Today, Monday, January 23, 2012 is the first annual International Day of Mourning, born out of Dave's original blog post featuring this video. Spread the word, please.

 

The video speaks for itself when it comes to the issue of institutionalization.

The only comment I might make that many, many years ago (longer than this video might portray), the world was a very different place. Without even the often sadly-lacking services that we have now. For the parents that made that decision in those times, they don't need to be characterized this way.

Of course, that, in no way, justifies the money governments continue to pour into institutions (including the building of new ones) for the current generation. Because that ... Is. Just. Wrong.

H/T to Dave at Rolling Around in My Head via Ashely's mom at Pipecleaner Dreams

'Autism Night Before Christmas'

Disability is a part of my life. A part of my family's family.

Or, put another way, overcoming challenges is a part of my life. A part of my family's life.

So when I came across this little gem on 5 Minutes for Special Needs (a spot I make it to far too rarely lately), I just had to share. Because it's something I think just about any parent of  a challenged child, be they autistic or not, can relate to.

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

Now go read the rest of it. Please.

And  a Very Merry Christmas to you all.

Success

About our little adventure in trying to get out youngest daughter into that private school for learning disabilities ... I have only one word to say.

Success.

Okay, maybe nine words ... Thank you Lord. And Thank you Dept of Education.

And, trust me, the latter are not words you would ever often hear me say.

Next up is applying for the Tuition Support Supplement and seeing how much of a bursary she migtt be eligible for but we are definitely over the biggest hurdle...

Hard

So it's been a bit quiet around here the last few weeks. Meaning quiet at Free Falling. Not exactly so quiet in my life.

Having made a very last minute (although not because it was left to the last minute) decision to try and get the Kit Kat into our local, extremely expensive private learning disabilities school, it has, in fact, been rather crazy around here.

This was something we had been contemplating two or three years ago but because our school board refuses to give IPPs to students with learning disabilities and, without an IPP, a student in Nova Scotia isn't eligible for the substantial chunk of funding available through the Province's Tuition Support Program ... it pretty well seemed out of reach at the time.

So imagine my surprise when, sitting in a meeting with the Minister of Education a couple of weeks ago on what I thought were totally practically unrelated issues, I happened to spontaneously bring this issue up in a  discussion concerning inequality between school boards and I was told that students in our particular school board didn't need an IPP to access the program.  After picking my jaw up off the floor, I made a valiant effort to move on with the meeting because, trust me, I couldn't actually say out loud what I was thinking at the time. 

You see, back when this issue had come a few years ago I had approached the Dept of Education with the fact that our Board refused to provide IPPs for LD students and was told that no, I must be mistaken, that wasn't allowed but they would check into it and get back to me. When they finally did get back to me, a few months later, I was given the brush off with some comment to the effect that perhaps my daughter didn't require an IPP. 

Given that my Mom had been recently diagnosed with a terminal condition (this was about six to eight months before she passed away), I wasn't in any position to take on the battle so I let it slide.  And then, suddenly there I was being told that this change in requirements about the necessity of an IPP had been made right about the same time as I had made my enquiries of the Department. Imagine that ... funny how no one had bothered to let me in on that little secret.

At any rate, such began the mad rush to once again check out the school and begin the stack of paperwork needed to 1) apply for admission; 2) apply to the government for Tuition Support funding; and 3) apply for a bursary.  Because given our current financial situation, unfortunately there's very little we can contribute at the moment to the cause. Although I might point out that, ironically enough, back when I had initially inquired about this (and was turned away), we had actully been in a position where we could have contributed something to the cause.

And, oh yes, lest we forget, one more little detail to be taken care of ... the person who had advised me in that meeting that students from our Board didn't need an IPP to qualify for the Tuition Support program quickly backpedalled when I phoned him up a few days later; no, of course, he hadn't said that; what he had had meant to say said was that new program parameters now allowed a student to be "working towards an IPP".  Whatever that means. 

Well, apparently that meant that I had to very quickly call a meeting of the Kit Kat's Program Planning Team at her former school (wait, did she even have a Program Planning Team??!!) to see if they would agree that she should be working towards an IPP. 

But all things come to those who wait work hard enough ... or so I hope, anyway.

The private school agreed that the Kit Kat could start with the other students the first day of school even though we didn't (and still don't) know if we will get any funding from the Province.

And the Kit Kat ... well, let's just say she's working on "adjusting" to her new reality, tenuous as it might be.  She had been completely behind this move and I had warned her to think long and hard about it before I put the works in motion because once I started, there would be no turning back. I had also pointed out that her biggest challenge in the new school would most likely be her lack of friends.  Because it's hard for any teenager to change schools and make new friends.  And it's even harder for a kid with a learning disability. And harder again still for a kid with a nonverbal learning disability.

So, while we still don't know if we will get the funding to make this work, we remain hopeful.  And if the answer is no, there is, of course, always an appeal process. Oh joy, oh bliss.

In the meantime, while we await word on that and the Kit Kat adjusts to some very big changes in her life, I have now begun the even larger stack of paper work necessary to get some additional services for the Blue Jay. Because, one thing about my kids, they never want to play second fiddle to the other. Meaning if one is demanding all of my time and attention, the other one will be sure to soon follow.

Still Hanuted by the Resdential School Scandal

This really saddens me.

Last month I shared the story of Jeremy Meawasige, the 16-year-old Native boy with severe and complex special needs who is at risk of being placed in institutional care, not because his family is saying they can no longer care for him but because the federal government refuses to provide the respite funding necessary for his mother, who is still recovering from a stroke, to care for him at home. 

This is something she has done without complaint all for all of Jeremy's life prior to her stroke (and from reading the news reports, it sounds like she had no help at all prior to her suffering a stroke) and is willing to continue to do, as her health allows her. 

It's extremely telling to me that Mom is not simply saying "I've had this stroke, now take care of my son for me here at home" (which, really, it's arguable she has every right to do).  No, now that she is able to get around somewhat with the help of a cane, she is asking for less support than that provided by her Band last year. The sense I get is that she is only looking for short-term assistance to tide her over for her recovery.  Not that, of course, she shouldn't be receiving a significant amount of help with Jeremy anyway, stroke or no stroke.

And yet now the plot thickens Jeremy's story turns even more tragic - not only is the solution seen as institutionalization but institutionalization outside of Nova Scotia.  Not just away from his mother and his home. Not just away from his culture. But in another Province, entirely. Not that we should be surprised, I suppose, given how dismally Nova Scotia has handled the issue of providing appropriate care for children with complex needs.

But, wait, this sad, sad story isn't over.

Now I read that there are more First Nations children in care at this moment than at the height of the residential school system. For any that don't know, the residential schools had a catastrophic impact on Natives and became Canada's national disgrace, for which Prime Minister Stephen Harper apologized in 2008.

Uncaring, Unprincipled, Unacceptable

That I wrote about this very issue two years ago is a very sad commentary:

That a funding kerfuffle, that the federal and provincial governments cannot agree on who, exactly, is responsible to provide the funding necessary for aboriginal children with special needs to stay at home, with their families, where they belong is sadly, perhaps, not surprising.

But that this bit of 'government infighting' as it is so colloquially called has resulted in families being told that they may be forced to give up their children because the First Nation can no longer pay for their care and federal and provincial governments can't agree on who should pay is beyond despicable.

And if it was unacceptable then, what is it now?

Two years ago, I questioned where the  Nova Scotia government stood when it comes to Jordan's Principle.  I guess now we have our answer.

Jeremy Meawasige loves music, sunny days at the beach and his mother.

But Jeremy has extensive physical and mental disabilities. And the failure to resolve a dispute between the Pictou Landing First Nation and the federal government over how his care is paid for may result in his institutionalization.

"It’ll be over my dead body," said Maurina Beadle of the possibility her 16-year-old son might be institutionalized.

Jeremy is diagnosed with autism, hydrocephalus, cerebral palsy and spinal curvature.

For 15 years, Beadle provided 24-hour care for her son. She spoon fed him pureed foods, carried him, prevented his self-destructive tendencies and changed his diapers.

That, in itself, by itself, is unacceptable in my mind. That a parent should single-handedly have to provide 24-hour care for their child for all those years anywhere in Canada is quite simply unacceptable. 

But as if that wasn't bad enough, last year Jeremy's mother had a stroke.  Fortunately, the Pictou Landing First Nation stepped up to the plate, providing three hours of home care every day.  Last year that cost the First Nation $82,000.

But now, even as the cost decreases due to his mother being out of a wheelchair and now able to walk with the assistance of a cane, she is being told that her son might have to be institutionalized because no level of government is willing to pick up the cost of a small amount of home care. Home care to which Jeremy would be more than entitled to were he to live off-reserve in this Province.

Water Water Everywhere?

Once upon a time.

Once upon a time, I use to be heavily involved in international development issues, particularly as they related to children.  Yup, that's my catch, children.  Always has been, likely always will be.

But in my pre-disability days, before I knew what an IPP was, long before I had ever heard of a Program Planning Team (let alone knew that I was to be a member of many) ... I was involved with a group called Results Canada.

Results (they are active in many countries around the world including Australia, Germany, Japan, Mexico, United Kingdom and the United States) is a volunteer political action group dedicated to "creating the political will to end global poverty and needless suffering, and to demonstrating that individuals make a difference when they exercise their political influence".  It was pure political advocacy work - coordinating a media strategy; letters, letters and more letters to newspapers and politicians; community outreach and fundraising to keep the mostly volunteer organization going.

It was good work, work where you felt you might just be making a difference in the world.  I once had a politician ask me why I, personally, was involved in this work.  I walked him to my office and silently pointed to the picture on my desk of my then 3-month-old child. Enough said.  He got it.

Can one person really make a difference? Yes, I believe they can.  And how many times is that difference magnified when that one person works in unison with others of a like mind?

But life took over - a challenged child with a significant health issue sucked up much of my time and emotional and mental energy.  And as she grew (particularly as she got closer to school age), I realized that a person can only do so much.  And it seemed that there was much I could and should be doing to help others right here in my own Province.  I still supported (and continue to support) what Results is trying to accomplish but my political activity shifted much closer to home as I focused on assisting challenged children and their families navigate our province's educational and community services, to ensure that they had access to the services they are entitled to.

But then I received an email last week - an email "reminding" me that this year's Blog Action theme is water - access to clean water in developing countries, the over-consumption of water in developed countries, water and the environment and "water solutions".  One item in particular in that list struck a chord in me - and you might just guess why based on my previous involvement with Results.

One of the many issues we dealt with at Results was access to clean water - can there be any more basic a need?  Monthly actions and ongoing campaigns were picked based on strategic opportunity, political climate, context, and impact and issues were usually ones where there was a proven, cost-effective solution and for which there are not many champions.  Issues like child and maternal health, sanitation and hygiene, primary education and microfinance - that last of which is an amazing subject, by the way, well deserving of its own post. Perhaps for another day.


Did You Know?
Did you know that unsafe drinking water and lack of sanitation kills more people every year than all forms of violence, including war?  Water, or rather lack thereof, causes 42,000 deaths each week.

That more people have access to a cell phone than to a toilet? Today, 2.5 billion people lack access to toilets. This means that sewage spills into rivers and streams, contaminating drinking water and causing disease.

That every day, women and children in Africa walk a combined total of 109 million hours to get water? They do this while carrying cisterns weighing around 40 pounds when filled in order to gather water that, in many cases, is still polluted.

That it takes 6.3 gallons of water to produce just one hamburger? That 6.3 gallons covers everything from watering the wheat for the bun and providing water for the cow to cooking the patty and baking the bun.

That the average North American uses 159 gallons of water every day – more than 15 times the average person in the developing world? From showering and washing our hands to watering our lawns and washing our cars, we use a lot of water. To put things into perspective, the average five-minute shower will use about 10 gallons of water. No wonder the Navy doesn't allow Hollywood showers!

While these facts may be grim, there is hope for real solutions as more and more people around the world are waking up to the clean water crisis. Earlier this year, the UN declared access to clean water a human right and groups like charity: water and Water.org continue to work tirelessly to bring water access to the developing world.

No, I am not advocating that we all dress in ashes and sackcloth and repent for our sin of living in an industrialized country.  I know I'm not going to anyway!

What I am suggesting is awareness - it's been a long time since I, myself, have turned my mind to these issues on anything approaching a regular basis and when I looked today at the statistics on how many children die every day from lack of primary health care and clean water or for the want of simple and cost-effective interventions such as breastfeeding, prevention of mother-to child transmission of HIV, immunization, micro-nutrients, and oral rehydration therapy to treat diarrhea .... it makes me very very sad.  It reminds me of just how lucky my family and I are.  And it turns my mind back to the obligation we, who have so much, have to those who have so little.

Margaret Mead is famous for the words, "Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.”  

Whether we work in concert with those of like mind (be it paid or volunteer), teach and remind our children that there is a much, much bigger world than that they can see from their back yard or direct our attention on occasion to those charities with a proven track record of dealing successfully with some of the most basic of human needs around the world, I believe know we all have a part to play.

Memories

On the road again for our once every two year visit to the IWK, this evening I find myself sitting at Ronald MacDonald House reminiscing.  It's funny, really, I've been to this place so many times, too numerous to count over the past 15 years.  But tonight, somehow, feels different.

I've been here, very rarely, all alone while the Blue Jay was in hospital.  Very rarely because on the vast majority of times she has been hospitalized I have stayed with her in her room.  I've been here on occasion with just the Kit Kat and I've been here many many times, as I am tonight, with the Blue Jay.

But tonight my mind wanders back to those times long along ago.  I recall staying here once when the Kit Kat when she was very little (maybe a year old or less) while the Blue Jay was in the hospital.  There was my Mom, myself and little Kit Kat all in the Blue Jay's hospital room.  It was definitely going to get interesting.  That was, I think, the first time I ever stayed here, that anyone ever suggested I could.  So the Kit Kat and I stayed here while Mom stayed with the Blue Jay in the hospital.  Because it was going to be a little hard for all four of us to sleep in that hospital room, particularly when one of us was a breastfed infant.

I recall the Kit Kat crawling around the very room where I sit now typing this.  Crawling from the living room to the dining room to the delight of the various parents sitting at the tables.  I recall getting up every morning and heading to the IWK with the Kit Kat to spend the day with the Blue Jay and Mom.  And I recall coming back here every evening.

Then my mind turns to the numerous times I've stayed here with the Blue Jay over the years when she days full of various appointments at the hospital.   She was so little.  So cute. So excitable (think really cute flapping hands - yes, that is one of the signs of autism). And she absolutely loved staying here - it is a really nice place. Nice for the parents.  Nice for the kids.  Well, nice, if you don't stop to consider the reason why you're here.  Oh some of the stories I've heard ... They break your heart.

Another funny, though - the Blue Jay and I have stayed here so often that as the Kit Kat got older, she actually got jealous.  She had never stayed here after she had been an infant but had been in on occasion to pick me up so she had seen the place, checked it out.  Saw all the toys.  The kids.  The big screen TVs.  She wanted to stay too.  It just wasn't fair.

And it eventually ended up that she did.  She was booked for day surgery at the IWK and not knowing what time we would get out or how she would react to her first time under general anaesthetic, I told her we would spend the night here.  She was so happy, so excited.  Poor kid - as it turned out, she reacted whether badly to the anaesthetic and spent a very very sick evening here.  In fact, she was still sick in the middle of the night.  And the next morning.  Yeah, that was fun.

She demanded a do-over.  And she got that too eventually, when I finally managed to get her in for psych testing. Both neuropsych testing (which the Blue Jay has tomorrow) and the learning disability testing are pretty well all day affairs.  And because we have to be at the hospital so early in the morning, we come in the night before (witness tonight).  So she's stayed here twice over the years for that and she will actually be back again very soon.  In November, I think.

And yet it's not those times that my mind turns to tonight.  It's the times when both the Blue Jay and Kit Kat were so very little. Or, in the case of Kit Kat, not even here at all.  It's a strange sense of melancholy, it is. 

As an aside, I will tell you this - one very nice, but rather strange thing about being here, is the laziness allowed.  The not having a hundred things you know you should be doing.  Because, you know, you can't.  Not here.   So it's a lot of reading, watch some TV, check out the computer, chat with some parents, smile at some really cute little kids.  It's nice -  a forced mini-vacation.  Sounds strange, I'm sure, but it is what it is.

But tomorrow is another day.  A long day.  And so, for now, I will bid you a fond adieu. Enjoy your evening.  I know I will.

Chillin'

The May Long Weekend. The first official unofficial weekend of summer.

There's nothing quite like it.

It's hard to describe, somehow it always feels a little more special, being the first weekend that beckons of what lies ahead.

So, here I sit, having just finished a bbq, musing about the afternoon I spent with the girls. It's funny how, if you tried to plan this stuff, it wouldn't work. But when you least expect it? Yeah, that's when it happens.

The Kit Kat is still, in many ways, a Tomboy. And yet, at 14, she has also entered the teenage world in way too many ways. But still, a Tomboy.

So I was more than a little surprised when, after I forced her to try on an old pair of her sister's shorts to see if they might fit her, she declared that she liked her legs. Okay. We were up on my room and lay on the bed chatting and laughing for awhile until I finally decided I had to get something done.

At which point she disappeared, reappearing in a different pair of shorts and a very nice black form fitting t-shirt (with a colourful zebra on the front, nice but hard to describe) and hair pulled back in a ponytail. She looks really good with her hair pulled back but she rarely does it. After considering her it for a while, I told her that she had a dancer's body. She seemed to like that.

Then it was jewelry (this is so not a jewelry type of girl), various bracelets which she tried on while I painted her toenails. Well, she asked. Insisted actually. But the Kit Kat and painted toenails, not so much.

But her grad dance (for middle school) will be next month and as much as she despises shopping for clothes, I hear her musing about what she needs to buy for the dance. I know she won't get too dressed up (I will be thrilled if I can get her out of jeans) but still ... when she said she would like a manicure (another first), I suggested that I might just be willing to pay for both a mani and a pedi if she would wear something to the dance that actually showed off her toes ie) not sneakers. Not sure how much luck I will have there but I did plant the seed.

So it's been a nice weekend (so far, almost one-third of it gone). Yeah, I had a long list of things "to do" for this long weekend but I am much more inclined to just chill at the moment and spend some time with my girls, who are growing up much too fast.

Play station, anyone?

'When You Thought I Wasn't Looking'

When you thought I wasn't looking I saw you hang my first painting on the refrigerator and I immediately wanted to paint another one.

When you thought I wasn't looking I saw you feed a stray cat and I learned it was good to be kind to animals.

When you thought I wasn't looking I saw you make my favourite cake for me and I learned that the little things can be the special things in life.

When you thought I wasn't looking I saw you make a meal and take it to friend who was sick and I learned that we all have to help take care of each other.

When you thought I wasn't looking I saw you take care of our house and everyone in it and I learned that we have to take care of what we are given.

When you thought I wasn't looking I saw how you handled your responsibilities, even when you didn't feel good and I learned that I would have to be responsible when I grew up.

When you thought I wasn't looking I saw tears come from your eyes and I learned that sometimes thing hurt but it's all right to cry.

When you thought I wasn't looking I saw that you cared and I wanted to be everything that I could be.

When you thought I wasn't looking I learned most of life's lessons that I needed to know to be a good and productive person when I grew up.

When you thought I wasn't looking I looked at you and wanted to say "Thanks for all the things I saw when you thought I wasn't looking".

~ Author Unknown ~

'She's All Washed Up'

It being the 6th day of March.
And this song playing on the radio this morning.

It is now our theme song for the day.

**Now renamed 'Canadian Dream'.
What? You gotta problem with that?**



Well that and this one.

HAPPY BIRTHDAY KIT KAT!!

In Search of Common Ground

I am currently in the midst of (about half-way through) reading Sarah Palin's book "Going Rogue" at the moment.

I'm reading it because I can't quite get a 'read' (pardon the pun) on Ms. Palin. I don't usually watch Oprah but I did watch the day she interviewed Palin. Interesting enough but I still don't really know what to think of her.

She definitely ain't stupid, I can tell you that much. But she definitely does seem different in some way I can't quite put my finger on. Perhaps it's something in her way of speaking, I'm not sure.

I do know that a lot of people (including most of the media) seem to have ganged up on her and I don't get exactly what that's all about. I think it is true that a lot of people are scared of her but once again I am stuck as to the why.

I posed this question to the nice young guy who works behind the counter at our local Fair Trade coffee shop last week. He never sees me without a book and commented on what I was reading.

Knowing, just knowing, how far to the left of the political spectrum he is, I couldn't help but engage the conversation. I must say that he was more level-headed than many I hear (than again, I think most Canadians are); I think he actually paid her a compliment at one point. But when I mused about people being scared of her, he not only agreed but admitted he was.

When I asked why, he said it was because of her values. Ignoring the amusing point that values are generally considered positive attributes and not something that should create fear, I pointed out that we all disagree with different people on different things but that doesn't usually engender the reaction Palin gets.

Anyway, I am reading the book precisely because I can't get a read on her. The fact that I have made it half-way through speaks for itself in a way - despite the fact that I am an avid reader, I don't can't seem to read non-fiction. Perhaps I get enough "reality" in my work, I don't know, but for the most part I seem unable to force myself through any book that isn't fiction. This one is taking some time but I am making it through. I think maybe because it is told in a rather 'folksy' (for lack of a better word) style, a story told rather like a story, if you will.

And so it occurs to me that if I ran the world, it would be screwed up in totally different ways I would like to make the book mandatory reading for many.

Although my gut is telling me that I will still have that uneasy feeling of being unable to get a 'read' on Ms. Palin after I finish the book, I do appreciate hearing her side of the story on some of the slams things that were brought up during the campaign (such as the alleged book burning, creationism v. evolution in the schools and the infamous 'Trooopergate') and I think it's only fair that people give her a chance to have her voice heard. And then make up their minds.

I know the book (as does the author) tends to engender extreme reactions on both sides (you either love it or you hate it) but for those in the middle and those tempted to quickly write her off if any way possible, might I suggest you read the book first. Then vilify away, if you must.

Reading earlier tonight about Sarah's pregnancy with Trig brought tears to my eyes (an easy enough thing to do on a topic close to my heart). I have posted before about how moved I was by the video Palin made for Special Olympics (which, by the way, I found another copy!) and some of what she speaks of in the video is repeated in the book.

But I was also reminded of a newspaper piece written by Rick Lavoie during the US Presidential election with his thoughts on Governor Palin's promise to be a champion for "special needs families" because she "knows what they are going through".

He shared that response at a Learning Disabilities Conference I attended last year. It too touched my heart. Yeah, yeah, I know; I have a very touchable heart. But you have to give the man credit. He did hit the nail right on the head.

As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign. Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.

With great respect and empathy, I must say, “Sorry, Governor, but you don’t.” You will…someday. But not now. Not yet.

Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays.”

Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” … but that characterization will seem foreign and insensitive to you.

Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.

Someday…all the students in his class will be invited to a birthday party…except Trig.

Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said." (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).

Someday…your adorable daughter who stroked Trig’s hair during the GOP convention will grow into adolescence. Trig will embarrass her in front of her friends and she will tell you, “I hate him! I hate him! I hate him!” (…she will feel guilt-ridden after her rant and will cry herself to sleep that night).

You can read the rest of it here. And might I suggest that you do.

Meanwhile, I will get back to that book. And I will let you know what I think when I finally get through it.

In The Looking Glass

I've recently discovered Jodi Picoult. She's really a very good writer. She always manages to hook me.

First it was My Sister's Keeper, this past summer. After I watched the movie. I picked it up in the bookstore at the airport when we were flying out west.

When I finished that, my sister-in-law handed me Nineteen Minutes.

Monday I started Handle With Care.

275 pages later, I realized I was reading the same story all over again. My Sister's Keeper redux. That's not meant as a criticism. Not at all. I am really enjoying the book.

It's just the realization that once again we have a child with a terrible disease.

A mother who has (and will) fight to the death for her. No matter what the cost. Even to the rest of her family.

The father ... strong, handsome, in one of those 'hero' jobs (in My Sister's Keeper he was a fireman; in Handle with Care, he's a cop), the "good guy" who loves his family dearly, can see the bigger picture but doesn't seem to be able to make his wife see it, who helplessly watches his family fall apart.

And the other sibling who gets lost in the shuffle- in My Sister's Keeper it was a younger brother; in this one, it's an older sister. Perhaps the one who is most victimized by the situation (and yet no one seems to notice - not them, not what's happening to them), they each, in turn, act out - the brother in My Sister's Keeper starts setting fires and the sister in Handle with Care turns to stuffing and purging (bulimia) and cutting herself.

But it's the mother that brought me here.

I recognize that mother. I know her well. I am her.

Perhaps it's just a by-product of having a child with significant special needs. Over time, they change you. Make you a better person in so many ways.

But eventually those strength's which they bring out in you, ones you didn't even know you had, can become too strong. That focus, too focused.

Yeah, you really do know what your child needs. But you become so use to having to fight for it (and get so good at it) that it starts to consume your whole life. To the point that all those other people you also love can no longer compete.

Single-minded determination. It will burn out not just you, but also everybody else in its path.

And yet, where is that magic line? When have you taken it far enough? When have you taken it too far?

The answer, often, is a question of perspective. And Ms. Picoult is very good at writing from various perspectives.

She also has a definite flair for the dramatic and unexpected. I now know that there's a very good chance that she will turn your world upside down by the end of a book, if she so chooses. Leaving you with very unsatisfying endings.

In the vast majority of books, the conflict is resolved by the end of the story. The bad guys are found and captured, the lovers re-unite, the world is saved. Not in a Picoult novel, though. People don't live happily ever after. In fact, there's a very good chance that those characters who manage to survive will most definitely live unhappily ever after.

Her next book is to be about a teenage boy with Asperger's Syndrome. On the autistic spectrum, these individuals show marked deficiencies in social skills, having difficulties with social interactions, communications and transitions. They often have obsessive routines and may be preoccupied with a particular subject of interest. And they have a great deal of difficulty reading body language and very often have difficulty determining proper body space. It's these very characteristics that make the boy at the centre of the book the prime subject in a murder case.

I expect another good read. But, I must confess, I do hope not to find myself portrayed anywhere in this book. Knowing from past experience that it can be and usually is more than a little disconcerting.

You are My Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with sombre telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.

Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have laboured to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbours front doors on Halloween, and we have found ways to help our deaf children from the words, "trick or treat." We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolours, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together we special mothers and our special children, reach for the stars.

By Maureen K. Higgins (borrowed from Daisy's Cafe)

Heartbreaker

Lex brings us a story to remind us all what really matters in life.

Which brings to mind another wonderful family who honours their daughter's memory every day. By helping other children. And who (coincidentally?) are also blessed with Grace in their lives.