Showing posts with label Parenting. Show all posts
Showing posts with label Parenting. Show all posts

Wednesday, May 8, 2013

D-D-D-D-Done Did

Remember that project I really had to get going on? The one I posted about a year ago? Yeah, that one.

Well, I am pleased to report that it is now, finally
DONE DID. **

Yep, that's right - it only took me one year from the time I first posted (aka 14 months after the Blue Jay actually turned 19) to get this far.

But, hey, in my defence, I now have an actual COURT DATE. For next month.

I know, hard to believe, isn't it?

Although, also in my defence, the delay was not entirely my fault (she proclaims loudly, for all to hear).

One good thing that has come out of the process of applying for guardianship of the Blue Jay, on my own, is that I now definitely have a greater appreciation of the struggles faced by those families who choose to proceed unrepresented in a guardianship application (with the help of my Kit, of course).

Struggles such as having to coordinate affidavits between two different doctors. And, more importantly, having to find some sucker good-hearted lawyer soul willing to swear those (and other) affidavits, pro bono like.

And, not just pro bono, but actually, like, willing to attend at the doctors' offices. Because, believe it or not, doctors do not attend at lawyers' offices. Oh no, lawyers attend at doctors' offices. And never the twain shall meet. Let's just be clear about that.

And hey, who knew? Besides the fun involved in actually figuring all that out, that can, in fact, take just a little bit of time.

But, at any rate, I am very pleased to announce that I have made it this far.

Particularly because, going forward, the matter really is pretty much out of my hands. We have a court date set, you see. Which means the day (only a few weeks hence) will dawn (whether I like it or not) and I will be completely prepared because, really, what choice do I have?

That's right ... it is now officially out of hands.

Which, really, come to think of it, is no doubt a very good thing.

** No, it may not be a DONE deed. 
But I DID, indeed, get to the point where it is out of my hands. 
So there. Take. That.

Tuesday, July 3, 2012

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?

Wednesday, May 2, 2012

Today?

Today's the day. It's here. It. Has. Arrived. Most definitely.

I think.

Yeah, I may have been somewhat ambivalent with the concept (let alone overwhelmed in the part of my life that requires the actual "doing") of applying for guardianship of the Blue Jay.

Don't get me wrong. I know I have to do it.

My own ... ambivalence (and I'm really not sure what that is all about - ambivalence from She Who Preaches the Need to Seriously Consider and Decide How to Manage the Legal Relationship with Your Adult Child?) aside, it needs to be done.

Sooner. Rather than later.

And yet, somehow, She Who Created a Legal Guardianship Kit So Families with Absolutely No Legal Experience, Background or Training At All Can Apply for Guardianship Without Incurring the Cost of a Lawyer has managed NOT to do anything (and let's be clear here, I mean ANYTHING) about it in the past five weeks since the Blue Jay turned 19.

But having one big at-the-last-minute-total-surprise project off my plate (or as far off the plate as I can possibly make it go - after a presentation to the Camp's Board of Directors last evening I refuse to think about it any more right now ... uh uh, nope, you can't make me) and having an entire week before being scheduled to make a presentation (that I am totally unprepared for, by the way) to the Student Services Co-ordinators from around the Province ... I mean, really, what excuse could I possibly have for not starting the paperwork today?

Other than the fact that I desperately need to market my new business more ("more" as in so I have some actual work because I don't have any at the moment) after having worked the last day for my 12+ year client last week? But, hey, let's not get sidetracked here.

Right. Exactly. That's what I thought. No excuse. None.

But first, first I really need a cup of coffee. Then I will check my email again. Because you never know, there might just be something important there. And maybe Facebook, too, because ... you know ... it's Facebook.  'Nuff said.

But then, then I am going to be all over it. Like flies on honey. Like a rug on the floor. Like, like ... wow, I'm tired and those are so bad it's a true blessing for all of us that I can't think of any more.

But you get the point, right?

Cuz I'm going to do this. I am. Honest.

* Okay, sure, it's entirely possible that I could just be valiantly trying to convince myself here. But, then again, it is my blog. And I can cry if I want to. Right?

PS I am seriously considering adding a new label to the blog. How does "Pathetic" sound?

Monday, March 26, 2012

Purple Passages

Monday, March 26, 2012.

Here it is. Yet another Purple Day.

The thought of which, at the moment, leaves me feeling totally exhausted.

Please don't get me wrong - I love Purple Day. My family loves Purple Day. In fact, it is the only one of the few only things we all do together.

But it's been a hell of a ride the past few weeks - flat out with too many things to really mention here (suffice to say, I am working with an amazing business/public speaking coach who is really helping me rework my flagship presentation - but it's a lot of work I am trying to accomplish by the date of my next speaking engagement on March 31st. While, you know, working. And doing everything my often interesting life can entail).

And then, of course, there was is Lex. Which, although that pain will be felt for a good long while, at least I'm thinking (hoping) that the worst of it is over.

But back to Purple Day. For a moment, please.

There were purple things that simply had to be done.

Such as getting everything to our neighbourhood daycare who so graciously agreed to do a Purple Day Bunny Hop (fundraiser) on very short notice. Thanks to yours truly. The short notice part, that is.

And cupcakes. Let us never forget the cupcakes.

Five dozen for the Blue Jay's high school - where Purple Day (complete with the provision of purple cupcakes, for a donation, of course) has become an annual tradition.

Then another three dozen for Purple Day at the Mall. Which, unlike the ones for school (part of Purple Day at the high school involving the students in the Blue Jay's resource room decorating the cupcakes they sell), these particular ones required decorating. So decorate we did.

In between working in Halifax on Friday and returning to Halifax on Saturday for a Circles workshop and before Purple Day at the Mall. On Sunday. Which would usually be done on Saturday, but I am still working on that whole being in two places at one time thing. To date, results have been ... shall we say ... mixed.

And so we spent yesterday afternoon at out Purple Day table in the Mall. Sunday was of course a bit slower than a typical Saturday, but a good time was had by all.

But when the Blue Jay and Kit Kat headed off to the Blue Jay's school this morning with their 5 dozen cupcakes, to meet up with the teachers who had agreed to provide another four or five dozen, I breathed a sigh of relief, rolled over and went back to sleep. Feeling like I deserved it, after all.

So although I am all decked out in my purple finery today and did manage to get to the grocery store to transport the Purple Day Cake I had ordered, special-like, to the little ones at the Daycare to thank them (because, let's face it, all that hopping can take a lot out of a body and it requires a  high dose of sugar to replenish itself), that is about the extent of my energy for this particular Purple Day. And for anything else today, too, I'm sad to admit.

But life goes on.

Indeed it does ... I know that for a fact because Kit Kat turned 16 a couple of weeks ago and the Blue Jay will have lived on this earth a full 19 years, come Thursday at about 3:30 in the morning. Yes, I do believe I remember that.

But 19? Really?? You've gotta be kidding. And speaking of such things ... ummm, I guess that means I better get shopping soon, huh?

Alas, there's more to being a 19-year-old Blue Jay than cake, friends, bowling and gifts. Nope, that would be too easy. You see, it's also the time my darling daughter transitions from the child to the adult system. Meaning it's the time that she is "assessed" to see where she might be placed "fit" in that lovely "continuum of services" offered by the province's Services for Persons With Disabilities program.

So that was interesting, it was.

While I met with our caseworker's supervisor to discuss the issue of how guardianship might affect the Blue Jay's eventual eligibility for the Independent Living Support Program, the Blue Jay, herself, worked through the assessment tool with the worker. They had made it about three-quarters of the way through when I returned to join them. And I must say that I was very, very impressed with the Blue Jay - with her unexpected (at least to me) insight into what she could do on her own and where she needed help. I do believe she might just be growing up. With or without my permission, apparently.

That interview took a lot out of her, though.  After a full day at her one-day-a-week work placement through school and that rather lengthy appointment, she was pretty much (understandably) wiped out for the rest of the day.

And so it goes, I suppose. We move into the next phase of her life, ready or not.

And thus it was, that driving home from that appointment Thursday afternoon, I couldn't help but think ... It's been a wild ride, honey. Hang on for Part II.

Monday, December 19, 2011

'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.

Saturday, September 4, 2010

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.

Wednesday, August 25, 2010

For The Wisdom of Solomon

I read an interesting opinion piece in our provincial newspaper a couple of weeks ago. 

Entitled "Racist Parents, innocent children: What to do?", it referenced a Court of Appeal decision in New Jersey where three young siblings, with given names of Adolph Hitler, JoyceLynn Aryan Nation and Honsztynn Hinler Jeannie (apparently "Honszlynn Hitler" is meant to honour Heinrich Himmler, the Recihsfuhrer of the SS) were removed from their parents, with custody being transferred to the state. 

Is anyone out there actually wondering what got Children's Aid involved in the first place?

Although a family court had previously found insufficient evidence that the parents had abused or neglected their children, the three appeal court judges ruled that the parents had “recklessly created a risk of serious injury to their children by failing to protect the children from harm and failing to acknowledge and treat their disabilities". 

The children's names were not mentioned in the appeal decision and the court relied on other grounds to find the children were in need of protection (the ones noted in the news accounts being that both parents were unemployed and suffered from unspecified physical and psychological disabilities).

And I must say that although we don't have much detail as to the extent of the parents' "disabilities", it does seem rather strange that the state would be granted permanent guardianship solely on those enumerated grounds.  Or, at least not until after extensive services had been put in place in an effort to help the parents remedy their deficits.

The  New Jersey case mirrors a Canadian one where a young child in Manitoba went to school with a massive swastika on her arm and other slogans on her legs, including references to Adolf Hitler and the slogan, “We must secure the existence of our people and a future for white children.”
Photos of the markings were shown in court.

“The meaning of that is that black people don’t belong,” the girl later explained to the social worker.

The woman told court Monday she was stunned by what transpired during an hour-long interview with the girl, who frequently used the N-word to describe blacks and said she believes strongly in what her parents taught her.
The girl also gave a graphic description of how to kill a black person, telling the social worker about using a spiked ball attached to a chain and then “whipping them until they die.”

The worker asked the girl if those ideas “scared her.”

“No, black people just need to die. That’s not scary. This is a white man’s world,” she replied.
Although the case was argued as having "nothing to do with infringing on free speech or expression" but rather “longstanding family dysfunction” (including drug and alcohol abuse, mental illness, neglect, and criminal activity and associations), some, at least, have read the court's finding that the child and her younger brother were at risk of harm from their Nazi-sympathizing parents as proposing that the risk that the child would acquire racist attitudes was also grounds for removing them from their parents.

And the point has been rightfully made that these children were not originally removed from the home the reasons enumerated above; in fact, they were removed from their parents long before these details came out.  No, there's really no other way to spin it other than that they were taken because the children's aid workers didn't appreciate the racist beliefs of the parents.

Saturday, December 26, 2009

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.

Sunday, July 19, 2009

The Beauty of the Games

The beauty of the Special Olympics isn't found in the ceremony and pageantry. It's not in the visiting dignitaries or those waiting to be introduced on the main stage. It's not even in the medals (purty as they are).

No, the beauty of the Games lies in the fact that it's the one place in this world of so-called "normal" that these youths and adults not only get to just be themselves but are celebrated for being themselves. Where, for once, they are not trying to 'fit in' to what everyone else thinks is acceptable, appropriate behaviour. It's the one time a year when they are celebrated for who they are. And celebrate they do.

I will never forget the first time I attended the Games, three years ago. The one thing that struck me so much on that occasion was how every single athlete was roundly cheered through to the finish. How that very last swimmer, who could still be a very long way behind after his fellow athletes had finished the heat, was still cheered just as heartily on to victory as was the first-place finisher. Cheered on to his victory.

And yet it's not just the athletes who flourish in such an environment. Rereading one of my favourite books this past weekend, I came across what struck me as the perfect words to describe why the Special Olympics are so vital, not just for the athletes but also for their families.

In the chapter aptly-titled "Acceptance", Barbara Gillis writes:
We all need people who see us as good and competent parents and who do not blame us for wrong is 'wrong' and difficult about our child. We all need places to go where people look past the fact that our child doesn't talk or doesn't respond to our directions. We need people who admire his physical beauty and his curiosity, or who recognize how clever he is in his mischief. We all need to go where our family is accepted as it is, and delight is taken in us and each of our children. And we all need people who show us the way, leading us by their example to the confidence or pride we have been struggling for. An ounce of this love can offset a pound of criticism and hostility. In its presence we open up like a day lily to the sun. If it isn't there, we have to find it...

The day lily survives the night, closing its bloom, protecting itself until morning, when it again shows its fullness to the sun. We can protect ourselves and exist in the places where people deny our child and us the sun of acceptance, approval or praise. But we and our child must have our sun. We must have people who shine on us and places where we can relax, open and grow.
This past weekend the Blue Jay and our family basked in the warmth of the sun. There are no better words to describe it.

Cross-posted on A Primer on Special Needs and The Law

Monday, May 11, 2009

The Way It Oughtta Be?

So I took this Parenting Style Quiz.

Yeah, I know. Another one.

But I thought it was kind of cool in that my results came back the way I would like to parent. The way I think I should parent. Which, I must admit, far from matches up with the way I sometimes parent.
When it comes to Shaping Their Character You're Specific
Whether you're an earth mother or a PTA president (or both!), you're very concerned with setting specific expectations for your kids' behavior. You do this both by telling them what to do and acting as a role model, and, in general, you expect them to follow your careful guidance. As a parent, you think you should be very actively involved in fostering your children's growth, which includes determining what activities they should engage in – sports, tutoring, music, chores, art, yoga, whatever. When it comes to everything from family meals to manners and morals, you know what's best.

When It Comes To Making The Rules You're A Benevolent Ruler
When it comes to setting rules and expectations with your kids, you're sort of a benevolent dictator – in the nicest way. When you know what's best for them, there's no need to discuss your decisions. But when it's appropriate, you're happy to take a more democratic approach and let your kids have their say. This kind of combination of firmness and fairness means that you can have open discussions with your children while still being able to assert your authority when it matters.

When It Comes to Enforcing Discipline You're Strict
No doubt about it: You're strict! In your opinion, kids need to be told what to do and how to do it. The approach you take to discipline is firm and direct. That's what's best for your kids, since being firm helps them understand who the boss is, and helps them respect and obey the important rules you establish. When your kids step out of line, you make sure there's an appropriate punishment - not that you enjoy punishing them, and you try never to be too harsh (or too lenient, for that matter). Parents who answered like you indicate that sometimes, spanking is an appropriate form of discipline.
So in honour of Mother's Day ... 'fess up, what's your parenting style?

Saturday, May 9, 2009

'The Invisible Mother'

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone (or even on the toilet) and ask to be taken somewhere.

Inside I'm thinking, 'Can't you see I'm busy?'

Obviously, not.

No one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all.

I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a taxi to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied history and the mind that graduated suma cum laude - but now they had disappeared into the peanut butter, never to be seen again. She's going; she's going; she is gone!

One night, a group of us were having dinner, celebrating the return of a friend from
England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in.

I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.'

It was a book on the great cathedrals of Europe.

I wasn't exactly sure why she'd given it to me until I read her inscription: 'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work.

No one can say who built the great cathedrals - we have no record of their names.

These builders gave their whole lives for a work they would never see finished.

They made great sacrifices and expected no credit.

The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place.

It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will be come.'

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.

The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My mom gets up at 4:00 in the morning and bakes homemade pies. Then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'you're gonna love it there.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it
right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Hope this encourages you when the going gets tough as it sometimes does. We never know what our finished products will turn out to be because of our perseverance.

~ Happy Mother's Day ~

Saturday, April 25, 2009

'A Journey of 1000 Miles'

I attended a Learning Disability Conference today.

The speaker, Rick Lavoie, has quite an impressive and extensive resume in the field of special education.

His topicwas The Motivation Breakthrough: 6 Secrets to Turning On the Tuned-Out Child. I suppose I was in good company considering that he has delivered his message to over 500,000 parents and professionals throughout North America. You can read a little more about that (and him) here, if you're so inclined.

But I will say that he was a very good speaker. And, it was in that regard, that I wanted to share something with you.

As an aside though, despite being neither a Republican (thank goodness) nor a Democrat (thank goodness again), I must say that I have, on occasion, been impressed by Sara Palin, particularly when it comes to issues around disability. For example, you might recall this post and video which, if you haven't yet seen the video yet, I would highly recommend it.

But Lavoie told a story today of how he was asked to write a newspaper piece during this past 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 with us his response, which he now has posted on his website, and which I found truly amazing. And I must admit, did occasionally bring tears to me eyes.

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…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).
Go read all of it.

And watch what for some of us comprises our world, our reaities unfold before your very eyes.

Sunday, April 19, 2009

On The Potluck of Life

Potluck for supper tonight, it was.

The girls and I attended the annual Volunteer Appreciation Supper for the Alexander Society for Special Needs. My friend, Kathleen, started the society ten years ago ... ten years, hard to believe.

The Alexander Society provides arts-based educational programs to children and teens with special needs, as well as providing resources for people working with special needs populations, organizing workshops and special guest speakers, producing materials such as videos and workbooks, and promoting the inclusion of people with special needs into their communities.

But it's best known for the two after-school Creative Arts Programs (one for children aged 5 - 11 and one for teens) where each child is paired up one-on-one with a volunteer adult, which is why volunteers are so integral to it all. Each program runs once a week for eight to ten weeks and combines storytelling and creative drama, music, creative movement and dance, and visual arts and crafts.

For each multi-week session, one story is chosen and developed using visuals such as a story board, simple costumes and “sets” or felt board cut-outs. On the first day, the essence of the entire story is told and the first “episode” is detailed, at which time the students are enrolled in dramatizing that episode. The story and drama are permeated with songs and story themes are further developed in movement, music and art.

Each week the previous week's story is retold, a new episode is added, dramatized and then deepened with movement, music and art activities. On the final day, the whole story is retold, highlighting favourite songs and actions. By this time, some of the students will be able to help tell the story.

One of the many things that makes Creative Arts so special is the way the story is told. Kathleen has always found amazing storytellers, who tell the story in their own words, as opposed to reading it. Storytellers with incredible voices that, along with their eye contact, engage and transport the the students, drawing them into the story when their attention wanders. The drama is developed by enrolling the students and their assistants and directing them through the actions. Each week, different people take on different roles.

Movement and dance are used to help the children develop balance, laterality, dominance for right or left handedness, fine and gross motor skills, concentration, motor planning, memory, and much more. Music helps develop auditory awareness, concentration, fine motor skills, language development, sequencing and memory. Art, which can include drawing, painting with water colour, acrylics, and finger paint, clay work, weaving and handiwork related to the story, helps with writing skills and the children's ability to express themselves.

And the children (or should I say, for the teen group, the young adults) absolutely love it. Both my daughters were involved in the playgroup when it first started ten years ago. After a few years, the Kit Kat dropped out, in large part because of how she struggled with group activities at the time. But looking back now, with the benefit of hindsight, I can see how it really was a fun, compelling, learning experience for her at one time. I can also see how she has developed and moved beyond it.

But it has been an absolute God-send for the Blue Jay, as it has for so many other local children with special needs. In the beginning, before we had volunteers for each child, the parents would attend and each of us would work with someone else's child. It was an amazing experience to watch. To see the progress made by each of those children.

To see the Blue Jay, who had never delved into dramatic play, sway around the room like a true princess when the beautiful, patchwork purple gown was placed on her shoulders. To see a child in a wheelchair who seemed to respond very little to anyone else make that effort to strike the chime when the music leader sang that it was turn to play the music. To hear from a parent that a child who had never made shown any response like this in the past would now reach out his hand to take another child's hand at circle time, just as we always did at playgroup.

And the Blue Jay still looks forward to going every week, still proudly brings home and displays any artwork she has done. But what I noticed this evening, what prompted this post, was what I saw when the teens and their helpers went through some of the songs and told us some of the story they were currently doing.

I watched the Blue Jay's face literally light up when she sang. I saw some of the biggest, happiest smiles on her face that I have ever seen. And I watched another teen literally jump and down and giggle with delight as she attempted to share what was coming next.

And once again (as has happened every so often over the years), I sat back and found myself filled with a profound sense of gratitude. If it is challenging to raise a teenager (and who amongst us would posit it is not?), it is exponentially more challenging to raise a challenged teen. One who has the same hormonal and mood swings, the same drive for independence as the typical teen but only half the language skills and half the social skills and impulse control, just for a start. Add in other aspects of any particular disability, like obsessiveness or literally getting "stuck" on a topic/issue/ thought and it's fun, fun, fun ... NOT.

Seeing the Blue Jay so completely and unabashedly happy or perhaps more importantly, so happy just being herself, is a rare gift. And it reminded me once again (which I confess, I sometimes forget) how crucial such programs are for these kids. We spend a lot of time, money and effort trying to teach the Blue Jay how to be more like everyone else, how to fit in, how to develop the skills she will need to succeed survive in the world. Which is why seeing her so accepted and so happy just being herself strikes home so deeply.

It may well take a village to raise a child. But it most definitely takes very special people with the gift of creating very special programs to allow our children to not just grow, but thrive and flourish. And I will always be eternally grateful to those people.

Saturday, April 18, 2009

Stunned

I've often found that following the Google links which have led the occasional passer-by to these, my humble digs, has led to interesting results. That I could discover some interesting, totally unknown stories or blogs.

But what I discovered today has left me totally stunned.

I have long been aware that it is necessary for people with epilepsy to be closely supervised in the water. For example, people with epilepsy can easily drown in the bath water should they take a seizure. And thus, when the time came that the Blue Jay could finally show some independence in her personal care, we taught her to shower and have kept away from baths.

The Blue Jay loves the water. Always has. Never an ounce of fear. So every time she happily ran off to summer camps, I warned the staff that she required one-on-one on the water due to the possibility of a seizure. 'Not a problem', I was always told. Although thinking back on it, something tells me that once she was little older (perhaps 9 or 10) that supposed 'one-on-one' became something closer to the camp leaders just keeping a little closer eye on her than the other kids.

When we were away, camping or at a hotel, the Blue Jay was not allowed to just go down to the pool alone. Initially, either my husband or I would be there, if not swimming, at least sitting beside the pool watching her. As they got older, I have often delegated the job of keeping an eye on the Blue Jay in the water to her younger sister.

And she has become a darn good swimmer, competing yearly (and practicing weekly) in the Special Olympics.

And so, I have done a good job. I thought.

Until today. When I read this.

A 14 year old boy who had had epilepsy from the time he was 7 drowned in a lake on a school outing.
He had always previously been accompanied by his parents when he went swimming. On this occasion he went on an unplanned swim in a lake with 10 or 11 other children and about 15 teachers. He was observed playing happily with the other children, throwing water about. He then disappeared from sight. The teachers did not suspect that he had drowned until the party was about to leave. Divers were called and they found him in about 1.5 m of water. There was a small cut above one eye but no other sign of trauma. His arms were crossed over his chest, as had previously been observed by his parents when he had a tonic seizure. The coroner's verdict was death by drowning secondary to epilepsy.

His parents contacted the British Epilepsy Association and were informed that swimming is good for people with epilepsy and should be encouraged but should be supervised. They asked the question: “What does this mean?”

His parents said, “The supervision should be one-to-one. He should have had someone in water with him. There was no chance for anyone to save him. I think we were blissfully ignorant. I know now he could have had a seizure in the water and I would have been totally unprepared for it. I'm not sure even now that I'd know what to do to resuscitate him. The whole business of epilepsy should be explained properly. You almost need someone to go through it with you.” His parents also commented that children with obvious physical disability tend to be better supervised than those who are able, like their son was.
And so, now I sit here, stunned. With more questions than answers.

The case study explains how during a particular type of seizure, known as a tonic seizure, the muscles of the chest wall contract and much of the air from the lungs may be expelled.
If such a seizure occurs while a person is swimming, the average body density may become higher than the density of the water, causing rapid submersion. When the muscles of the chest wall relax, the person will still be submerged, with the result that water, not air, will enter the respiratory tract and the person will not rise to the surface.
And how a person supervising someone who takes tonic seizures must be aware that the person may sink quickly and may be difficult to rescue because they will then be heavier than water. That the person supervising should be capable of taking the necessary action should a seizure occur, implying that they should be physically strong enough to rescue the swimmer, competent in the water, and properly instructed.

So. Obviously what we have been doing is not good enough. We have been very, very lucky. There, but for the grace of God, indeed.

And yet.

And yet the Blue Jay is a good swimmer. A very good swimmer. A competitive swimmer. And an adolescent who struggles demands her independence. Independence which is, by necessity, much more limited than that of other teenagers her age. The very thought of attempting to take away any of that hard-won and well-earned self-sufficiency is mind-boggling.

But what good is independence if you're not alive to enjoy it, you ask?

Good question. Very good question.

Saturday, March 14, 2009

The Last Day of the Rest of Your Life

Can anything be worse than the pain of losing a child?

Personally, I feel like I know a bit about grief and mourning lately. But I can't even imagine, can't even begin to fathom, the pain of losing a child. It's beyond me.

I know of parents who have survived that kind of loss. Who have, in fact, not just survived (which I am afraid might well be beyond my capabilities) but even thrived, managing to transform that tragedy into something amazingly beautiful. Something that helps other children and their families. I am honoured and humbled to count such people amongst my friends.

But imagine not just losing your child. Not just. Like that could not possibly be hard enough. Imagine being accused of killing your child. Imagine being convicted and sentenced for your child's death. Imagine spending the past 14 years in prison.

For killing your child. Incarcerated for 14 years. As you mourn the loss of your child's life. And the loss of your own. Because you know what no one else seems to recognize. That you, too, are an innocent victim. That you could never, you would never, you did not harm your child.

That, you, yourself, are the innocent victim of someone else. The pediatric pathologist from hell.
On Thursday, 14 years after being convicted of killing her two-year-old son, Marquardt was granted bail.

Though the courts haven’t yet decided if they’ll hear her appeal, Marquardt was beaming after being released.

"Today I finally have my day," Marquardt said outside the Ontario Court of Appeal, struggling to catch her breath through her tears. "This is my day. I’m out. I made it."

She was the last known parent who remained behind bars based on the testimony of Dr. Charles Smith. Marquardt was convicted of second-degree murder in the death of her son Kenneth and was handed a life sentence in 1995.

She said she found the boy tangled in his bedsheets, but Smith said he was mothered or strangled.

Marquardt’s lawyer James Lockyer said not only did she not kill her son, but no crime was ever committed. Kenneth had seven documented trips to hospital for seizures, Lockyer said.

Smith’s findings have since been rejected by six forensic experts, including one who said the epileptic boy could have died from a seizure.

"Pathology can no longer determine the cause of Kenneth’s death," Lockyer said outside court.

"There’s every reason to believe that he died as a result of seizures that he’d suffered from all his life."
SUDEP, or Sudden Unexplained Death in Epilepsy, is not only a tragedy, but also, exactly what it says.

The sudden. Unexplained. Death. Of a person with epilepsy. Often in their sleep. Uusally without any evidence of a seizure having occurred. But then again, if the person was asleep (and alone), who would know for sure whether or not there had been a seizure?

It's not something that's talked about a whole lot. Not information that many parents of children who experience seizures are made privy to. 'No need to upset them. To scare them. About, you know, something that will never likely happen', the thinking goes.

Not that common, perhaps. But SUDEP does account for 10% of all epilepsy-related deaths. Admittedly, 85% of these fatalities occur between the ages of 20-50 years. Still, the incidence of SUDEP stands at approximately 1 in 1000 people with epilepsy per year which is at least 10 times of the sudden death rate found in the general population. Which means that if you have a diagnosis of epilepsy, you are TEN TIMES more likely to have "Sudden Death".

Yeah. That's what I said.

Perhaps that's what happened to Tammy Marquardt's little boy. Perhaps it was something else. But either way, it appears that there was no credible evidence that his mother was at fault.

I can only wish her well, hope that her legal troubles are soon over and offer her my deepest sympathies, both for the loss of her child and for the past 14 years. And struggle with the realization that yes, there is something worse than losing your child. That would be losing your child and then being accused of and convicted for his murder.

And as to the other tragedies in this story, the life of a two-year-old little boy snuffed out and the higher risk of death for persons with epilepsy ... I can only offer this.

Thursday, March 26th is Purple Day.

Which I will be blogging more about soon. But as a recent slogan I've seen says so well ...

"A cure may be found someday.
But someone needs your help today".


Friday, March 6, 2009

I Must Have Blinked ...

It's hard to believe that my baby, yes, my baby, is now officially 13.

That's right ... the big One Three! A teenager, of all things!

I mean, I'm well aware that she's been thinking that she was a teenager for the past two years. But now it be official. Lord help us all.

Happy Birthday, Kit Kat! We love you.
* You low down, rotten half child/half woman mystical creature of mine.*

* Said with a great deal of love, of course.

Friday, February 6, 2009

Justice At Last ~ Remix

It was one week ago today that I wrote about my horror on hearing of Penny Bourdreau's confession.

One week ago today that I found that I could only barely ask myself how a mother could possibly do that to her own child. And noted that if I was suppose to be feeling some sort of pity or compassion for this woman, was suppose to consider that there must have been horror in her background or some uncontrollable mental illness that caused her to do what she did, I was unable.

A commentor wondered why I would even care if there was some horror in the mother's past and questioned whether I would ask the same question if the boyfriend had killed Karissa. They went on to note that "when men kill they are demonized, when women kill they are analyzed".

So. First let me restate that what I said was that I couldn't even ask myself such questions, that I couldn't get past what this so-called mother had done to her child to even care about any supposed "why".

But, in a sense, I do think Anonymous made a valid point. As Tam pointed out, also in comments, "it is always more shocking when a mother kills a child". I might extend that sentiment to "when a parent kills a child" and yet, yes, I suppose in some way, it does seem even more horrendous when it is the mother.

Perhaps it's because it's beyond what we can fathom; that as mothers, we quite simply can not imagine ever doing such harm to our children - children we carried in my own bodies - therefore, there must be some reason for it, no matter how far we, as a society, have to stretch to find one. This despite the fact that the argument could be made that anybody who intentionally kills any child must be operating with some serious mental health difficulties.

But speaking of "the boyfriend", I caught most of the televised interview with Vernon McCumber on CTV earlier this week. And was admittedly surprised to find him coming across as very sincere and genuine. How many "boyfriends" do you know of in similar situations who have come forward to the speak to the press? Although there may well be some, this is the first situation I am aware of where this happened.

The first news article I read concerning Boudreau's guilty plea referred MacCumber having "no way of knowing Boudreau would take Karissa's life when he told her shortly before the murder that Boudreau had to choose between keeping Karissa or him". I also heard and read different takes from various news services, everything from a statement that McCumber issued "an ultimatum" to Boudreau to his having commented that their place was cramped since Karissa had moved in. Quite a big difference from a comment that the residence was cramped to the issuance of an ultimatum, implying that it's either me or the kid.

On the CTV interview McCumber set out yet a different version, that Karissa and her mother were fighting so much that he told Penny that this wasn't constructive, they had to get some counseling. This, incidentally, is in agreement with the original news story that broke when Karissa first went missing.

As I wrote at the time that Karissa's body was first found:
On Sunday, January 27, 2008, 12 year old Karissa Paige Boudreau went for a drive with her mother. Mother and daughter weren't getting along so well (no real surprises there as any parent of a daughter that age will tell you) and apparently mom was applying some of that parenting advice that talking in the car, when you don't have to actually "face each other", sometimes works better. Eventually they stop at a local grocery store and mom goes in while Karissa waits in the car. When she returns about 15 minutes later, Karissa is gone.
MacCumber said that although he had some suspicions, he didn't know what Penny had done until she confessed to the police. That also dovetails, in some ways, with the Agreed Statement of Facts entered into court on the guilty plea wherein Penny stated that she drove Karissa to a Sobey's parking lot, "where she phoned her boyfriend to say Karissa had gone missing".

He spoke of loving Karissa, of being in agony over what had happened. Of being wracked with guilt and regret since finding out the truth. Of realizing that if he "had just insisted to go, she would have been okay".

Apparently MacCumber gave a similar interview to the Chronicle Herald, shortly after which paramedics and police were called to a north-end Halifax apartment building where a man who was thought to be Vernon MacCumber was threatening to commit suicide.

Look, I don't know the truth here. Quite frankly, probably none of us ever really will.

All I can say is this:
  • That in the televised interview, MacCumber did seem surprisingly remorseful and sincere.

  • That nothing will ever bring back Karissa.

  • That it would be just fine by me if Penny Boudreau were to rot in hell.

  • And that it seems highly unlikely that the police will be able to use their "standard" mob sting when they suspect parental killers as much as they use to given that they've now told the whole world how it works.

Friday, January 30, 2009

Justice At Last?

While it may bring some sense of closure and justice to many of the followers of this story, I'm not sure it can do much for 12 year old Karissa Boudreau.
"Mommy, don't," were the last words Karissa Boudreau spoke as her mother strangled her to death in the woods outside of Hebbville, N.S.
Her mother, Penny Boudreau, pled guilty to first degree murder in her child's death. As I read these words, my stomach clenches and turns. How can it not?

Tensions between the mother and daughter had ran high ever since Karissa had moved father's house inShelburne County in November, 2007.

MacCumber, according to the statement of facts, had told Boudreau that living in their apartment felt cramped with her daughter around.

Boudreau then decided to kill her daughter, court heard.

She drove her daughter to a Sobey's parking lot, where she phoned her boyfriend to say Karissa had gone missing.

Boudreau then drove to nearby Hebbville, where she chased her daughter of the red Dodge Neon, forced her to the ground, and choked her with a piece of twine.

Court heard she could feel her daughter struggling beneath her.

With her daughter's body slumped over in the front seat of her car, Boudreau drove to a Tim Horton's and threw out the twine in a coffee cup. She then drove to the LeHave River and disposed of Karissa's body, court heard.

At Lex's, the questions if often asked and re-asked," Where do we find such men?", after reading of the heroic actions of so many in the military. People who respond, in the heat of combat, to protect their comrades, often at the risk (or even loss) of their own lives.

Last February, I asked for people to show some compassion for a woman whose child had just died and in honour of Karissa and her family, not to immediately accept and repeat the horrific rumours which swirled around her.

Today my mind can only barely form the questions, "How could a mother possibly do this to her own child?", "How do such people manage to live with themselves, to even allow themselves to draw their next breath?", "Where, indeed, do we find such scum who mascarade as human?'.

Perhaps I am suppose to feel some sort of pity or compassion for this so-called mother. To grieve for Karissa while thinking that there must have been horror in Penny Boudreau's background or some uncontrollable mental illness that caused her to do what she did. Perhaps there was. But at this moment I can pull up no emotion for this woman other than repulsion, disgust and horror.

My youngest daughter is 12 years old. I would, without a second thought, give my life for her. As I would for her older sister. As would their father. As difficult as life can be, as much as having two teenagers in your home can, at times, cause you to wonder if one of these days they are going to push you over the edge ... I could never even imagine actually harming either one of them.

I'm sorry, Karissa. So, so sorry for so many things.

One of them being for the fact that you never actually had a mother. That woman, who gave birth to you and partially raised you, who I am sure you loved as a child loves their mother. That woman. Was. Not. A. Mother.

Wednesday, December 17, 2008

Wednesday, October 22, 2008

Mothers and Daughters

Mothers and daughters ...
And daughters and mothers.

Two of the people I love the most in my life. And yet two of the biggest stressors in my life. Hands down. Do they even know? Do they have a clue?

Well, my mother certainly doesn't realize it. Rather ironic that, considering that she was the one always advocating that I must make my life less stressful. Do less.

But my daughter?
Does she ever even think about it? Or is she simply too wrapped up in the drama which is her life?

I can honestly say that for years, she has begged me to get her help at school. After a constant struggle, this year, finally, I am making progress. And she .... she fights it. Tooth. And. Nail.

Mothers and daughters. And daughters and mothers.

Lord help us all.