If I Had My Druthers ...

A bit of a personal missive this evening (I know - most of them are lately) - some of my readers will know that I have two children with special needs.  Two teenage children, to be exact.  My oldest daughter has a laundry list of labels and diagnoses - mentally challenged, PPD, speech/language disorder ... none of which accurately describe her - and my youngest has a learning disability.

As I walked out of my oldest daughter's IPP meeting today and into the bright sunshine, it struck me that many days it really doesn't seem to matter how much or how well you think you know the law or which government entity is responsible for this or that - creating something meaningful and functional for our children seems nearly an impossibility.  The key words here are, of course, meaningful and functional.

It I had my druthers, Nova Scotia's Canada's education law would be very similar to that in the US.  We would have legislation similar to IDEA (Individuals with Disabilities Education Act) - which, admittedly, would be somewhat difficult given that IDEA is a federal law whereas, in Canada, education is a provincial responsibility - which actually had some teeth in it, which actually gave parents meaningful rights and a process to challenge a school or school board's actions (or inaction). 

Yes, that's what we would have as opposed to the current namby pamby wishy washy excuse we have for legislation - legislation which uses much of the language in IDEA (such as guaranteeing our children an "appropriate education") but lacks both the process and the teeth to back it up.

I have definitely discovered that high school is a whole new ball game when it comes to IPPs.  From everything from the way they are created to the way they are reviewed and implemented, it is, quite simply, different.  And much harder, from a parent's point of view (or at least from my point of view) to meaningfully participate, to offer meaningful input that is actually included in the IPP and to get information as to how well the goals, once they are finally created, are (or are not) being met (and no, I don't mean the pathetic excuse for "reporting" that is passed off as report cards).

Although it took a long time for IDEA (as it exists today) to emerge, it also took a lot of parental involvement and advocacy.  And I can't help but think that's the only thing that is going to move Canada's educational systems for children with special needs forward.

In the meantime, I suppose we will all just keep putting one foot in front of another.  And keep hoping that somehow, through it all, we can manage to actually obtain an appropriate education for our children.

There's only one problem with that, of course.

Hope isn't actually a strategy.

One Flaw in Women *

Women have strengths that amaze men.....
They bear hardships and they carry burdens,
But they hold happiness, love and joy.

They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy
And laugh when they are nervous.

They fight for what they believe in.
They stand up to injustice.
They don't take "no" for an answer
When they believe there is a better solution.

They go without so their family can have.
They go to the doctor with a frightened friend.

They love unconditionally.

They cry when their children excel
And cheer when their friends get awards.
They are happy when they hear about
A birth or a wedding.

Their hearts break when a friend dies.
They grieve at the loss of a family member,
Yet they are strong when they
Think there is no strength left.

They know that a hug and a kiss
Can heal a broken heart.

Women come in all shapes, sizes and colors.

They'll drive, fly, walk, run or e-mail you
To show how much they care about you.

The heart of a woman is what
Makes the world keep turning.

They bring joy, hope and love.
They have compassion and ideas.
They give moral support to their
Family and friends.

Women have vital things to say
And everything to give.

HOWEVER, IF THERE IS ONE FLAW IN WOMEN,
IT IS THAT THEY FORGET THEIR WORTH.

Please pass this along to all your women friends and relatives to remind them just how amazing they are.

H/T to Eileen

* Not to offend the other half of my readership but ... if you can come up with a good one for men, I promise to post it!

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.

Theatre

I watched on the television news yesterday as the issue of the "Ground Zero mosque" (complicated by the Preacher from Hell who up until the last minute had appeared hell-bent on burning multiple copies of the Koran) spilled over into protests on the streets in New York on the anniversary of 9/11.

And it got me thinking.  In particular, it made me wonder, for those that hold the anniversary of 9/11 as something precious (or, for some, even sacred), how well do those sentiments mix with the political theatre we witnessed yesterday?

It seems to me that the anniversary of 9/11 should be a time of remembrance, a time of reflection.  Whatever your feelings on the Ground Zero mosque or Pastor Jones, I just can't see the justification for those issues spilling over into what occurred yesterday. 

I'm not suggesting that either one of the above aren't relevant, important issues - things that need to be discussed, debated and, yes, perhaps even protested.  But I just don't think those issues belonged on New York streets.  Not yesterday.

There were two different "camps" out there protesting so I am not condemning one side over the other.  I think that, in a sense, they both should be ashamed of themselves.  Or, at the very least, they should be seriously reconsidering the appropriateness of the choices they made yesterday. 

Because it was all about "choice' - nobody forced either side out on to the streets.  If you really believe these issues require public protest, then by all means protest - do so on September 1, 2, 3, 4, 5, 6, 7,  8, 9 and 10.   Do so on September 12, 13, 14 and 15 and onward, if you must.  But please have the respect to leave one day out of 365 clear of these type of activities.

Yes, I realize that both issues are all directly linked to 9/11 - some might go so far as to say that are a part of 9/11 or symbolize what 9/11 is all about.  I won't argue that point.

But can we not, for just one day, move the political theatre off of centre stage?  Can we not, just for one day, show the victims of 9/11 and their families the respect and dignity they deserve?  Is that really too much to ask?

The group that plans to build the Grand Zero mosque profess to be about "a platform for multi-faith dialogue", something that will strive to promote "inter-community peace, tolerance and understanding locally in New York City, nationally in America, and globally".  Both they and their supporters might want to consider that loud noisy protests on the very day dedicated to the memory of those who lost their lives on 9/11 might not only be the antithesis of promitng "peace, tolerance and understanding" but could well be seen as very disrespectul of those victimes.

And those on the other side of the issue, who argue so strongly that allowing a mosque to be built so close to Ground Zero is a slap in the face to those victims and their families might want to consier affording those same victims and their families one day of dignity, quiet and remembrance.

To do otherwise is, in my opinion, pretty hypocrical of those on both sides of the issue.

I'm just saying.

Happy Birthday To Me

That's right - today's my birthday!

Thank you.  Thank you very much.

What's that?  Oh, yes, of course.

Ahem. 29.  Again.

Still. Whatever ... I'm 29.  Honest.  Trust me!

All right, that's enough of that.  Time to move on.  Nothing else to see here.

So what did I do on this most ostentatious day of days, you ask.

Well, I'm pleased to report first on what I didn't do.  I didn't work. At all. Not one iota.  Friday is generally the day I go to Halifax to work so I am pleased to say that this week I didn't.

What I did do, well it may not sound like much, but I consider it a rather productive and positive day.  I met this morning with the Executive Director of the early intervention group that had contacted me about a speaking engagement.  So we set up the details for that presentation which will be in November.  And I am pleased to say that I am now booked for my very first paid speaking engagement ... which is kind of cool.

This afernoon I was off to another meeting, this one with my husband in connection with his Continuing Saga.  The meeting was quite positive, I think we might actually be making some progress.  I would could go into the details but ... nah, it's a long, stupid (albeit very stressful) story.  Trust me, you will be happier not having read it.  Suffice to say that the meeting this afternoon was very positive and the woman we met with, Mary, was not only quite nice but it appears that she is already moving some things forward for us.  Things that no one else would could seem to move forward up until now. 

Have you ever noticed that it seem relatively easy for people to be "nice" but it's often quite another thing to find someone who is actually helpful?

This evening it was out to supper with the family and some friends.  Followed by an absolutely decadent dessert.  Courtesy of the house.  Which didn't hurt any at all.

Oh yeah, one more thing - would you believe I "won" a trip to Cancun today?

Yeah, I know, beware the dreaded "Push 1 to hear what you've won" phone call.  But a few years ago I "won" a trip to Florida, admission to Walt Disney World and a cruise to the Bahamas. All online.  It was one of those "listen to our two speils where we try to convince you to buy time shares" deals.  And although it wasn't quite as appealing as it initially sounded, it really wasn't a bad trip. The only problem real with these "prizes" being that they tend not to include airfare.  Which is no slight consideration when you happen to hail from the Great White Up.

Still, I took the plunge and purchased my four person 7 day/6 night stay at a Cacun resort for the low price of $349.00.  And then purchased a second one (a carbon copy of the same deal) for a mere $99.  My original plan was to sell the second one to my brother since I know he has been planning on taking a trip to Mexico anyway.  Although the Kit Kat  pointed out that perhaps I should sell him the first one and keep the $99 one for myself.

Smart kid that.

How Do You Define Disability?

For some reason I simply CANNOT embed the video but you really need to watch this CBS story about Capt. Scott Smiley. 

Not just another inspirational story of a wounded American soldier, it might just make you question your whole perception of what exactly disability is.  And isn't.

So go.  Promise me you will watch the whole thing. Please.

H/T to Lex

With Friends Like That ...

I just spent the better part of the morning with the Blue Jay, weeding out her "Friends" list on Facebook. We went from roughly 400 "friends" down to 173. Which, really, is just as ridiculous as the 400 number when you think about it.

Yeah, yeah, I know. It's Facebook, for goodness sake. Play the game and shoot for 1000. Maybe even 2000.

Which is all fine and good if that's what you're into. And you don't have various challenges.

A couple of the Blue Jay's "friends" (actually, kids from school that she barely knew, if at all) started having some very interesting chats with her this past summer. About boyfriend-girlfriend stuff. And what you should do with your boyfriend. In graphic detail. If you get my drift. Yeah, that's what I said.

We only came to find out about it by chance, when the Blue Jay made a comment to her sister about something she wanted to "do" to her "boyfriend" (I could write a whole post on that particular relationship but suffice to say that it's a very safe relationship for the Blue Jay while still giving her that social status of having a "boyfriend").

So. Yeah.

I mean you need to get this - although at times she is pure teen attitude and her body is that of a 17-year-old, mentally she's about equivalent to a 9-year-old. 

She has no interest in this stuff.  At least not until other people instigate it.  And instigate it they do.  And interested she becomes.  For the simple reason that she has been hearing that this is what everyone else does.  And all she wants is to fit in with everyone else.  To be like them and be accepted.

Leaving us suppose to do what exactly?

She is 17.  She doesn't understand why she can't be like other 17-year-olds.  Allowed to do the things they do and have the freedom they have.  Even though she has absolutely no interest in three-quarters of the things they do.  Let's just say that her real interests are at a much younger level.

And so we do our best to protect her from this foolishness.  To keep her safe while at the same time trying to do do the near polar opposite and foster her independence.

I've heard it said that kids don't come with a manual.  No joke.  But neither do kids with special needs and let me tell you - I could really, really use one right now.

First Day of School

It's the first day back to school for the crew and, alas, I am feeling too sick to appreciate it at the moment.  I was fine until late last night when I started to get a sore throat.  I don't do well with fans or air conditioning blowing directly on me and at first I thought that was the culprit.  But there was no way I was turning that fan off ... I was dying as it was even with it on.

Then I woke up this morning and knew better - unless, of course, I have suddenly become allergic to all the fans of various shapes, sorts and sizes in my house.  In which case I'm thinking I'm in big trouble - they're not calling for a break in this weather until Earl makes it way through here sometime on the weekend. 

I could be concerned about the possibility of a hurricane, I suppose.  Except that I feel to lousy to actually care. Meh, life just isn't fair.

Yeah, yeah, I know.  I'm the first one to ask my kids what in the world ever made them think life was fair when they start that whine. Still, it's my blog and I'll whine if I want to ...