life with a severely disabled child

Last Words

2012-01-07T07:39:00.005-05:00

Good Bye

2011-12-28T09:13:00.004-05:00

2011-12-26T07:15:00.006-05:00

In a time long ago (a couple of days) and a blog faraway (ahem), a blogger took a particular physical therapist to task for not recording a visit to said blogger's child and for then making a dismissive remark about said documenting of the visit. The forthcoming comments on the blog came as a shock to me, as a few took said blogger to task for taking said PT to task.

Said blogger, in a subsequent post, took the commentors to task...and was yet again...ummm...taken to task by more commentors.

Of course, I'm with the blogger and believe the PT was out of line for a number of reasons but that isn't so much what this is about. One comment in particular frustrated me. Quite simply, it stated that the incident should just be waved off as a simple mistake. After all it was the holidays...let it go.

!!!!!

Ah yes, the holidays...those sacred times of year when families and friends get together for libation, turkey killing, or various other nefarious group like activities, when stores close for maybe 24 hours...and when those of us with disabled kids lose whatever help we have for extended periods.

FYI ladies and gentlemen, there are no vacations in the land of disability. This is not a complaint...it's just a fact. Only those who truly don't get it continue to live under the delusion that there are: hospitals, for instance. I remember all too well the skeleton crews that staffed the floors of our hospital on weekends those many years ago, when Sophie would, invariably, crash. And that was just the weekends...forget about holidays.

Yes...forget about holidays...completely. They do not exist. So, I get that many of you out there who do have help to begin with, are doing without right now and you are doing all the usual things you do plus everything else...and likely not going to work...until the help returns from their respective time off/vacations. I, for one, am enjoying hanging around the house in my sweat-pants and t-shirt (because, lord knows, I dress like a friggin' model all the rest of the time).

But the other thing that bugged me about the holiday comment was that, once again, somehow, our kids' needs are to be set aside for the ease and comfort of others. Does incompetence take holidays? Obviously not. To dismiss hauling someone out on the carpet for their unprofessional behaviour because of some random celebratory time period just reinforces the general idea that most people have about our kids...they're 'tards...they don't know the goddam difference anyway.

Unacceptable.

So, to those of you who think one blogger was too heavy handed with the PT...I repeat said blogger's viewpoint: you don't get it...not during the holidays, likely not ever.

Oh Tannenbaum

2011-12-24T08:35:00.003-05:00

merry christmas

Holiday Spirit

2011-12-23T06:41:00.005-05:00

Free Spirit
by Random Surprise
David Elias

Sophie's Christmas gift to me, via disability.
(and a certain amount of lack of sleep...;) )

"I believe there is an important distinction to be made between religion and spirituality. Religion I take to be concerned with belief in the claims to salvation of one faith tradition or another--an aspect of which is acceptance of some form of metaphysical or philosophical reality, including perhaps an idea of heaven or hell. Connected with this are religious teachings or dogma, ritual, prayers and so on. Spirituality I take to be concerned with those qualities of the human spirit--such as love and compassion, patience, tolerance, forgiveness, contentment, a sense of responsibility, a sense of harmony, which bring happiness to both self and others. While ritual and prayer, along with questions of nirvana and salvation are directly connected with religious faith, these inner qualities need not be, however. There is thus no reason why the individual should not develop them, even to a high degree, without recourse to any religious or metaphysical belief system. This is why I sometimes say religion is something we can perhaps do without. What we cannot do without are these basic spiritual qualities."

--from The Pocket Dalai Lama by the Dalai Lama, compiled and edited by Mary Craig

Merry Christmas Daddy-o

2011-12-21T14:27:00.005-05:00

Always have to put something up in memory of my awesome Dad every year. Some of his more interesting words of wisdom...

About brutal truth and honesty: People may not like you, but they'll respect you.
Rules are for people who don't know any better.
Bored?? How could anyone be bored? Just look around you.
A contract has to benefit both parties otherwise it's useless.

And my absolute favourite...
Well, actually, the best form of government is a benevolent dictatorship.

Hee hee hee! Love ya Dad.

His favourite carol below.

The Xmas Party

2011-12-17T11:11:00.002-05:00

Well, it's not for lack of trying, you know. I am working toward both Sophie and I getting more social interaction in our lives. For me, that involves actually finding other human beings to talk to...well, actually, I can find the humans, just have trouble with the talking bit. Not so hot at the small talk...really, really awkward...

But Sophie is another thing entirely. She LOVES people, like I do, but she freaks out when she sees them, almost to the point of giving herself a seizure. Kind of a party pooping sort of thing, a seizure.

So...I have been taking her out and about a bit at a time. We are always with a caregiver. At first, we just drove somewhere and back. Then, I would go in a store and she would stay in the car. Then, we went into the store...very particular stores...small, not too full of echoes, lots to see. Our local green grocer is ideal. She was really doing well with all of that. The last few hospitalizations have created some interruptions, as has my few days of work here and there (the nurses are not allowed to take the client off premises, but my homeschool person is), but we are getting on with the "desensitization" program.

In the end, I'm not entirely certain any of it will work. To a certain degree, Sophie will always have over sensitivities to stimulus. It's part of her brain damage, but, I have to keep trying, for her sake.

Anyway...

There was a little gathering of the residents of the building last night in the foyer. I was hell-bent on going, if only to see if there was anyone under 80 actually living here...and even then, I thought I could pick up some grand-parent figures for Sophie and great old folks stories for me. I told Sophie what we were going to do and set her up in her chair and off we went, snack in hand. I was hoping the snack would help her be calm.

So, in the elevator we go, down...door opens and VOILA (or WALLAH for Elizabeth)...

It's like a geriatric festival...walkers, grey/blue hairs and all!! We are immediately the centre of attention...and I hear whispering...Sophie...some know her name already....and then the reaction.

When it comes to old folks, there are generally two distinct reactions to Sophie: one group approaches her and the others avoid her like the plague. This is what happens without fail. There is never an in between. So, I met one lovely woman...Leslie...and of course Mike (this is private joke that some of you know) who attempts to ply me with booze spiked egg nog.

And then there is poor Sophie. She is immediately squealing, half in delight and half in horror at what is likely some serious discomfort in her spastic body, taught with tension. She looks like she's smiling, but I can see in her eyes the real pain and the frustration. Those who have gathered around think she is happy; I know better. This is going to be an epic fail and I know it and we leave in about 6 minutes...but...I tried. Sophie tried. And that's all we can do for now.

It is genuinely sad that the poor kid cannot calm herself enough to enjoy the social experiences she so desires. I will not give up, however...we will keep going and try for smaller venues. I want her to have a good life and being surrounded by other human beings is part of that...for both of us.

Coffee Karma

2011-12-15T06:26:00.005-05:00

I find myself sipping my homemade double shot espresso mocha some time before 5AM. The child has had considerable difficulty with sleep of late. I have put it down to a growth spurt. She wakes up several times in the night, and at some point for hours...not agitated...just awake. And I honour that right now.

At this point the peaceful strains of harp and guitar music that I play to soothe her have ended. It's still dark outside and a wild wind blows on the little chimes on my balcony: a remnant from the previous owners. I like the sound of the wind and the occasional tinkling chimes.

This is a Tassimo free zone. I find that the whole pre-made supposedly perfect cup of espresso or the like promised by this machine to be representative of everything wrong with society: the end being the point of everything, with no respect for or appreciation of the process. It is also coercive, the perfect cup being given a corporate definition. Again...no respect for individuality or nuance.

Making good coffee is an art and heavily sensual, the preparation of the beans, waiting for the machine to heat, texturing the milk, all akin to foreplay leading to the first sip...perfection and satisfaction.

North Americans are obsessed with coffee of every sort, marginal in quality or otherwise; and unlike in Europe or South America where coffee is appreciated for itself, we here hold tight to it as a sign of respite in a world gone mad. Whether upscale or akin to comestible gasoline, our cups of coffee hold promises of peace, of the "pause" in the ever-so-apt French expression "pause-café". "Bring back the break"...McDonald's newest advert campaign.

After many tumultuous nights, hospital stays and ongoing personal dilemmas, my coffee is as valuable to me as gold. And I imagine, if there was such a place, that heaven (were it to be of our own creation), would be for me an upscale coffee lounge. There would be a perpetual scent of brewing coffee mixed with chocolate, distant sounds of espresso machines and clinking mugs. Comfy couches around low tables, a fire place and a continuous rotation of friends, family and good men sitting across from me. I would be engaged in an eternal round of conversation and delicate sensory stimulus...occasional celebratory moments spiking my coffee with fine Irish whiskey or Bailey's.

There are days when it is easy to imagine allowing oneself to slip slowly and irrevocably into this coffee induced coma, enveloped forever by warmth and peace.

Very Merry Canadian Stereotype

2011-12-12T08:55:00.001-05:00

Fruitcake confessions

2011-12-10T10:25:00.002-05:00

'Tis the season...so they say. Fruitcake season. Oh yes. AND...I got one in the mail the other day. It came all the way from England. All the way....

I got it delivered to my door...my apartment door...on a Sunday, of all things! I thought it was God itself who sent it to me. Well, the package anyway. I didn't know it was a fruitcake, until I opened it...and then realized the package wasn't exactly addressed to me.

Ahem.

Yes, well, it was addressed to the former apartment dwellers, a lovely old couple whom I met actually, when I first visited the place. They sold me their fabulous washer/dryer combo for half price. They were really nice and funny...quirky like old folks can be...and decidedly British.

It was for them that the fruitcake was intended. But I got it, you see. Me. Sort of into food. You know, ME.

I dutifully took it down to the super, on that Sunday, hoping to get an address to re-direct the thing, or even maybe drop it off at their place. They were so nice a couple, actually, that I wouldn't mind having to do that, and maybe chat for a bit, you know? In any case, the super could not, actually give me an address but figured he would call the property management company during the next week.

He forgot.

A fruitcake weighed heavily on my table in my apartment.

With my life being the way it is these days and the many strange and somewhat stressful things that I have to deal with fairly daily, I have hit on a new philosophy to get me through the night; it's "fuck it". Sometimes it's "fuck it all".

So, yeah...fuck it...I am eating the fruitcake, the "not actually mine, all the way from England intended for the really nice old couple" fruitcake. It's really good...homemade...and I am not really fond of fruitcake. Man...I'm like the "fuck it" Grinch now. Bet I would eat the fruitcake from the Who's Christmas feast if it were delivered to my door accidentally.

Bet I would.

Wonder what else they'll be sending to my door in the next few weeks....

A Bit of Holiday Cheer

2011-12-06T10:42:00.003-05:00

I'm still here folks...just somewhat overwhelmed with life. Just a few little fun things for now.

The foyer of my building

My door...

My beautiful gal

Alrighty then...

2011-12-03T07:10:00.008-05:00

Yeppir...we had us some fun ladies and gentlemen!!

Thanks to Single Dad for his fab guest post! And yes...of course he had my "permission" to hijack my blog and fool around. Always fun when a man fools around with a woman's blog. **cough**

ANYWAY....

Sophie, after having had a perfectly fine Wednesday, woke up to a perfectly awful Thursday. She was nauseaus, fussy, lethargic...and the swelling started to appear around her eyes again. Shit. Well, I got everything ready and events transpired in my favour which allowed me to take her, finally, via ambulance to the hospital...rather than drive her by van...and THAT was awesome, smooth, comfy, almost...and efficient. I had my "sheet" ready, handed it to the very handsome EMS guys (what IS it with EMS guys? Yikes...). The one guy filled out the forms en route, phoned it all in to the usually hateful triage nurse, and we sailed into a cot in emerg right away. Handed the sheet to the bedside nurse...zippity zip...3PM...called up to the neuro floor on my cell, kid's father talked to the neurosurgeon's nurse clinician, she was down within 20 minutes, the neurosurgeon herself within 60, and bang!!! CT scan, shunt series x-ray, then surgery by 6PM. The neurosurgeon couldn't even stand to wait for a porter to "drive" us to the OR. She did it herself. Hates to wait that one. She wasn't our usual surgeon...she is "the other one"...awesome, Swiss born and trained, with a nice French accent (yes, they also speak FRENCH in Switzerland lovelies). She is all business and told us it was time for a full shunt replacement.

Sophie had been too often to emerg. lately for shunt issues. It appeared that the thing had begun "plaquing". Little bits and pieces of unidentified gunk were mucking up the works. Let's face it, it's a machine in a physical body...the two often do not get along. But, we had a fairly good 12 years with it. Nonetheless, a full shunt revision is a big deal, carries with it some risks...but Sophie was in the best of hands. We are lucky to have two exceptional pediatric neurosurgeons in this town.

Below, you get a sense of the plumbing involved.

All of that was removed and replaced with new, including the tubing that is directly in the ventricle in the brain. One small piece of tubing was too stuck in her abdominal area to pull out, so it was left behind (they do that...leave it there). So, with all that tubing just pulled out...ewwwwww!...you can imagine Sophie is quite sore. She had been in surgery only a month prior too. Kid has had the crap beat out of her.

But you know, she was out of surgery by 7:30 PM, and we were home by 6PM the next day!! Hurray!!! Home is always safer, cleaner and the food better...and safer and cleaner!! Sophie is doing well today...lots of naps but she is eating and drinking well. She is one strong little gal that one.

But what a rough road. I spent some time in the hospital "sanctuary", which is beautiful and peaceful. I had my little cry at imagining my poor gal having to endure yet another surgery and all the pain that accompanies it. I love that child so much...she is amazing to behold. Below is a photo (hers and Sophie's hands) and prayer that Sophie's lovely home school caregiver and friend put together...

Every prayer, every positive thought, every intention towards faith truly brings about miracles

Keep it humble, keep it simple and look for the undeniable evidence of something greater, more powerful than anything we could ever aspire to be as simple humans.
Pamela D.

"I don't need to worry about identity theft because no one wants to be me." ~Jay London

2011-12-01T20:28:00.002-05:00

Don't you just love bloggers who use quotes as titles? They are by far the superior bloggers ... and you know, that magnificent Single Dad blogger guy ... well he is something special ... as a matter of fact ...

He has hijacked this blog!

Yes, Single Dad here. I am just breaking into Claire's blog for an update to her readers, and to tell you how great my blog is ... but I digress.

As you know, Claire's Sophie has had some issues with her shunt lately. If either end gets clogged or moves, she will not drain properly and all sorts of not good things happen.

Today Claire took Sophie to the hospital (via ambulance for the first time - a good choice as she will tell you) and the doctors determined Sophie needed surgery right away for a shunt issue. She just got out of surgery, which apparently went well, and has a totally new shunt and associated stuff.

At the moment, things are looking good, Claire may or may not be able to blog for a day or two as she hangs out at the hospital ... and we all know the joys of that! Personally I enjoy the food, but have yet to find the bar ...

So, while waiting for her return, let's see, where oh where can you go for interesting reading ... ?

Keep Claire and Sophie in your thoughts and prayers, but all is looking good.

In dubious honour of Single Dad and Pearlsky

2011-12-01T06:44:00.002-05:00

So sorry...just had to Single Dad.

HEY RACHEL!! and some other housekeeping.

2011-11-28T22:10:00.006-05:00

Well...that depends on...
Okay, I just can't do it. Hee hee hee.

Just a few little details to attend to.

First of all, Rachel!! You won a book set that I had in the giveaway about a week ago. I need to know which Rachel you are! I know more than one...please send me your address! Thanks!!

Next: I was recently contacted by one Nathan Charlan with a request to repost one of my older posts on his special needs video/blog site. Cool! Didn't know the place existed! Now I do! You should know about it too. Go to Exceptional Family TV for "Weekly episodes and videos for and about YOU – The Exceptional Family".

Time to go visit Bill Peace again at "Bad Cripple", Assisted Suicide: Never Enough. Think twice, folks, on supporting legislation for making physician assisted suicide legal. It's just too creepy.

Life over here? Not too bad. Some interesting challenges. Sophie has just come down with some sort of stomach bug so I am very careful with what she's getting in her tummy. So far, only one very small episode of emesis!! That's great, 'cause that means we stay at home. And that's the plan.

And I am slowly but surely becoming a techy genius because not only have I been able to fix a few computer related glitches all by my little 'ol self recently, I also set up a new modem, wireless link and printer connection (to the new wireless)...all by myself...with the help of a set-up DVD for dummies, **cough**...and never once (okay, once, but it was a while back, okay!?) asked our resident generous-with-his-time computer geek buddy...who shall remain nameless...but whom we all know and have on our speed chats. I know...I am the man! or the woman! Yessssss!

Alright...get on with your lives citizens, as we slide slowly down that slippery slope toward the commercial bacchanal that is Christmas...but I love it. Got some lights on the balcony that I will turn on precisely on Dec. 1. Yay!

Life force

2011-11-26T06:43:00.006-05:00

Someone hit me on Wednesday. Outside. A tiny hand, fuelled by frustration at my lack of compliance with a particular command proclaimed in full toddler jibberish, struck out and I was soundly punished, right in the knee. The other teachers reacted in mock horror. The child was told what a terrible act she had just perpetrated and she was duly humbled.

I stared down at a not-quite-two year old blonde head, bowed in shame before me. I was desperately trying not to laugh. Truth is, I always liked the spunky ones. I am fond of little girls who storm through the days, bold and un-fettered by social norms and stigmas, the ones who have their daddies and grand-daddies wrapped around their little fingers, whose mothers' shake their heads at, and throw up their hands.

I think that, in a time long ago and a land far away, I was a little girl like that....or at least I wanted to be.

For some reason, my work days at the Montessori school have landed me almost without fail in the toddler room. I was not accustomed to toddlers. As a matter of fact, I was sure I wasn't even really fond of them, preferring the more capable, and somewhat less mucusy, almost three and four year olds.

But these tiny little guys and gals are growing on me, not unlike the veritable banquet of germs that they spread around so unwittingly. Change happens fast and furious at this age, and a toddler that comes in wild and wordless, in no time is thrilling you with three word sentences and a magical toddler poise.

At some point, they are all napping and I survey the room filled with the sounds of babies breathing, some rustling restlessly in their cots, others, bums in the air, deeply asleep: the explosion of life force momentarily set to pause.

And I love them all intensely and I think of my daughter. And I consider the sort of life force that seems to sputter and jerk through her challenged brain and physique and I am equally awed. It is no small feat to choose living against such odds, to have to squeeze and push and eke out some form of expression every minute of every day, mostly misunderstood.

Though less capable in many ways than the toddlers in my care, she is indeed one of the spunky ones. She has my deepest love, of course, but even more my intense and abiding respect.

Montessori Magic

2011-11-23T17:13:00.003-05:00

Written on a teacher's water bottle:

Children are life's orgasm.

Draw Winners!!!

2011-11-22T14:29:00.003-05:00

Alright...gotta get this out before the BIG AMERICAN THANKSGIVING!

Sophie is a bit under the weather...she seems to be fighting off a cold that was hanging around her father, her neurosurgeon, the universe at large...and she picked the following TWO folks to each win a set of TWO books:

Chaney M. and Rachel

Hurray!!!

You two...please contact me and send me your addresses which I will guard with my life, natch!
crwandsrw@gmail.com

Thanks all for playing and, for those of you celebrating it...Happy Thanksgiving!

Another Awesome Giveaway!

2011-11-11T23:36:00.007-05:00

Yeppir folks! It's time for another giveaway! This time, up for grabs is TWO sets of two books...two very, different books.

#1...Wit and Wisdom from the Parents of Special Needs Kids. This one is a compilation of real life stories edited by our own Autism Army Mom, Lynn Hudoba. This is a great book for when you have time for a quickie uplifting or sobering...or hilarious...story or two. Of course, my Sophie is in there somewhere, as is Elizabeth Aquino's Sophie...Yay! I mean, this is awesome stuff.

#2...No Ordinary Boy: The Life and Death of Owen Turney. This book is written by my Canadian friend Jennifer Johannesen from Yes/No Big Decisions. Jennifer's book is not a light read, but it's impossible to put down. And it never bogs down with either drama, sentimentality, or gloominess. It's raw, true to life stuff about the many aspects of life with a severely disabled child...from pre-natal diagnosis to Owen's unexpected death, with exceptional insight into medical systems.

So...it's a TWOFERONE giveaway! Comment...I will put your name in a "hat" and Sophie will do the honours.

And, of course, you can always buy these awesome books...click on the links on my sidebar.

Go Go Go!!!

P.S. I wil mail internationally!

On the inside looking out

2011-11-09T06:50:00.001-05:00

Lack of autonmy and unreciprocated dependence on others bring debasement of status in American culture--and in may other cultures. Most societies socialize children to share and reciprocate, and also to become autonomous to some degree. Overdependency and nonreciprocity are considered childish traits, and adults who have them--even if it's not their fault--suffer a reduction in status.

The Body Silent, by Robert Murphy, P. 108

It hit me like a ton of bricks today why, without fail, people always ask me, after they see or hear about Sophie, "Do you have any other children?"

When I respond in the affirmative, I always get a satisfied nod from them. The point being, of course, that this tragedy that is Sophie is somehow mitigated by the fact that I have a "real" or "normal" kid. Sort of makes up for it, you know?

I am struck by the baldface ignorance in the assumption that somehow I value one of my children's life over the other, or that I perceive Sophie's to be some sort of a failure that is redeemed by the existence of non-disabled offspring.

My disabled daughter's life is, to me, merely a reality that I have incorporated into my world view. Sadly for the larger society this is something with which they never come to grips. It devalues the lives of the disabled. Even when equipped with a full understanding of what our child's needs are, and what would bring "quality" to their decidedly different life, we parents face an ever uphill battle.

Though I have had many a bone to pick with the social model of disability, more and more I have come to perceive its most basic premise to be fundamentally truthful; that is, "disability" is a social construct as much as, or more than a set of physical deficits. In other words, the biggest problem anyone with any type of disability faces is the fact that society at large continues to refuse to incorporate disability into the general world view. This marginalizes an entire, and significant population...and by extension, we caregivers.

I will be the first to say that my daughter's transition into disability has forced me to dispose of all typical assumptions and expectations of what life has to offer. I highly value this stripping down, and consider it one of the incredible benefits that has come from caring for a child with severe disabilities. I have, however, read so many posts or comments of late where parents of kids with severe disabilities express their frustration with their own lives, never mind that of their child(ren). There is this feeling of looking out a window at a world to which they once belonged but in which they can no longer take part. When the simple act of going outside for a walk on a nice day becomes an event necessitating near military style strategy and execution to pull off safely and successfully, it's not hard to see where bitterness at watching the easy lives of normies can set in. I also see where some parents themselves never come to "embrace" the reality of their child(ren)'s disability. By that I mean they never move past perceiving their children as sick charges requiring convalescent care and repair, rather than actual people with lives to live and missions, however mysterious to our limited minds, to accomplish.

Imagine how different things would be for both caregiver and disabled child/adult if the world were to finally and formally accept disability into its consciousness. Finally, social barriers would be eliminated. Physical barriers would disappear in lock step with this new awareness. Schools, hospitals, public areas, even most peoples' new homes would be truly accessible...not just physically, but in being actually welcoming. Imagine not being afraid of leaving your child at any sort of day facility because you know that they would be genuinely cared for, appreciated, and appropriately stimulated. Imagine care support available in your home...again, good care...that would allow you to go to work or play outside the home, with confidence, and peace of mind. Imagine not going bankrupt.

It would be unbelievably freeing. Resentment would fall. That hard shell that we all build around our hearts to protect ourselves from the pain would soften a bit. Much stress would dissipate. Not all, of course. There is still an enormous amount of energy both physical and emotional required to care for an individual with severe challenges, but at least there would no longer be this feeling of being part of a "I just wish they would all go away" fringe group.

If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so weave a less arbitrary social fabric, one in which each diverse human gift will find a fitting place.
Margaret Mead

2011-11-08T07:17:00.004-05:00

WORD - PAINTINGS

PIET LEUTSCH

I have sought earnestly and with great diligence that good and high virtue by which man may draw closest to God... and as far as my intelligence would permit, I find that high virtue to be pure disinterest, that is, detachment from creatures. Our Lord said to Martha 'Unum est necessarium', which is to say; to be untroubled and pure, one thing is necessary and that is disinterest.

The only way to find God, is to let go of God

Meister Eckhart

Apologies in advance for this post.

2011-11-07T13:37:00.001-05:00

I guess you can say that I want everything in the new apartment to be well hung.

2011-11-05T12:12:00.004-04:00

Dante's seven circles of hell.
I swear...does that not look like a parking garage??

So, one morning, I get to go out on my own..to escape the confines of the hospital to run home for a quick shower and some decent coffee...with a side order of sanity. The complex is acres and acres in size, and once you negotiate it's convoluted halls, you then have to get out of the parking garage.

Yes. That's the goal.

You know, I'm a smart woman...or so my university profs led me to believe...and I can drive. But, like forms, I have trouble with parking garages. They require a certain way of thinking to which I am unaccustomed. I think in roundabout ways, or deal with esoteric concepts...forms and parking garages require a linear sort of thought process that I suck at. So...it also doesn't help that things are poorly marked...or is that just an excuse?

Anyway...I am exhausted, coffee-less and my eyes not too well focused. I find the car, which, thank god, is parked two spaces away from the door. I am on the second floor...I back out of my spot and drive forward, following arrows that say "Exit/Park". Oh, man...two commands, one tired brain, and circle upon circle of levels. I go around the same floor a couple of times before finding my way out. I am certain a spaceship full of aliens is watching this particular lab rat with interest..."Look Grok, how this one is not negotiating the labyrinth very well...should we terminate it upon exit?" "Well, Gaf, there is more to the test, let us wait and hold judgment for a time."

Phew.

I am at the exit. It is an automated...yes automated...exit arm. You put in your day pass ticket, and the arm is supposed to go up. There is an attendant, at the automated exit. This is NOT a good sign. I put in my pass...time is up...at midnight the night before. Fuck. The arm won't go up. So...put in credit card...won't take debit...and just effing pay whatever the fuck they want. The attendant comes over. Shit. He has a lovely Scottish brogue. He examines my situation. "Ya canno pay heeerrrrrr with thaaaat, because of (incomprehensible explanation)..." Broad smile from him. "Yeu'll ha'to pay at the office...just back up and go riiiiigth. Sorrrreeeee!"

I smile...it's not his fault after all that the aliens set it up this way.

I do as I am told. And...ugh...cannot find the office, try to back out past something that decides it does not want me to back out, so it puts up a bump...and then, I just stop, put the car in park where it sits and get out, walk around a bit, and find the office...with a young woman in it who is decidedly not happy to be a "parking office employee". To her I say...."I just want to get out of this garage." The aliens whisper something in her ear piece...and she sets me up with another day pass. I get back to the car, back to the automated, attendant managed exit...and get out!

There are several men with big X's on their orange vests, directing traffic. They are pointing in every direction. My Roman Catholic tendencies kick in full gear and I obey one waving arm after the other...and end up at the entrance of parking garage 2...with no exit to the street.

Now, the aliens are just laughing.

I do a three point turn, get back to the street...ignore all waving arms, and find my way to a street that exits the hospital campus. I excitedly follow the curving drive toward freedom! I can see it...I can see the street...almost there...then my road narrows, curbs appear...and no left turn is possible. I MUST exit right...in the opposite direction of my destination.

GAH!

I get on the main drag, turn left into the parking lot of some business, turn my car around, get back on the road, finally, toward home. It took me 20 minutes to get out. 20 minutes.

"Gaf, we shall let this specimen live? It is decidedly focused on executing all necessary tasks, if not very adept. Yes?" "Indeed Grok. It was worth the entertainment alone. Let us follow this one during the cafeteria trials as well."

Oy...we're home

2011-11-03T19:44:00.003-04:00

Well, you all know how much going to the hospital sucks. I don't need to go into detail about the 12 hour wait in emerg...and how when OUR neurosurgeon showed up she grabbed a kit and drew 30cc's of brain fluid off Sophie's brain right there in the ER...

Sophie was having a perfectly normal day...we were actually driving to the mall...and she suddenly just got massively agitated. I stopped the car, the caregiver and I tried to settle her, but she looked like hell, so I drove back home. She ended up throwing up only once after that...but then the swelling behind the eyes started. It's called peri-orbital edema...Isn't that a fun word, kiddies! Now you say it...perry como hyena...very good class!!

Swelling, but she can still open her eyes

Can't open her eyes anymore

When she was moving, it was posturing and agitation

Last time that happened, she was in full SIADH...and the hyponatremia. AND the last time that happened the big doctor in PCCU told me the swelling was a direct result of the sodium imbalance. Well...FUCK HIM...because he was dead wrong...and this mislead the ER people, down a yellow brick road with nothing at the end. This was all about shunt blockage and it took way too long to get to that conclusion. Ultrasound, x-rays, shuntogram...nothing really conclusive. By the time we got up to a room and there was talk of possibly doing surgery, things were getting dangerous. Sophie's eyes were swollen shut and she was generally unresponsive. The neurosurgeon's nurse clinician came up to see Sophie at that point and she was distressed. We were in surgery within the hour. As it turns out, after examining both the valve at the head and the distal end of the shunt in her belly, there was what the neurosurgeon called a proteinated fragment in the shunt. That's a fancy word for some little piece of crap got in there and wreaked havoc.

Getting a shuntogram
like being a sandwich between hunks of metal

Valve end...post surgery...

Anyway...the kid is okay now. Exhausted, nicely toxic of course, but ate and drank well today. Now that we are home, I can take really good care of her. I am full of bad coffee and some very expensive yet questionable foodstuffs, but stuck to salads as much as possible. And we were in the "new hospital" which is lovely, clean and equipped with a computer at every bed! What more could I ask for...except to never have to do it again.

Room view and view from room!

Thank you, as always, for the prayers, kind words and support. You all make it a bit easier.

A quickie update

2011-11-02T21:07:00.003-04:00

Thank you all for your kind thoughts and prayers. They found some "gunk" that blocked Sophie's shunt. She was opened up at the abdomen and at the head, but small incisions. She is okay now...resting here, post-op. We may leave tomorrow eve...I hope!! I will give you details later...complete with scary pictures!

Again...thanks for your support!

2011-11-02T02:16:00.001-04:00

We are in hospital with Sophie...in emergency for now. WE think maybe a shunt problem. Keep us in your thoughts. Thanks!

Sunday night supper for two...

2011-10-31T11:52:00.002-04:00

Before...

After...

Sophie loves her scallops!

Still here!

2011-10-30T07:22:00.005-04:00

Yes! I am still here! And I know that your lives are just that less full when you don't read something from me on a regular basis...**cough**, **splutter**.

Yeah...

Anyway...dealing with stuff. First....THANK YOU to Stacie from Riley's Smile for the award....!!!

Check out her site and the beautiful photo of her and her son on the header of her blog. Now, there are rules to this award, but, being the rebel, selfish, egotistical bitch that I am these days, I am not going to follow them. And believe me, being a recovering Catholic, not being OBEDIENT, is really, really hard to do. Comedic stereotypes say Jewish mothers are responsible for Jewish guilt...well, in Catholicism, the whole fucking church and GOD rain it down on you...;)

I have been working more than I thought I would at the Montessori school. Usually, it's just for what amounts to half of a day...but I got 6 hours the other day. It's great! I have been with the toddlers a lot, which is new territory for me. Admittedly, the toddlers have not quite been my cup of tea in the past, but really, they are starting to grow on me (as are the frighteningly massive amounts of germs the little buggers expel from their bodies). Natch, the most difficult ones are deeply attracted to me. Hmmmmm. One little gal in particular has so much personality, it literally explodes from her. She likes to plunk herself down into my lap, or tackle me into the shins to get me to pick her up, so she can vigorously talk her gibberish at me, attempting to explain herself. Then there's the one little guy who spends the entire day, testing boundaries. That little fellow is at school, every day for 10 hours...**sigh**. I did get a chance to spend some time in a couple of Casa level classrooms...2 1/2 to 5 year olds...I was spontaneously gifted some artwork...an orange ghost, a series of instruments from the string family of musical instruments...one little one walked past and randomly ran her hands through my hair. I adore them. I simply, and utterly, adore them.

Sophie is doing well. Wow. I mean, she has had some "rough" days, but nothing like the "rough days" I have come to know and not enjoy. I dare not speculate as to why. I will simply enjoy them while they are here. Thanks for the respite, disability gods!!

Finally, you gotta see and read this post from Stinker Babies. Yes, folks, you know I'm sort of an "autism follower", which means I am hooked into a number of autism blogs. You know why? 'Cause autism parents are friggin' awesome, and for some reason, killer funny. You know, there is one thing I get from these parents: unlike those of us whose kids are clearly, and visibly disabled, kids with autism look normal...and parents of such kids face a great deal of abuse from outsiders who like to think they know better. It's a whole different ball game. Anyway...go read the post...and watch the video, Anthem of Snarkiness!!

Assisted Suicide and Disability: Dr. Oz doesn't get it

2011-10-22T11:24:00.002-04:00

Sorry Buddy...but EPIC FAIL!!

Please take a moment to go visit Bill Peace at his blog "Bad Cripple", Dr. Oz on assisted suicide: a train wreck. He was invited to be in the "educated audience" area of the studio audience for a Dr. Oz show. The topic was supposed to be a "discussion" about assisted suicide (again, isn't that an oxymoron??) I thought it would be all about things like end-stage cancer, palliative care, PVS and the like. But no, it was all about disability...and how ALL disabled people are suffering and just want to die and how, damn it, we should let them have that choice!! (and maybe help them along a little by letting insurance pay for it...**cough**). And there was more and worse stuff.

If any of you out there liked the guy, (Dr. Oz that is), you may change your views after this one. I had a very long and detailed discussion with Bill as to what went on there the other day. It's appalling...and Bill was very even with his writing. Sometimes, I think people need a good, hard slap upside the head.

Dr. Oz...you fucked up. You don't get it. Sorry...but your show on this issue SUCKS!

GO SEE BILL'S POST
HERE.

Gelastic seizures for that party atmosphere!

2011-10-20T15:34:00.003-04:00

So...I have been craving cupcakes. Yep. Cupcakes. Since I drove past a little place called Razzle Dazzle Cupcakes. I had already tried the other cupcake place in town and it just was epic fail, so I was excited and hopeful for this new place.

Finally, yesterday morning, I popped Sophie and lovely caregiver into the van, and off we drove to the promised land! I was not disappointed!

They were as yummy as they looked. Yes...full of overly fluffed whipped-up shortening icing...I believe in buttercream you see...but still good for some fun.

Click on the pic to see the names of these things!

Mmmm....there's only one other thing I moan for like that...
coffee...yeah...coffee

So the trip to the store and back was fine and dandy, and Sophie carried on with her morning and lunch. It was afterward that she started, you know, laughing. Not a "I'm so happy with joy" kinda laughing, but more like "Holy shit, I can't stop laughing even though nothing funny is going on" kinda laughing.

GAH...I can't stop laughing!

The kid just kept going on and off mostly with the over the top stuff. I knew she was going to pop for real at some point (you know...gelastic seizures aren't "real"...). Sophie is never one to disappoint. She managed to pull off a nice little tonic/clonic about a half hour before snack time. So, after a little post-ictal nap, we celebrated with cupcakes!!

Hey...you can't say I don't know how to take advantage of a little laughing spell!

I'm good at screwing...photo included.

2011-10-16T08:38:00.007-04:00

Well...I bet you thought you were going to get a grainy, night vision style video link to YouTube of my antics. Ha! Eat your heart out, Paris Hilton, photo only, you nasty folks. Check it out!

Oh yeah. I did that all by myself.

See that...eyed that up. Not one bit of measuring.
(that has nothing to do with being lazy, I swear)

You know, I have always been good with tools...of all sorts (snort, snigger)...'cause after all, I am a farm girl and was my Dad's best surrogate son. I followed him around for most of my young life, right up until I was off to university...(hell, the man was so friggin' alpha, stray dogs followed him around even though he ignored them completely)...so I learned all about tools and such. He actually thought I was some sort of genius when it came to tools because he would randomly bark out some order for me to get him some screwdriver or wrench, never specifying which one, but I always managed to bring him the right one. Now, admittedly, some of that was plain luck, some of it was the fact that I understood my dad, at an intuitive level. I learned early in the game that my Dad spoke in tip of the iceberg sort of ways. That is, I am certain he had vast images in his mind of completed tasks, and giant plans for living, but he only ever spoke once sentence about these global perspectives...and the poor bastards around him had to fill in the blanks. Somehow, my Dad never registered the fact that my endless queries as to details after one of his minimalist pronouncements was usually what led me to "just know" what to get or do for him. For the most part, he was oblivious to the people around him, seeing them, I think, as one sees people and cityscapes from the cockpit of an airplane. It was never an interruption to his thought processes that some spec below should occasionally shout out for direction.

So, yeah...I'm good with tools. Now, just ignore the fact that during this particular adventure, I punched past the screw and hit my middle finger only to give it a nice little blood blister...or that the day before I chopped off a small piece of my thumb with the French knife. Well, I was distracted while using the French knife, you know, thinking about, well, tools...c'mon! I was planning my next task! Tsk. You people.

Heh heh heh...from food porn to tool porn...guys get that better, right guys? (**cough**)

So...I am fixing up the apartment bit by bit. It's looking quite decent, nothing Martha Stewart would approve of, natch, but clean and organized.

This is my laundry/storage room. Funny how the building ad failed to mention that "ensuite laundry" meant the "ensuite storage" would be obliterated...since they are the same room. You will note the inclusion of a two step "ladder" for me to be able to reach anything in there, except, of course, the lovely hanging cleaning devices which are perfectly placed for a 5 foot female, thank you very much.

And then there is the kitchen...good size with ancient, not-so-energy-efficient appliances.

You will be happy to know that I purchased a combination convection/microwave oven. I don't have to use that other giant waste of space at all!

Oooooooh....

Ahhhhhhhh.....

I can bake, broil, or microwave...yay!! After all, really it's just the two of us.

Speaking of which, Sophie is co-operating quite nicely. Not too many seizures and really good during the day. She is going through some sort of growth spurt so she's eating huge meals...and getting kinda tight in the muscles, so I have to exercise her a lot. Nights have been a bit rough, though, lately...so I'm a bit more tired than usual. Overall, we are getting on with the getting on and life is good.

Amazing things we do

2011-10-09T13:44:00.004-04:00

Amazing things parents of severely disabled kids do:

The most amazing thing I did today was retrain my child to swallow.
The most amazing thing I did today was change a diaper full of sick feces several times without dropping any on the floor.
The most amazing thing I did today was go to work after being up all night.
The most amazing thing I did today was not swear when my child had the tenth seizure of the day.
The most amazing thing I did today was do all the therapy on schedule.
The most amazing thing I did today was remember to refill all the prescriptions.
The most amazing thing I did today was not tell the neurologist to fuck off.
The most amazing thing I did today was keep all the vomit on the towels, and off the carpet.
The most amazing thing I did today was stay calm while my child stimmed with the same noise all day.
The most amazing thing I did today was not yell at a staring stranger.
The most amazing thing I did today was get up this morning.

Amazing things severely disabled kids do:

The most amazing thing s/he did today was smile.
The most amazing thing s/he did today was not hit her/himself...or someone else.
The most amazing thing s/he did today was make it through a school day.
The most amazing thing s/he did today was not aspirate.
The most amazing thing s/he did today was sleep.
The most amazing thing s/he did today was tolerate another medical exam.
The most amazing thing s/he did today was keep all the food down.
The most amazing thing s/he did today was focus on an object.
The most amazing thing s/he did today was breathe without help.
The most amazing thing s/he did today was respond to me.
The most amazing thing s/he did today was get out of the hospital.
The most amazing thing s/he did today was wake up alive this morning.

To all of you, who do the most amazing things.

Nothing says "I've arrived" like bad plumbing and chemical burns

2011-10-06T21:41:00.006-04:00

Yeppir folks, Sophie and I are living the good life (**cough**) in a two bedroom apartment. The second bedroom is for the Eldest, of course, as she is still "in transition" as they say.

Okay...so, there is the obligatory cleaning frenzy that accompanies any move, but especially a move into an apartment. Let's face it...other people's dirt is just disgusting, even when the place is considered "clean" by the super's standards.

I hit the bathrooms first...tub, shower, sinks...all coated with, well...let's call a spade a spade shall we...crud. Recently scrubbed crud, but crud nonetheless. It becomes clear to me very early in the game that no amount of Comet and elbow grease is going to remedy the problem, so I go out and purchase two bottles of CLR. Oh yeah baby...time to effing clean those bathrooms!!

Now, CLR smells like hell, but it works. I put on rubber gloves, plug the tub, and empty a generous amount of the stuff into the bottom. Then I start to swish it around with a rag. Such fun! It starts to dissolve years of yucky. This, ladies and gentlemen, gets me very excited. I can actually see shiny porcelain appear, and chrome shine...woohoo (what? this doesn't excite you? And your problem is...?) So...in the thrall of cleanliness and chemical offense to my nasal passages, I get so vigorous with my cleaning that I can feel drops of the stuff burning the skin on my arms where I splash it. Still oblivious to my excessive zeal, I then get a good whack of the stuff in my right eye! OMG! First aid!! First aid!! All those stupid training videos worked. I ripped off the impossible-to-take-off-when-you-need-to gloves, bolt to the sink (okay...turn to the sink, since there really isn't enough room in the bathroom to actually bolt) and start vigorously splashing cold water into my eye. I then stumbled over to my daughter's med cabinet to soothe it further with a saline wash.

Yeah...but damn, those bathrooms are clean!! Not that I can really see them anymore...

And one more thing. You know, I am the sort who lives in her kitchen. It has to be perfect. Well...let's just say that when one moves into an apartment...an affordable one...standards of "perfection" must be lowered considerably. We're looking at original '80's stuff here, folks.

Well, I can tolerate most of the room, but the faucet had to go. Really...look at it...

Not my actual faucet...stunning look alike

There is no way that the management would change that faucet as long as it was working. I knew it would have to come out of my own pocket, but the stupid thing was unworkable in my mind. So, I got myself a good plumber and a lovely faucet was installed.

Oooooh, pretty!

So I wash up dishes and fill up Brita jugs and wipe down counters and reach under the sink to grab something and...upon accidentally brushing the u-bend with my arm...the whole thing literally crumbles to pieces and dumps water onto the bottom of the cupboard. Fortunately, there is a little bucket under there and I manage to get it placed to catch most of the water.

**sigh**

The property management's plumber...a really funny guy who liked to sing the first line of songs when the mood struck him...came over right the next morning and fixed the whole thing. My kitchen sink is now awesome again.

Now, if I can just get the super to come up and fix that front right burner on my stove...

Bitch...with a capital "B"!!!

2011-10-04T06:28:00.003-04:00

For this post, Prayer of Protection, (go read it, it's a short one) I received this comment:

Anonymous said...: What a vile, ugly post. Try a BSN program and THEN be an expert about what nurses do. That "charting" you refer to is required by LAW. You, as a parent, do not have to chart every singel thing YOU say or do or fear a lawsuit. In nursing, if it was not documented, it was not considered done. Sorry you had a bad nurse(s), but your insinuations about all nurses are downright shitty. God help nurses from mean-spirited people like you who have no respect for a profession many people have busted their asses to get. You would not make it through one day of clinicals. Here is some advice...don't like nurses and think they are all stupid? Take care of your own damn kid. You are a Bitch.; Monday, 03 October, 2011

Ah, my dearest bloggy people. This lovely anonymous doesn't know me very well, does she (and I bet you are Canadian, not sure, but would bet)? But I will be gentle....

Dear Nurse Anonymous,

"Methinks thou dost protest too much..."

It is unfortunate that you were so offended by this post. Sadly, every single bit of it is true. As a matter of fact, it is quite restrained in tone.

You have no idea, no idea whatsoever about the kind of gross incompetence that I and many, many others have had to deal with from "your profession" over the years. I could write you a long, long list of the downright dangerous situations that nurses have put my child in. I could send you over to a blog or two with stories to read from others as well. To do so would be a waste of my very precious time, however, and certainly it would have little effect on you. I could open up this post to people in my world asking for stories, but that would just be a downer of epic proportions.

"Sorry you have had bad nurse(s)"...nurseSSSSS...yes. It was so bad in the first 6 months after my child's stroke that we got rid of them all and hired "untrained" women who were far, far superior caregivers to those of "your profession". I will have respect for "your profession" as soon as "your profession" has respect for we parents, the frontline caregivers for our severely disabled children.

As for charting...ah...you missed the point, didn't you? Of course you did. Charting is an important part of nursing. I have no problems with it. I DO have problems with nurses who obsess about it, and put it before my child's care, who turn their backs on her to scratch technical jargon in their notebooks while my kid goes into a seizure.

As for taking care of my own child...would love to!! I am lucky enough to have nursing support here in Ontario, but if the government saw fit to pay ME instead of a slew nurses, I would do it in a heartbeat, and more effectively and efficiently. I could save the government thousands of dollars in my daughter's care. Secondly, I DO take care of my child, for hours and hours and hours. I have done it with no supports whatsoever too, day in and day out. Don't dare insinuate that I cannot or will not. She is the joy of my days and will forever be.

Right now, I have a rotation of 4 wonderful nurses. They are excellent, professional and I would trust them to care for my child in my absence. But there were two others that I had removed from her care first, because they were incompetent. That's two out of six nurses since I moved in here a year and a half ago. You do the math. And it's not even that good elsewhere.

To conclude, your comment does not upset me in the least. As a matter of fact, you probably confirm more about that post than you know. Facts are facts. I'm just telling it like it is. You may learn something valuable from it, if you read it again.

Best wishes to you.

Landed

2011-10-01T21:21:00.003-04:00

Made the move,
pretty much intact...
sort of!

On the move.

2011-09-28T20:59:00.003-04:00

See you in a bit, hopefully.

Oh so quotable kids...

2011-09-26T14:46:00.003-04:00

I spent a few hours this morning supplying at the Montessori school. I got one fabulous, unsolicited hug...and some sad news from some little people:

Someone dead-ed a caterpillar.
Yeah...it was Jackson and he didn't even say sorry.

2011-09-24T08:20:00.005-04:00

Yeah...right...

heather said...: I remember when my nephew was still in the hospital, a social worker pulled me aside and told me that I needed to talk to my sister about "taking care of herself." Her suggestion was that we leave my nephew alone with the nursing staff. It was the oddest moment of utter disconnect between the reality of what was happening and the message, I guess, of the professional medical community. We had a family member with my nephew at all times because he was too helpless, then, to be alone even for a minute let alone over night. There were more times than I could count where he would have died if a family member had not been at his bedside. My sister was "taking care of herself." She was eating, she was sleeping, showering, what else could be done? People keep saying this to her now too as though this is the only help they can provide, "take care of yourself." But what is the choice? What does that even mean? How can you take care of yourself when someone you love needs you, really needs you? Who will take care of someone when its hard except for a person who loves that someone? I suppose we must all figure this out.

Anonymous said...: Heather, you are totally wrong. Your sister has to take care of herself too or she will become exhausted, burned out, or worse. And then what kind of mother would she be? Yes, the baby comes first, but she must take care of herself and recharge her battery. I think this is what the nurse was trying to say.

These two comments are taken from a post I wrote a while back entitled "Chronic Sorrow". It was based on an article that someone had mentioned on Single Dad's blog. The latter comment was sent in just a couple of days ago. I find that these two illustrate quite clearly that line between "Gets it" and "Doesn't get it".

To me, the most notable line in Heather's comment, after she described the situation, was this: My sister was "taking care of herself".

What outsiders do not understand about our lives is that "the norm" does not come into play. We all have to create our own "norms", and those are actually fluid, changing from day to day, week to week, year to year depending on the child's status. What Anonymous does not understand here, is that for Heather's sister to have walked away and left her child to "the professionals"...as is so often the advice from those ignorant of what really goes on in hospitals when it comes to our kids...would have done her sister more harm than good. By being by her child's side, the woman was likely more free of stress, worry and heartache than if she "took time for herself"...and did what exactly? Wonder (quite legitimately) if her kid would still be alive when she got back to the hospital?

A perfect case in point here: I do not use night nursing. Most parents do. I save my nursing hours for daytime relief because I cannot stand the thought of someone watching over my daughter at night. I cannot sleep. If I were to do what is "expected" of me, what "everyone else" does, I would be exhausted. Right now, I can sleep easy by my daughter's side. When she has bad nights, I can catch up in other ways. Night nursing is NOT for me. I am healthier and happier as a direct result of my choice to live this way.

Those on the outside don't get just how strong and resilient a parent/caregiver can be when they know what they are doing is right on the money when it comes to their kid's care. They also don't understand that, after a while, we just aren't that fussy about what we need to "recharge our batteries". For some, a walk a day is good. Maybe a nap. Maybe a movie on TV watched from start to finish. It's different for each person.

What wears us down more is all that "helpful" advice we get about how we should be dealing with our unique situations. We don't need to be questioned and directed by well-meaning outsiders. We need support. That might mean having a good meal picked up and delivered to us, some flowers, a good book, do our laundry, do our yard work. Find out...then shut up. Funny though, how much easier it is to just say "Take care of yourself!", than actually say, "What can I do that would help you?"

The one thing we do have to be careful of, though, is not to fall into a rigid pattern of care that does not take into account new realities. I think this is where caregiver burnout comes into play, because, there is indeed such a thing. Sometimes, our kids require full on care. Other times, it's okay to let up because they are more stable, or because we have more help, or whatever. It's good, then to re-evaluate what might be necessary for good care for ourselves and for our children. But that is strictly a personal thing. No one has the right to make those decisions for you...or to tell you that you are "completely wrong".

So, Anonymous...I know you mean well...but, be careful. It's not that simple.

And you know, the funniest part about this post is that, the other day, I wrote a note to a friend..."Make sure you don't put yourself at the bottom of the list of "people I need to take care of"...

Challenge Met!

2011-09-22T15:48:00.002-04:00

Bill Peace has responded to the challenge of my previous post. I am put in my place eruditely. Go read it!! Thanks Bill!!

Identity and Disability: Part II

By Dr. William Peace

Identity: A Challenge to the Bad Cripple

2011-09-21T16:25:00.004-04:00

A strong sense of identity gives man an idea he can do no wrong;
too little accomplishes the same.
Djuna Barnes

I am a crippled man. I am a proud man. Hear me roar. ... Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis....The idea I consider disability to be part of my identity simply does not cross the mind of others—non disabled others.
Dr. William Peace, Bad Cripple.

Unfortunately, I cannot enter into a detailed academic discussion about the nature of identity. I can, however, write that the concept of disability and identity is a hot topic. It causes all out word wars.

I am a person with a disability, not a disabled person.
Disabled and proud.
I wouldn't be "me" without my disability.
I am not my disability.
I am not disabled, I am "neurodiverse".

I wonder often about how these discussions relate to my daughter and others like her...those with severe intellectual and physical disabilities. Unlike those who make the bold pronouncements above, my daughter cannot express herself. As a matter of fact, I don't have a clue as to how she sees herself at all. She always refers to herself in the third person. Who is she, to herself? Does she even know, or care? Does it matter?

I don't know.

There was a time, when my daughter was five, that, if she and some other kids were in a room together and someone would ask me, "Which one is yours", I would say, "The curly head with the blue eyes", or some such thing. Now, if she were in a room with other "normal" kids I would say, "The kid in the chair". I suppose I could still say, "curly hair, blue eyes"...but it's her disability that is the most identifiable aspect of her now. But is it her identity?

I don't know.

But, another thing I can tell you, is that, with our severely disabled kids, the whole "disabled and proud" thing doesn't fly. Take a moment and read this post from "The Socially Inappropriate Mom", and you'll get the picture...the very clear picture...of how we, in our world, see disability.

Oh yeah...if it was possible to fix it, we would...fuck identity.

My daughter's disabilities make her identifiable, but I am not keen on making them her identity. Is it because, as Bill Peace says, disability is a stigmatized identity? No. Even though he is correct. I "don't care" that my daughter is disabled...it doesn't embarrass me, nor do I care what others think. But I do not interpret her disabilities as gifts that enhance or make her who she is. Who she is, her identity, is, to me, more about her personality, her little quirks and preferences. Her disabilities, on the other hand, stifle her, stifle who she is. She cannot write for long because it will hurt her arm. She cannot express herself because she can't catch hold of the words. She cannot put together a plan for her life because she is completely dependent on others and can't even think in those terms.

So I wonder about a slogan for kids like mine, to throw out there in the word wars:

Disabled identity: it fucking sucks.

New Book!

2011-09-21T11:52:00.004-04:00

Hurray! This one put together by Lynn Hudoba (with a little help from Big Daddy) of My Life as an Ungrateful, Unhinged and Unwilling Draftee into the Autism Army. (Whew...) Happily, I have a story in there about Sophie! Here is the description below:

Wit and Wisdom From The Parents of Special Needs Kids brings together dozens of the best writers in the blogosphere, sharing their stories of both the challenges and rewards of raising children with autism and other cognitive disabilities. More than forty essays are included in this unique compilation,covering topics such as sensory issues, the difficulties of social interaction, the impact on marriage and typical siblings, and the world of special educationand therapies. These parents cover the gamut of experiences -- from initially receiving the diagnosis for their child and reconsidering their expectationsfor the future to learning how to let go of children as young adults – as well as an emotional spectrum from sadness and loss, to the frustrations of assimilating not-so-typical children into the typical world, to the joy of living amongsttheir often hilarious quirks and obsessions. Wit and Wisdom From The Parents of Special Needs Kids is a must read for anyone whose life has been affected by intellectual disabilities. Every parent of a special needs child will identify with the life experiencesincluded in this book -- they are as varied, unique, and inspiring as the children themselves.

Get your copy at Amazon.

Response to cool comments

2011-09-19T11:07:00.002-04:00

Well...
I have such awesome readers. They make me think and think and think, and then think some more.

The last post addressed the concept of the "sick role", but there was another train of thought that sort of crept into that...inspirational stories, the Marathon Man or "team Hoyt", and what that all means.

I have written two posts that touch on these things: Marathon Man, and Why Inspirational Stories Bug Me. I am not entirely satisfied with the Marathon Man piece, about team Hoyt. Anytime you take on a topic like that, it can sound like sour grapes.

I don't know if I can rightly put my finger on it, but the whole team Hoyt thing makes me uncomfortable when I frame it with the concept of "disability activism", and you know, maybe the Dad really just wants to do stuff for his kid. But whatever his personal intentions, the media perspective is what reigns supreme: the dad is awesome and inspirational and the kid is a sideshow. That's how it looks to me. Jack Lalane towing a full grown man rather than a boat or two. How does this advance the public's perception of disability? It inspires them to what, exactly? To write a cheque and think they've done their bit? Then go to their inaccessible work place, take their kids to their inaccessible school, grumble about how precious tax dollars are wasted on the disabled, and wow, isn't that guy great for doing marathons with his kid?

In any case, I am reprinting a wonderful comment left by Rene...I think she said it best...

Claire, thank you for this post. I have thought a lot about this too, but not clearly or well.

I think what you've written really nails my dis-ease with "inspirational" stories of people overcoming handicaps, and the pressure for any parent of a child with disabilities to be a "warrior", on top of just being a mom, dad, partner, human. Who is the target audience for these stories? Perhaps they are only meant to be a vicarious thrill, hope-fodder for people who are able-bodied and neurotypical. I remember reading my share of them in Reader's Digest when I was a kid myself. Good Sunday afternoon reading.

This makes me sound like a grump, I'm afraid. No doubt the people who are the subject of such stories are wonderful, and the intentions are sterling all around. I certainly don't begrudge other people's triumphs and I don't think that these people should stop being exceptional & wonderful. It's just that the bar for being wonderful & inspiring & worthy is always getting raised, and my son can't jump that high.

I guess the question is: how could these stories be framed/told in a way that doesn't diminish those who will never be cured, recovered, run marathons, or maybe even survive?

"Overcoming" Disability

2011-09-18T08:53:00.006-04:00

No doubt you have heard about the terrible tragedy that befell a number of people at a Nevada airplane show. In a newspaper article I read this morning, among those was a young man with muscular dystrophy .

"A Phoenix man who overcame a disability to earn a college degree and start his own Internet company was among the nine people killed in the Reno air show crash, his family said Saturday", the article states.

It is not my intention to be crass here, using a tragedy to make a point. I simply want to discuss the concept of "overcoming disability", a common theme in the media and societal consciousness, which is featured so prominently in this story. I am also working through some ideas that will assist in a presentation that I am preparing for a sociology class.

I have been, as a result, reading up on the concept of "the sick role" as conceived by the American sociologist Talcott Parsons in 1951. Basically, à la Wikipedia, it's this:

Rights:
- The sick person is exempt from normal social roles
- The sick person is not responsible for their condition

Obligations:
- The sick person should try to get well
- The sick person should seek technically competent help and cooperate with the medical professional

Now...a caveat. This is the bare bones of the theory. Reams of scholarly material exists on this stuff, pro, con, nuanced, etc. This is simply a jumping off point for this exploration. I would like to proceed from here with the assumption that this theory, basically, does a pretty good job at summarizing how society perceives the "sick person".

Now, it has been argued...and it would seem logical...that disability does not fit in to this model of "the sick role" because disability is a permanent condition, not a transient one, as is sickness. I will argue, however, that this theory plays itself out significantly in societal perceptions of disability.

Newspapers and magazines (think Reader's Digest..) just love disability "success" stories, stories of people who overcome their disabilities or who perform some sort of extreme feat in relation to disability, as in the "Marathon Man" who does triathlons with his disabled son. People who "succeed" are doing "the right thing", in that they are trying to "get well", as per their "sick role". This is supported and celebrated by society.

I will venture to say that no one with a disability actually overcomes their disability. Whatever they are doing...job, marriage, getting on with life...they are still disabled. What they have actually overcome is society's bias against disability. It is interesting to note the double standard that exists in the "sick role" in relation to the disabled. Society views the disabled as sick, therefore the disabled are exempt from normal social roles. However, because disability is a life long condition, society does not tolerate for long this exemption...at least not in attitude. Society will not provide accommodations for the disabled as it is the obligation of the sick person to get well, not society's job to assist them in doing so. The disabled are left with either being completely isolated by virtue of their inability to "get well", as is their expected obligation, or they are "overly" lauded for "succeeding" against the odds that society itself stacks against them. It never occurs to anyone, under the "sick role" model, that a person with a disability has a right to a life, whatever that might mean to them. Hence, the disabled are always fighting for services...access to education, to buildings, to opportunities, to technologies that will enable them to live as independently/comfortably as possible.

Consequently we have this strange story where a "successful" disabled person has died and that it is considered more of a tragedy, more newsworthy, than the death of a regular person. That's fundamentally because society in general does not expect the disabled to have any sort of life...or to have expectations of having any sort of life...outside of being disabled. When they pull it off, it's a big effing deal.

Okay. Let's take this one step further. Let's get kids like ours involved, kids that will never, ever become educated, or independent or successful by any current societal definition, even that which they might allow for a more capable crip.

Can you say "screwed"?

By virtue of their sick role, they are exempt from societal roles, and it's not their fault. By the same token, though, society is not obligated to include them in their fold, and can pity their lot in life. Then, by virtue of their sick role, they are supposed to try and get better, via medical means. Our children cannot "get better", so they are an automatic "fail", but parents who vigorously pursue cures or fixes have society's blessings (though none from disability activists) for trying. So...bionic legs are okay to dump obscene amounts of research money into, but creating good quality, affordable wheelchairs is not.

Epic fail on every front. No stories about our kids until some parent kills one off, and then him/herself...and that is just the tragedy of disability, isn't it? And, in the end, our severely disabled population is better off dead anyway, since they will never get better and have a life.

One might argue somewhat differently...that our severely disabled population is better off dead because society will never allow for the creation of any sort of good life, outside of the acceptable norm of school, job, marriage, family.

Though I am certain other theories about health, illness and disability have since been put forth, Parson's sick role theories are alive and well and "dys-functionning" significantly in today's society. For sure there has been some progress...but not enough to stop perceptions about "overcoming disability" that still pervade the news.

Summary of a blog

2011-09-15T11:17:00.007-04:00

A few years ago, when I started this blog, I had quite a few ideas in mind about it. Some things changed, some things stayed the same as the blog evolved...as I evolved.

Originally, I thought it would be a more "factual/political" sort of blog...and it was, sort of, but did not stay that way for long. "Life" with a severely disabled child, apparently, had to include stories about exploding glass pans with turkey in it, earwigs, and food porn.

Originally, too, I thought that I had lots to teach the world about alternative medicine and how it could be used effectively on kids like ours. Then, you know, I discovered at least three other people who rely heavily on alternatives...and at least one who is religiously medical, with great success for the child.

I knew very few people understood what it was like to live this way, and that our experiences rarely saw expression anywhere in "the mainstream" of society. That hasn't changed, sadly. Nor has people's general preference to just pretend disability does not exist, hoping it will all just go away if they don't look at it, or that disabled people are somehow not worthy of the rights of "normal" folks.

I never imagined, in a million years, that I would make genuine friendships with incredible people, some of whom have changed my life, in dramatic ways, forever.

More than anything, I have acquired a far more compassionate and humbled view on what it means to care for a child with severe disabilities. I have come to understand that there are myriad ways of getting the job done, and that, short of neglect and abuse of course, all of it is okay. I understand, now too, that sometimes it is in the interest of the greater good to put a child in a residential environment...and that, if there is any judgment to pass on that particular choice, it's in that society, in general, provides shamefully few, genuinely decent places where a parent can do this without a heavy, heavy heart.

I understand why women choose abortion of even a potentially disabled fetus over the "risk" of having to deal with a disabled child, in the matters of his or her care and in the potential for his or her suffering. And there is where lies my greatest dismay.

We are, it seems to me in this 21st century, at a crossroads. Medical technology has advanced by leaps and bounds in ways we can hardly grasp, thus allowing for the possibility of children (and adults) with severe, life-long compromised bodies and minds to live for years. This fact will guarantee the existence of more and more children like ours.

Conversely, society has almost gone backwards in its approach to dealing with disability of any sort, cutting and hacking away at already fragile support systems that benefit the disabled and their caregivers. More and more, too, businesses, schools and every other sort of institution, balk at accommodations for the disabled, whether they be social or physical in nature, citing unfair advantage, or burdensome cost to either taxpayers or to the business owners themselves. Perversely, furthermore, society has seen the error of it's ways in "warehousing" disabled people, has closed numerous institutions, but has provided little in the way of appropriate alternatives, pushing the onus of life long care back onto parents or other family members.

The situation seems intractable. Hence, why even take the slightest chance of bringing a disabled child into the world to begin with? Why not support programs of euthanasia, when faced with the likelihood of bankruptcy from medical costs or slow slide into insanity from lack of support?

And still they preach "thou shalt not kill" from the pulpits.

It's the worst sort of rock and hard place. Damned (literally, to some) if you do, damned if you don't.

Meanwhile, there are those of us succeeding, even in the most hostile of climates. And when that happens, it is the tendency for outsiders to point and say, "See! So and so is doing it! You can too! God gives you nothing you cannot handle! Mind over matter! Where there's a will, there's a way!"

But we have all read the stories where parents kill their children and then themselves...or just their kid...or just themselves. It's not that simple. Some live successfully...most live by the seat of their pants, the edge of their sanity.

To summarize my blog:
I am among the lucky ones.
My heart is with those who manage to just hold it together from one day to the next.
My anger is toward the majority of people that sweep disability under the rug when, at any given moment, they could join its ranks and face the stigma and unfair disadvantages that their narrow-minded selfish, greediness created in the first place.
My battles are to prove the worthiness, the value, the perfection of the life of those with disabilities.
My love is with my comrades-in-arms in the blog world.
My life is with my severely disabled child.

Blessed are the Children

2011-09-09T10:52:00.005-04:00

¹⁵ People were also bringing babies to Jesus for him to place his hands on them. When the disciples saw this, they rebuked them. ¹⁶ But Jesus called the children to him and said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. ¹⁷ Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.”

Luke 18:15-17

Jesus loved the little children, so the song goes, and I can understand why.

What few people think about when it comes to the man Jesus was that he was an eminently political figure in his time. He was a pain in the ass for pretty much every one who surrounded him. The Zealots envisioned him as The One, finally, who could lead them out from under Roman tyranny. To the Jewish hierarchy, he was a dangerous threat to the delicate political and religious stability that had been negotiated with the Roman rulers, the slaughter of their children decades earlier likely still fresh in their minds. To the Romans, he was a powder keg, a potential focal point for Jewish restlessness and dissatisfaction, who could lead their significant numbers into a messy rebellion. And, to the Essenes, if Jesus actually was one of them as is speculated, he would have been a far too public person for their decidedly "stay off the radar" tastes.

Imagine, then, the man spending time around children...what a relief it would have been to be enveloped by their guilessness, their unadulterated joy of life.

This morning, I spent a total of maybe 20 minutes at the Montessori school where I will be called in for supply teaching, in order to meet staff and handle some paperwork. In one of the classrooms, true to form in the first week of school, there was a crisis. A tiny figure was busy vomiting in the bathroom, nerves having gotten the best of her that morning. As I entered the classroom to meet the teacher, she running to get something, her assistant comforting the distraught child, a group of little souls surrounded me immediately and began relating their experience:

Curly blond head: Shannon is throwing up in the bathroom!
Me: Oh dear. That's too bad.
Curly: It almost made me throw up! But I only did this...(indicates a gagging motion).
Me: Well...I guess you will be okay.
Big Eyes Gal: And when she barfed, it was green!
Me: Must have been what she ate then.
Little guy: It's very sad. She is sad. (confirmation all around from the group)

I am, quite simply, in the kingdom of heaven! In the midst of a move and a family in transition, there are many uncomfortable (to put it mildly) moments, hours, days! To be around the children is a relief, a balm to the soul. I know how Jesus must have felt.

However many times I will be called upon to be at the school this year, I know each time will be extraordinary for the simple fact that children bring peace and respite from adult woes. I am a lucky woman.

Fall/Winter coats...repeat!

2011-09-08T08:57:00.003-04:00

I am repeating this post from way back...in case it might be helpful to any new folks out there. Seems appropriate with the cooler weather coming in. You can click on the photos to enlarge.

Here are some pics of Sophie's coats...Single Dad mentioned that he liked my idea of cutting out the backs of the coats. I thought everybody did that...just in case it's new to you, here's what it looks like. I just cut and then run a simple straight stitch with a machine to keep the fabric together and to keep it from fraying. I can't sew, so anybody can do this too. Also good are warm capes (very stylish these days apparently) which can easily be cut in one line along the back and tossed over kid in wheelchair with no arm issues.

This is how the coat looks on (sorry she's still in her pyjamas!). Sophie's chair has non-movable laterals and a hip lateral and hip belt. It looks good on, don't you think? You can't tell that it's cut. Coat is from Lands End, a company I highly recommend (note: their quality has been dropping since I wrote this...trying to keep the same price point with crappy materials. I recommend you read all customer reviews provided). Good prices, clothes that endure endless washing, excellent customer service...I love them...plus it's all catalogue shopping...I hate shopping.

Let me know if you have any questions!

Hee hee hee!!!

2011-09-06T13:58:00.002-04:00

Claire at 21....(yep..the true '80's perm...)

Can you tell I am sorting through old photos as I pack?

Sophie at five years old

2011-09-05T11:55:00.001-04:00

Dressing my kid: what would Jesus do?

2011-09-04T10:31:00.004-04:00

Jesus in a t-shirt

You have to understand; my kid cannot dress herself. Most of you are in the same boat. You have to dress your kid.

Now, my kid HATES being dressed. She turns every dressing event into a wrestling match. What little volitional movement she has, she uses at dressing time to make it difficult for herself and for the person dressing her. That goes for me as well as for anyone else...and believe me, I have tried every sort of technique there is: slow, fast, calm, etc. etc. etc.

Okay...so I have established the simple facts. But....now we progress to the simple act of putting on a t-shirt...which my daughter wears every day...by certain members of a certain profession. For some strange and inexplicable reason, this simple act gets very complicated with this particular group.

So...let's talk putting on a t-shirt...What Would Jesus Do??

Heck...Jesus wore robes, right? But, it's basically the same idea, right? Three holes: one for the head and two for the arms...one for each arm.

AM I RIGHT ABOUT THAT PEOPLE???

So...what goes first, Jesus?

Okay. To be perfectly honest, I have seen people do the following: put both arms through the armholes and then pop their head into the head hole. Yeah..."normal" people can do that. You know why? Because they have full function of their arms, neck, head and back. Maybe Jesus did that. But Jesus did not have a stroke and contractures, right?

***BIG PATIENT SIGH RIGHT HERE.***

Okay, Jesus...what goes first? Might I venture to say that the head might go into the head hole first? Yes? D'ya think that's a good place to start for a crip kid???

EH???

And then, maybe, after you had been taught by a parent of a kid with a stroke and arm contractures, you might put the most compromised arm through first, because you have, at that point, the most fabric to work with. Then, you might put in the arm that works real well, because the shirt is mostly on by then and there isn't quite as much stretch. And there you have it. Head, arm, arm. Done.

RIGHT???

Apparently not. Apparently there is no rhyme or reason to t-shirt donning. Apparently, for crip kids, it's a whole new ball game. So, apparently that involves putting one arm in, stretching the head hole over the kid's head and THEN, putting in the second arm. Never mind that this particular technique pulls the kid's hair and cranks their neck in a position that is almost impossible for them to strike and that said kid usually cries out in pain during the procedure. Never mind that. Never mind that, after being told numerous times about the "head, arm, arm" rule, which, a long time ago, I thought was how 99.9% of the population put on a t-shirt, that this arm, head, arm thing is still attempted...or the alternative two-arms-then-pop-over-the-head thing, a close second.

GAH!

Yeah...are you getting my frustration here, Jesus folks? So...what would Jesus do? Likely not lose his cool and and say "FUCK? WHAT IS THE PROBLEM WITH YOU PEOPLE? IT'S HEAD, ARM, ARM. DUH!!!".

Well, I didn't do that either, but I thought it, and we all know what Jesus thinks of those nasty thoughts. So...sorry there, man.

I know...got bigger fish to fry, you'd think. But, damn,

It's just a t-shirt! Put.it.on.

2011-09-02T12:32:00.002-04:00

Ah, when to the heart of man
Was it ever less than a treason
To go with the drift of things,
To yield with a grace to reason,
And bow and accept the end
Of a love or a season?

from Reluctance by Robert Frost

Feel like dancin'

2011-08-31T22:04:00.004-04:00

The last few days have been rough for me.

Too many of my friends were facing crises in their own lives.

We were packing up the Eldest to go back to University. She is like sunshine all bottled up in hair and laughter. She will be gone for a while.

Then there is just the simple reality of getting ready for my own move and everything that entails, physically and psychologically.

Sophie was sick yesterday (but she didn't throw up so that was great). And she was up for hours and hours in the night.

So I asked you all to send me some good thoughts...and you did, and I got personal emails of concern and good wishes and offers of coffee and chocolate.

Today...

I spent some time in the church up the road in silent contemplation, and I felt better, much better.

And...

I have been looking into retraining as an ABA therapist for early intervention with kids on the autism spectrum. It will allow me to work from a home office (this is in the "long term plan" of mine). I found out from my contact that the local children's centre has just stepped up their ABA program in the community...they need more therapists...which may somehow translate into a training ground for me...

AND

I got a call from the Montessori school at which I was interviewed this past summer (from a resume printed in COMIC SANS, **cough**) and I am officially on their "staff" as a supply teacher. I get to meet the rest of the staff and attend to the details next Friday.

NOW...

I feel like dancin'....

THANK YOU!!

2011-08-30T20:36:00.000-04:00

Thanks for helping me get through the day!!

I'll get by with a little help from my friends

2011-08-30T08:36:00.005-04:00

It seems there are lots of crises going around. Sometimes, life sure gets tricky. I have a hard time asking for help, usually, but I sure could use some right now. I would appreciate your positive thoughts and prayers sent my way when you all have a moment. I know everything will be okay. Thanks so much!

On Sifton Bog

2011-08-29T08:55:00.004-04:00

There is no question that I love the things that come with city life. I like good restaurants, high end coffee, and all kinds of other "upscale" things that I can't actually afford but like to associate myself with (!!). Then, of course, there are good hospitals...sigh...

Having said that, I absolutely MUST have access to some sort of unadulterated nature. It is my personal "valium", retreat, religious experience, sanity...you name it. Luckily, there are such retreats in London...in the strangest places! Deep in the heart of suburbia and box stores lies the the Sifton Bog, a nature preserve of exceptional beauty. It's a small place, but far from the madding crowds. Yesterday, with too many dear friends either battling the effects of a hurricane, struggling, sick children or hospital stays, I took my two fab daughters and our wonderful helper out to the bog boardwalk, on a day that was remarkably beautiful. The intention was to take some photos to share. One would imagine that a bog is a nasty, smelly place...not so!! It is sweet smelling and full of extraordinary sights and sounds.

Hope these pics soothe your soul as they do mine. All photos courtesy of the Eldest.

The New Place

2011-08-27T13:16:00.004-04:00

There it is...my new home as of Oct. 1, 2011. It is, literally, two driveways away from where I live now...on the same ravine, in the back, away from the busy main drag. I have a two bedroom unit, 2nd floor...lots of trees for Sophie and I to look at and love. The current renter is selling me a less than year old, top of the line washer/dryer combo for half of what it's worth, so I neither have to buy nor move a set. The building is small and full of "mature" renters...all 50+, very clean and quiet.

Here goes.

Jack Layton and an unapologetically nasty political rant

2011-08-26T09:27:00.000-04:00

I don't think that I have ever gotten teary eyed over the death of a politician, but that's what happened when I heard about Jack Layton's death. He lost his battle with cancer. Layton, in the end, was like Moses...he took his people to the top, as leader of the opposition...but never got to the promised land. He had to step down before he could take Parliament by storm.

Jack Layton's name was synonymous with the NDP. It was his relentless energy and his genuine desire to really serve the average Canadian that made the party what it is today. With the Liberals in a shambles and the Conservatives going the way of the American right, the NDP was poised to become the new voice of Canadians...the middle ground with a heavy dose of social responsibility. The ONE who could, finally, stand up to Steven Harper.

Layton's death is, to me, like a portent, the sign of imminent danger...the death of a prophet who was shouting to the deaf and beleaguered masses: watch out, here comes "the right".

The rise of an extreme form of right wing politics in Canada via the likes of Steven Harper and the fundamentalist Christian values he holds horrifies me. The rocket fuel dangerous connection between religion and politics a sign of the imminent degradation of our rights.

I despise the far political right. I will make no bones about it. In Canada, until quite recently, it remained a fringe group looked upon askance by most Canadians. In truth, most of us watched the antics of the far political right in the U.S. with a certain amount of humour. No more. It's on our doorstep and we had better stop laughing.

There was a time when Conservative politics was about a certain type of fiscal responsibility, a certain type of free-market-within-reason sort of perspective. Conservative values supported the little guy and the big guy, as long as he was working his/her best to make a living. My father was a prime example of this. He was both a small "c" and big "C" conservative. Yet, he was instrumental in the creation of Crop Insurance in Ontario. My Dad knew that the vagaries of the weather could devastate a farmer. In the end, it was bad business to let this happen. Provide some protection so that the average joe could survive to work another season, and eventually get back on his feet. My father, furthermore, never complained about paying taxes, even though he was always on the high end of the tax bracket. He understood that a solid tax base provided good infrastructure and good schools, and good health care. This was the basis of a healthy population, one that could work and maintain a vibrant economy.

Conservatism of this sort is dead and gone in the current political climate. Across Canada, idiots like Rob Ford and possibly soon Tim Hudak are being put into power with Neanderthal ideas about how to keep money in the pockets of....the rich, the big business, the multinationals. They bail out CEO's with pocket money that could, quite literally, save entire third world countries....or at least rebuild our own cities devastated by tornadoes or other natural disasters. They slowly and insidiously destroy our healthcare system with the constant threat of privatization. The big insurance companies south or our border are waiting with baited breath to sweep in and "improve" our system.

Take ONE FUCKING MINUTE to read this post from Elizabeth Aquino and you will see the future of Canada if we go the way of the right and allow the politics of Jack Layton to die with him. I have read far too much of what goes on in the lives of private American citizens, the struggles of good people with good work ethics and great compassion to live with blinkers on.

The far political right perversely likes to paint all social assistance to be supportive of lazy dead beats sponging off taxpayers. They are far less able to see the PUTRID ROT in their own ranks: the greed, the avarice, the unabashed selfishness, the dead weight on the face of the earth that are the Hilton's and Kardashian's of the world. The super rich would sooner upgrade their yacht or spend millions on a wedding than find a way, via taxation or donation, to provide homes for the poor black or white bastards that lost a home during Katrina. The whole government has turned its back on its own to fund a war under immensely questionable circumstances. Our current Canadian government is idiotically walking lock-step behind.

Arab spring? Forget it. I am watching for the long overdue rebellion of the average, good American people who are being crushed under the weight of debt, unsupported by their almost non-existent social programs and health care. I await the moment when these millions of good, honest people are tired of being called lazy by the oligarchy when, in fact, they are victims of circumstance and only ask for a simple, open minded leg up in life from time to time. I expect that, when it hits, it will be a horrifying thing to watch. Our government leaders in the Great White North had better not be fiddling in the dark when it does.

I find it always incredible that, when hard times hit, people fall into fear patterns and start to hold on tighter to what little they have instead of adopting the stance that it's time to share and share alike. It's the classic playing out of the stone soup story. It is working together that will bring us through, as will thinking out of the box. It is NOT time to imagine that some trickle down theory will somehow magically solve the problems many years in the making. It is NOT the time to think that anyone with a million dollars to throw at a party or home redecoration plan is going to give a shit about the little guy in the trenches. It's time to find a way to make things as good as possible for as many as possible, and that there, my friends, is called "social programs".

I am not stupid. I know that too much government interference, too much government running things has serious problems of its own. But we don't need to go the extreme other way either. Again...there was a time...and we are moving too quickly far away from reasonable policies written up by politicians who are serving Canadians rather than a political agenda or Steven Harper himself. Jack Layton lived to serve. Let's not let everything he stood for die with him. Let's not let the conservative right ruin this great country, filled with good compassionate, open minded people of many cultures. Remember what Jack Layton said on his death bed:

Old Woman

2011-08-25T10:49:00.004-04:00

On my walk today, I crossed paths with an old woman. She might have been in her 80's. She walked carefully in her flat shoes, capri pants and little white floppy hat. As we passed each other, she smiled and I said "good morning". She had a pretty, soft, smile and I thought, "Awwwww, isn't she sweet?"

And suddenly, in my brain, I stopped dead in my tracks.

At 50, I have a particular sense of myself and I am treated by others, fundamentally, as a thinking human being with the added assumption that I have some sort of life. If anyone ever approached me and out loud said to me, "awww, you look so sweet!", I would likely spit on them.

Why, then, would I dare to treat an older woman in the same way? And I got to thinking....

Is/was she married? Or did she live without a partner most of her life?
Does she have children? Did she watch one die?
Did she like to bake, or calculate the dividends on her investments? Both?
When was the last time she laughed out loud? The last time she cried?
When was the last time she had sex? Was she ever raped?
Did she run a corporation, swim across a lake, drive a tractor and plough a field?
Did she hit her kids when they misbehaved? Did she abuse them? Was she abused?
Did she like to dance? Was she a world traveller? Did she settle for a life that left her dreams unfulfilled?
Did she still have dreams? Was she bitter?
Is she happy, now?

Next time I meet an old woman, I will greet her as I do, and I will think: "There goes a woman, like me, maybe, maybe not."

Let's help a friend

2011-08-24T08:35:00.003-04:00

Erika (and Phil), over at Hummingbird, is currently in the PICU with Izzy the Bean who is seizing non-stop. It is a very serious situation. Let's do what we do best in blog land and send that wonderful family all the love we can from across the world.

Beautiful, silly Sophie

2011-08-23T11:06:00.000-04:00

Time for a bit of humour.

2011-08-21T11:59:00.001-04:00

Nothing to do with disability...just Hugh Laurie, just one below Johnny Depp in my little black book.

Chronic sorrow

2011-08-19T09:49:00.006-04:00

Chronic sorrow does not mean that the parents don't love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent's lives. They co-exist; they do not blend into one color, or feeling.

A post Single Dad wrote prompted a long response from a new commentor, J.W., in which was included a link to an article entitled "On Chronic Sorrow". It is a very short piece, worth reading. I makes quite a bit of sense, to me anyway.

My experience in reading material related to severe disability and parenting is that a great deal of the literature does indeed acknowledge "sorrow" and "grieving", but it tends to focus around the child. Parents grieve the loss of the child's abilities or of dreams they had for the child and they ache at the child's pain, and so on. This is all very true. What we don't talk about a lot, though, is what is lost for the parent(s).

I think the reason we don't talk about it much is because it potentially makes us sound selfish.

Greater love has no one than this, that he lay down his life for his friends.
John 15:13

This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers.
John 3:16

If you were brought up as any kind of Christian, these words might ring in your ears, for one thing. But there is more of course....

Above is a photo of my old ballet pointe shoes. I have had them for years...since I was 19. They are a bit small for me now, though I can still put them on and stand in them. As I pack things to make the move to an apartment, I have to sort through what I will and will not keep. I find it very easy to toss things. I am no pack rat...but...

The shoes represent for me a dream left behind. I had wanted to be a ballet dancer since as long as I can remember. I loved the classical music. I loved the line created by the dancers' bodies. I loved the pointe shoes...having a sort of foot fetish. I had actually signed up as a dance major at university. I had no illusions, by then, of becoming a professional dancer, but I knew that I wanted to teach kids to dance. Alas, I was too far behind and had had too few lessons in my life overall to catch up sufficiently. I also discovered fairly quickly that I did not have the single minded dedication to the craft that dance requires of its subjects. I was more on the "bookish" side of things.

So I changed majors, and university, and moved on. But I kept the shoes...and still love the dance.

My daughter's transition into disability has led me to have to abandon a great many other aspirations. I think the same is true for most parents. Over the years, you peel away layer after layer of hopes, dreams, desires. In a society that values far too many stupid and petty things, this is often a good thing. It brings one back to basics, teaches one to understand what is really valuable in life. I, personally, have benefited greatly from this stripping down.

I think, though, there is a point where one has to come to terms with a deeper issue. At what point is one's abandonment of things harmful, in some way, to the self? Where does one draw the line at dropping everything to care for a child? Where does your child end and you begin?

I have had to think about this a great deal. It is easy to accuse people of selfishness if they don't drop everything and care for their kid exclusively. I have read stories of parents who have done just that, lived utterly and completely for the child...and they seemed to draw a great pleasure from their life of service. I also know that for single parents, abandoning all for a child is just simply not economically feasible, and that they feel guilty that they cannot be around their child more to care for them.

I suppose it's all okay. In the end, each person has to sit down and come up with what is realistic for them. However, if a part of you is dying inside, it is important to get to its root and address it. If you don't, you will fall prey to a host of "evil spirits", that will, in the end, be yours and your child's undoing. Balance, in our lives, is a very different animal than that in the lives of people whose children are not severely disabled. Professionals who counsel us usually have no clue and continue to spout the usual platitudes about "time for yourself" and "respite". The fact remains that balance must be defined, sought out and lived. It is survival, quite simply.

New things have come into my life that I desire deeply. I have to assess carefully how much I am willing to put into pursuing them...whether they are, indeed, that important to the life I share so inextricably with my child, whether they are even truly possible to get hold of, even by this eternal optimist. I know that sometimes I will simply have to let go and that it will be hard, so hard to do. More sorrow will weave itself into my life.

I will do as with the ballet slippers though. Hold the memories, the thoughts, the feelings, love them still, then change course and move ahead.

A moment for peace

2011-08-17T14:58:00.006-04:00

I just came back from a swim at the quarry in St. Mary's Ontario. It is THE most amazing and wonderful swimming experience. The walls are of stone, the water is deep (there is no place to stand, you have to tread water all the time), and, thanks to a summer of 90+ weather every day, cool, but not cold.

What makes the swim doubly wonderful is that I get to do it with the Eldest. We were the only two adults in the water....all the rest were 18 and under for sure. In any case, it's just pure unadulterated joy for a water lover like myself. Afterwards, we treated ourselves to a bit of ice cream, and tolerated getting chatted up by a business man in a fancy sports car trying to find his way to Detroit. Good luck to you buddy!

A moment of respite for my weary soul.

P.S. The condo is sold...my different life begins Oct. 3.

Draw Winners!!

2011-08-09T16:00:00.002-04:00

Yes...I know...of all the images I could have picked
but those stripes! Make my eyes jump...

Okay! The winners have been chosen by Sophie herself! Thank you everyone for your comments. You are a fun bunch of folks! It was also nice to meet some new people. I was particularly fond of Miss 20/20's comment...her first one, to get "free stuff". LOL!!! Awesome! You are my kind of lady.

To those of you who did not win! Awwwwww! But you can always buy the book...it's not very costly...and there is a direct link on my sidebar. Just click on the book.

So....heeeeeeeerrrrrrrrrrre's Sophie...choosing the winners!!!

Just in case you did not get that...

Erika (I already have your address!)
A New Kind of Perfect
lyndylou
Kelly (Hi! Welcome!)

Send me your addresses at crwandsrw@gmail.com and I will mail you a copy of the book post-haste.

Thanks for participating!

A REAL book give away!!!

2011-08-06T13:54:00.007-04:00

Guess what? August is Big Daddy Autism Awareness month! Oh yes! And so, to celebrate, I am doing a book give away! Oh yes! Not one, but FOUR books! Hurray!

BUT....

Is it REAL? Is this a REAL give away? I mean, am I a real person doing a real give away with real books?

YES!!

Here's proof!

THIS is me....

Sucky, blurred Skype pic...
I mean, who but a true Luddite would put up something that bad?

This is me in the same shot as my daughter, Sophie, also a real person (hey, I can't do CG stuff, believe me...can barely manage the blog site...)

Clearly a winter shot...

This is ME in a past life...(Erika found it)

Yeah...that's a whip...
What do you mean, you don't believe in past lives?

These are the books!!!

Authentic photo taken from my dining table,
the one that rarely hosts properly prepared Thanksgiving turkey.

Do you believe me now, 'cause if you don't, well, you won't enter and you won't get a book. And that would truly suck, you know?

So...to get one of these babies, just put in a comment...with no money down and preferably not anonymously...and I will do a random draw of the names. Then I will announce the winner on the blog. Then you will HAVE to send me your address. Promise not to sell it to marketing gypsies selling ladies undergarments made in China. I will ship ANYWHERE in the world at MY expense! Really! You need not be from North America at all. Would love to send one overseas, like, to Rhode Island or something...**cough**, or to that country called Europe...(please know that I am joking, okay, about not knowing my geography, not about sending the books anywhere?)

So...have address, will send book.

Do it. DO IT NOW!!

;)

2011-08-05T07:14:00.000-04:00

Oh, man...not been writing much, I know. Just have to tell you why, briefly.

Sophie has just gone through a bad stretch...one night would fall under the new category of "epic horror-show bad". It's not just that the poor child hardly slept, but, she was in a wild eyed, scared-horse-panic for a great part of it. The day previous was full of odd seizures and episodes.

Throughout the worst night, I did my best to help Sophie deal with her neurologically imposed anxiety and discomfort with a variety of herbs, remedies and over-the-counter drugs, most of which only mitigated the symptoms by a hair's breadth. To help her feel more "normal" we watched a bit of TV (possibly a questionable tactic in and of itself), and at one point nibbled on pearl bocconcini since I can only imagine being starved from that much tension if it were coursing through my body for hours on end. I sometimes wondered about a good stiff drink...for both of us...how it might benefit, or not...massaged, rocked, held her in my arms, soothed and sang through the night. Around 4 AM things seemed to start to break...and she seemed better in the morning. The "hows" and "whys" of these days remain a mystery, other than the fact that my daughter is a teenager with massive brain damage....

The next day started out okay, but she was very uncomfortable in her tummy and we had to do some early "bowel stuff", during which she actually cried from pain. I don't know about your kids, but mine doesn't actually cry, with tears, anymore, unless her hair is pulled or she is in excruciating pain. I have seen her cry four times in 11 years. Then, her g-tube blocked and I had to change it. None of this was very comfortable. The next day after that, Sophie spent periodically laughing uncontrollably at nothing.

I had started to write this whole political post thingy in relation to this, and it's taken so long and been through so many revisions that, well, my heart isn't into it anymore and Sophie is headed for another bout of crap anyway. Life is the same as it always has been with her, up and down and I deal from day to day. There's really nothing new or particularly dramatic, just the general flow of her life.

Really, though, consuming me here is the transition from this house to another living space with Sophie in tow. That will bring with it some serious blog material, but later, much later...

I haven't lost my sense of humour entirely, though you wouldn't know that from reading the latest stuff. I'm still here and mostly crazy, though drained. I will soon be doing a book giveaway...with real, actual books to give away (ahem)...but, things will be mostly on the dark side of this moon for a while.

Just so you know. Now, of course, now that I have written this, some awesome material will suddenly spring to mind and I will be compelled to bore you all with it. But, in the meantime, just hanging in here and hope to stay connected until the wind shifts.

Love you all.

Wisdom from the Eldest

2011-07-31T08:41:00.003-04:00

Well, it's not exactly "out of the mouths of babes" when it comes from a 20 year old...but she is a babe, even if she doesn't quite know it yet...and she is quite wise...

In high school, the Eldest was frequently accused of not having her "boy radar" on. That is, when boys talked to her, she would answer any queries in a practical manner and just, you know, carry on. Even after repeatedly being told by both her parents that the ONLY reason a teen guy talks to a girl is because he is interested and that she has to be a little more encouraging, she just didn't seem to catch on. Finally, annoyed with us at the constant reminders of "you need to have your boy radar on", she countered...

"Well, I guess I'll just have to wait for the boy that turns it on for me."

*******************

Upon being told of the "iPad giveaway scandal" that most recently hit "the special needs community" (ugh), which came as such a BIG SHOCK to everyone, she says,

"Mom, that happens all the time! It's a constant scam with iPads!"

After which she gives me the look of

DUH...adults....

*********************

The Eldest is a Harry Potter geek...the books and the movies...full of what she admits to be a ton of useless information.

"Did you know that the 7th Harry Potter movie is about to break one billion dollars in sales? One billion dollars!! Can you imagine what people like in some African country could do with one billion dollars, if we could manage to get enough people to give up $10??"

Indeed, my dearest daughter, indeed.

In the night

2011-07-23T08:52:00.006-04:00

THE SMALL HOURS.

The wee small hours of blindfold night,
Before the darkness gropes to light,

Are hours most ill to lie awake.

Then will remorseless Conscience slake
His wrath, his vengeance, and his spite,
Tormenting every sleepless wight,

And into endless ages make
The wee small hours;

Then Memories' ghosts arise upright,

Then strong, throat-gripping fears affright;
Brave hearts long broke once more will break,
Old sorrow new life-lease will take,

And these condemn us to this plight,
The wee small hours.

Christine Siebeneck Swayne

Strange how it is at night.

In some ways for me it's the best time because it's the only time that I am "alone"...right beside my daughter, yes...but if she's sleeping, I am alone. It's a relief. In my mind, laying quietly, I can be who I am or who I wish to become, with no limits imposed from the outside.

On the other hand, the night can bring with it its demons. It can be the time when the crushing realities of the day, of the future, surface and bear their weight on your soul, and your mind.

Sometimes I am thinking of the heartache of friends, the blinking lights of others' nighttime travails on my computer screen, and it segues into my own despair, a sort of selfish backlash during those short-long nights. I know, though, that we share a common plight: the sweeping panic rising up and the impossibility of escape, the never-to-be fulfilled dreams, hopes, desires, the longings for ourselves and our children, all boxed up and put away during the practical daylight hours.

Children's books about nighttime bogeymen all focus on how light shed, brings into clear focus ordinary things of which we need not be afraid. All is well, in the end; all is manageable with clear vision and patience. We can untangle the twisted details of life one at a time when we can actually see them properly. There are no monsters under the bed.

I am wary though, knowing that even the bright light of the sun cannot illuminate, in the end, all that stands before me. There are always shadows, under-places where dust gathers and things hide. Nocturnal creatures are real and have a legitimate place of their own in the scheme of things. Though their dark-time movements seem furtive, they are nonetheless purposeful. When some rest has been had and dawn breaks, I am forced to acknowledge their final presence as they scuttle away for the day. I might make peace with them during the day, or come to some gentle understanding of their motives; but, in the end, I will be forced to entertain their presence again in my weakest moments and wonder what they portend.

This is one reason I moderate comments...

2011-07-22T21:56:00.004-04:00

Keep "it" up indeed....

Damned if you do...Redirect

2011-07-21T11:30:00.005-04:00

Sometimes it seems as though I may be talking out of both sides of my mouth, as the saying goes. I suspect that most of you know by now that I stand staunchly behind the rights of the disabled in a world that wishes they would all just disappear.

However, the last post addressing some issues with the Jeremy Fraser case seems to make it look like either I am waffling or just plain full of shit...which, I will never say is an impossibility.

I certainly do not need a face to the name as though I considered this to be an academic discussion. It is not. A boy died of cancer. A boy with "moderate to severe" autism died of cancer. That IS a salient detail. A court of law decided, after long proceedings, that the mother was at fault for this, for reasons specified in the summary linked in the previous post.

My intention was not to address the specifics of the case, originally. I was looking more at some general assumptions related to disability that, to me, seemed to be flowing through it.

I must say, however, that the case set off far too many alarm bells in my mind. At a gut level, to me, there is something off about it...and the word "railroaded" keeps coming to mind. It is possible (likely?), though, that I am hopelessly biased here against the medical establishment, and toward the mother, toward someone who, in my mind, badly handled an overwhelming situation. Don't get me wrong...I am not saying she did anything "right". I do remain uncomfortable with the accusation of "attempted murder".

If there is one thing that I have learned when it comes to dealing with a child with disabilities is that it is not work for the fainthearted or the weak of mind. I am very clear that the people with whom I communicate on almost a daily basis via blogging are exceptional people with exceptional skills, which is what allows them to blog at all. We writers (and I use that term loosely for myself!) and commentors tend to be a strong-willed sort, with the mental/(maybe) financial/support structure wherewithal to advocate, fight, think through, analyze and carry on with life all the while changing diapers and managing seizures and therapy. In this big, wide world, however, there are many more sorts who are just getting by. For some coping means completely obeying what they are told to do by outsiders...experts, professionals, doctors...while managing their kid(s) and trying to get food on the table (and please...this is an observation, not an accusation). The minute one starts to think for oneself, however, about what is good/bad, right/not right for their child, things can get tricky and it takes a strong sense of self to entertain other possibilities and sort the seed from the chaff. In my mind...and I may be totally off base because, really, I will never know...LaBrie had an idea in her head about the nature of her autistic child's care, and she just couldn't, in the end, come up with a balanced plan. Sadly too, she might not have been articulate enough to bring any understanding about her genuine motives to the proceedings.

And maybe she was a murderous bitch who hated her kid...because there are such parents in the world.

I hope you're getting my point though.

Anyway...back to the original post. If indeed LaBrie was the terrible mother the jury felt she was, then the judge's point about criminal law being used to protect the most vulnerable from such people is right on.

As for my point about being held to a higher standard of morality....that one hit home for some people who commented, and I stand by that, though looking beyond the Fraser case and perhaps using a softer literary touch...

It remains my sense that parents of kids with severe challenges are, for the most part, expected to pull off miracles with very little support. For our troubles, we often receive judgment and recrimination (or worse...indifference) when we fall short of expected goals or if we choose roads less travelled. When we attempt to dare to expect more than minimum standards for our children, when we question party lines, when we refuse categorization and generalizations, we are labelled as difficult and are met with resistance. Though, as judge Welch remarked "many of these children have an inspiring capacity for growth and love", society really doesn't value that enough to make care and support of "these children" a priority. Yet, in the end, if we fail outright and some tragedy befalls our children, society is quick to point fingers that we hurt "the most vulnerable of society" and that our crime is the worst of all.

So...there you go. My little tap dance in light of new material. I most certainly am appreciative of the level and tone of the discussion. It has been highly educational for me.

Damned if you do, damned if you don't.

2011-07-20T11:24:00.005-04:00

I am having an ongoing conversation with another blogger about Jeremy Fraser, a young boy with autism who died from cancer. His mother has been sentenced to a lengthy prison term for attempted murder, for having withheld the home chemo medications that would, supposedly, have saved his life.

It's about autism.
It's about disability.
It's about cancer.
It's about cancer drugs.
It's about doctors.
It's about freedom for parents to make choices for their children.
It's about right to life.
It's about right to die.

Can I tell you...I love this expression...

OY!!
(Oy a Yiddish exclamation of chagrin, dismay, exasperation or pain...Wikipedia)

Because of the nature of the conversation I am having with said other blogger (okay, it's Rachel...), I have been reading as many articles as I can find to get as accurate a picture of the situation as possible. So far, the Boston Globe seems to have the best coverage...understandably since it all went down in Massachusetts (Salem, to be precise...ah....coincidence?). Typically of such stories though, the details range from one story to another and there are heavy biases reflected here and there...mostly against the mom...

...who had the audacity to be confused, depressed, financially strapped, divorced and caring for an autistic son who ranges, as the news would have it, from being a happy little guy to being moderately severely autistic (non-verbal, in diapers...that much seems to be true).

Okay...there's my bias. You all can read the stories and come to your own conclusions (and I know most of you won't because, really do you have that much time on your hands? or are you depressed, confused, financially strapped, single (or might as well be), and caring for a severely challenged kid?)

Okay...so I do have a point to this post...but I am not certain I am up to making it as clear as I would like. But I DO know that you all out there will enlighten me one way or another...and I promise...no comment shredding...

HERE is a link to Judge Richard E. Welch III's sentence memorandum (it's not too long). There is something patently hypocritical about the judgment. Not that the judge was so, but that it represents a twisted stance held by society towards those of us caring for children with severe challenges.

The memorandum clearly acknowledges the challenges faced by the mother, but because her child was disabled, seems to hold her to a higher standard of morality than everyone else is expected to live up to. This reminds of a time when lawmakers would punish women more harshly than men for similar crimes committed because women were supposed to be, by nature, more moral than men. This made the crime, then, more heinous, it's perpetrator more depraved, since it represented a greater fall from grace, so to speak.

So, to me, the judgment says this: we as a society will stand in the sidelines and openly admire all you parents of kids with disabilities and the amazing things you do under such trying circumstances, as we provide you with only a modicum of assistance. But if you screw up with your kid we will nail you to the wall, to the full extent of the law, because you should have been more able than any normal parent to care for a child who represents the most vulnerable of human kind.

Judge Welch writes...

In the last analysis, our society is judged on how we protect it's most vulnerable members, the children and the disabled. Jeremy Fraser, being a child with moderately severe autism, was one of society's weakest and most beleaguered. Society has a most significant interest in using the criminal justice system to discourage and prevent substantial injury to such disabled children.

My dear Judge Welch...you have it sooooo backward.

A society that genuinely cares about it's most vulnerable will not wait until the point is reached where the criminal justice system is required. That is its last resort, not its first. A society that genuinely cares about its most vulnerable will, right from the start, supply the necessary, appropriate supports to those individuals and their families so that they can do the best possible job with what life has handed them.

As a parent of a child with severe disabilities I will not be held to a higher standard of morality because society chooses to ignore us until we fail.

Super Wild and Crazy Sophisms

2011-07-18T21:40:00.002-04:00

Sometimes Sophie gets into these really verbal streaks...why? Who knows! But the results are often hilarious. Stick with this from start to finish...killer. You will never think of Jack and the Beanstalk in the same way again. Sorry for the quality...dim in the room and Sophie was in bed.

Complete the following sentence...

2011-07-14T21:45:00.004-04:00

These instructions remind me of....

Put it in the comment and, I promise, you will win absolutely nothing. (BTW, there's no right answer...)

;)

Sophie's Drawers!

2011-07-11T09:46:00.002-04:00

Sophie has a thing for drawers, cupboards, and doors. She likes to open and close them. She never looks inside, she never takes anything out...she just opens and closes, opens and closes. I guess it's a control thing...??? Anyway, she's so damn cute when she does it...sorry if the video is a bit on the shaky side...

Sad dreams

2011-07-10T06:22:00.005-04:00

Sophie awoke this morning at 2:30 and has been up since. She has some cramping issues. Seems she and the Man caught some kind of bug...

Anyway, I was trying to not use the Gravol to put her to sleep, as she was calm and sweet, not agitated, just uncomfortable. By the time 5 AM rolled around, she had slipped into sleep, finally, and I was just imagining getting into my own bed beside her when she suddenly startled and her hands flew up in the air and she cried out...

My dreams are very upsetting!

Her eyes were over-bright and she was very agitated. She kept repeating...my dreams...and I asked her if it was a scary dream or a sad dream. She said it was sad.

I repositioned her and tried to comfort her, gave her, finally, the Gravol to help her relax...and she started, on her own, a very old prayer that I used to say with the girls, long before Sophie had her stroke...

Dear Lord,
Please protect Sophie from any and all negative influences
Regardless of source throughout the night.
Grant her deep and peaceful sleep, with beautiful dreams,
That teach her what she needs to learn...

And she stopped there.

Sophie can memorize and recall passages from almost anything...but she cannot communicate, for the most part, the thoughts in her head. It must be frustrating in the extreme. But...I found it somewhat amazing that, in her agitation, she chose to access an old prayer to find some comfort.

My darling baby, may all your dreams be sweet.

2011-07-06T22:00:00.002-04:00

So many things going through my head these days. Thank heavens for the blog, where I can empty it out before it explodes.

I have been having "rememberies" lately...or trying to anyway and failing miserably...of Sophie pre-stroke. This is because I have been honoured to be part of a conversation with someone who is dealing with immediate family whose young child has suffered a serious, unexplained, brain injury. This person reached out to me via my blog. The injury happened only a few short months ago and the group is reeling from it all...and putting one foot in front of the other, one day at a time and all the rest.

What the whole situation has made me think about is that weird thing that happens when your once "normal" kid becomes disabled. You have this very bizarre situation of grieving your child like s/he died...but still staring that same child in the face day after day. It is intensely difficult. I managed quite well at work most days until they did sing-along on Friday mornings and they would sing Sophie's favourite song, "Puff the Magic Dragon". I just couldn't make it through those times. I would burst into tears and leave the room and go fall apart somewhere private, remembering Sophie as she once was. Then I'd go home and see this new Sophie, who, at the time, was non-verbal, had crossed eyes, was on 20 hour tube feeds and basically lay in bed all day, barely responsive.

When a child actually dies, there is at least some sort of clear delineation of a timeline pre and post death (and I am not saying that is "easier" or downplaying that horrific pain). But when your kid is lying there in front of you all different, but somehow the same...it just fills you with all sorts of conflicting emotions. Should I be happy s/he's still alive? Is it bad if I want the former child back? Isn't this the same person? Would s/he better off dead? I don't know what to do with this person who is my child!!

Then there's always this nasty bit of hope that maybe the kid will somehow return to "normal" or "get better" with enough rehab. Some kids really do regain a great deal of their former abilities, but it depends on the nature and severity of the brain injury. It's amazing, though, how resilient false hope can be. I distinctly remember seeing the forms for "Assistance for Children with Severe Disabilities" sitting on the desk and saying to myself "We won't need that! Sophie will not be severely disabled!" And sort of waving the whole thing away with my hand, like that would make it true.

Then, over the years, you start counting how many were spent "normal" and how many disabled, until you reach that half way mark where the balance tips from "more normal time than disabled time" to "more disabled than normal". And then...then, you start to realize that you don't remember what it was like before and looking at old photos or video is surreal....

And that's where I've gotten to. I just don't remember Sophie as the "old" Sophie. She's this Sophie now. It's okay...you know..I'm not sad, but it's weird. Life is like that.

2011-07-05T06:00:00.004-04:00

Been up with the gal since 3.
This is the third day she is badly cramping.
The House rerun I watched to keep me distracted talked too much about marriage.
As I sip the last of my double shot iced mocha, I realize the milk in it had soured.
I'm in the middle of something I don't know how to fix.
I realize that I have forgotten how Sophie was before she was brain damaged.
It's 6 AM.
Ugh.

I know, I know...could be worse...I could be living in the Congo...

I am watching the sun rise.

Just a few FYIs

2011-07-02T09:17:00.008-04:00

Here is a nice little story. I really, truly don't get the fascination with royals...totally escapes me...though, admittedly, the woman's clothes (barring, of course, the British royals' propensity for hat wearing) are stunning...

Anyway, just for a quickie here, the little guy below was chosen to meet the royals. He has CP and is very active in his community. What I liked was this line from the mayor of Ottawa:

He was selected by Ottawa Mayor Jim Watson as one of two children who would "represent the future" of the Ottawa community at the historic event. (emphasis mine)

I hope that "the future" means a more accessible, accepting and supportive world for people with disabilities of all sorts.

Assisted suicide...is that not an oxymoron??

Bill Peace has written an exceptional post over at this blog, Bad Cripple, entitled "End of Life Discussions". It has garnered considerable outside attention. You may want to read it. I am very interested in all "assisted suicide" discussions. I am staunchly opposed to legislation that "allows" this sort of thing to go on (I used to be a supporter, you know). It is a slippery slope of the worst kind. The issue of pain and suffering is so subjective and so prone to the foibles of a population desperately uncomfortable with all things outside of "the norm". People have been killing themselves without assistance since the dawn of time. To give carte blanche to outsiders "helping" that process is dangerous, especially for our kids. It's all a matter of focus and political will. We need to put as much energy into finding ways to make life from beginning to end comfortable for those who are facing difficult challenges as we are putting into forcing this sort of legislation on the books.

I have had the pleasure of a few wonderful comments and personal emails sent to me in the last couple of weeks. Some stories are sad...others full of fun. I have been thanked, mainly, for the "honesty" of my blog (isn't that a nice way of putting it? hee hee). Someone even put an older post up on Facebook somewhere and the traffic from there has been tremendous! Thanks...whoever you are... I welcome you, new followers and lurkers. I know that some will like what they read and others, not so much (yeah...heard from one of those too)!! It's all part of the land of blog. In any case, it's quite a ride, this life with a severely disabled child. If you are looking for "happy-go-lucky" blogging, you might want to move on "toot sweet"!

This guy showed up when I searched "job interviews"
in google images...

The job interview...yes...how did it go? Very, very well, thank you! Though, they were looking for full time and I am not quite there yet...maybe next year...we shall see. Meanwhile...I await more information. They need supply help and I will gladly do that! In any case, it was nice to get out there and talk to some fellow Montessorians. The interview ended in a hug! Who can argue with that!?

As for my dear Sophie...life goes on! She's had two significant seizures today so far...one at around 2:30 AM the other around...ummm...later! Ha!! Man, I am so used to the whole thing I don't even take note of it anymore. She is, however, very groggy, partly due to the seizures partly due to the low pressure system we are experiencing here. It's hot, hazy and humid...crushing heat, and that always affects Sophie. Overall, though, things are good for her. She is able to express her sense of humour more and more. She's lots of fun. I hope to get a video up at some point soon.

Happy Canada Day!

2011-07-01T09:46:00.001-04:00

2011-06-27T11:44:00.007-04:00

Families with autistic children, parents who love their autistic children dearly, must endure much in order to live a normal life with their children, to be happy with their children to see them grow and develop to the best of their abilities notwithstanding their disabilities. The concerns and challenges of parents of autistic children are often dismissed contemptuously by scientists, health care professionals, educators, social workers ... and some involved with the justice system.
Harold Doherty, Facing Autism in New Brunswick

In his post, Harold goes on to a discussion of how some families have had their autistic children wrongfully taken from them. Provocative reading, but I wish to talk more specifically about that first line of his, quoted above....and you can insert the word "disabled" or "severely disabled" where he writes "autistic".

The bald truth of that sentence struck me. Society at large, when looking at someone with disabilities, does not consider the possibility of a life for them.

This is way different from "quality of life" issues. Yes, everyone and their dog (really) have views on that and they aren't usually shy about expressing them..that your kid would be better off dead, or in an institution or aborted because they are "suffering". Whatever.

But parents really fight an uphill battle when they dare to aspire to, and attempt to create a life for, their disabled kids. To society at large, it seems to fly in the face of common sense. Your disabled kid is just somebody you take care of...and preferably try to fix...not delude yourself with images of pleasant experiences, daily activities, or, god-forbid, even education or a job if that's at all possible. Of course, the older and the more severely disabled your child is, the worse this gets.

'Cause you see, people, in general, have a very narrow definition of what "a life" is, and it usually goes like this: you're born, you grow up following certain developmental milestones, get an education, try not to fuck up too much as a teenager, get a job, marry, have kids...rinse, repeat with said kids. Throw in a house, some booze and few vacations. That's a proper life. If you get rich and/or famous...all the better. Then you have THE life!

Our kids just can't do life like that. So...then...no life at all is the alternative? Really? Pretty much how the powers that be would have it, thank you very much. Why else would they make you fight tooth and nail for respite, to get into a neighbourhood school, to get and carry out a proper IEP, to have accessible extracurricular activities, to have a decent place to live once unable to do so at home? Hell, even doctors' offices...the one effing thing they think going to with our kids is actually appropriate...cannot properly accommodate them!

Let's face it. People were a lot happier when all our disabled folks were out of sight and out of mind somewhere in a big old building "cared for" by "professionals". Let's face it too, that creating a life for kids like ours costs money and doesn't really make money. It creates jobs, certainly, and they are a captive market for disability related products, but all of it has to be paid for by government and taxes. And we all know how people feel about that.

So...the punishment for being dependent is that you are not deserving of a life outside of basic care, and you should be damn thankful for even getting that much. Furthermore, really, why waste money on kids who don't really know the difference about what is going on around them anyway...

It is, in the end my dear people, as sad commentary on the state of human affairs when we still operate under the notion of survival of the fittest, that there is only so much to go around. It is conveniently forgotten by all but a few that disability looms on the horizon of every single person that draws breath. When we choose to deny quality supports and dignity to our weaker members, we are, in effect, digging our own graves, putting the final nails in our own coffins, doing unto others, what, ultimately, may well be done unto us.

Skype...how do I love thee? Let me count the ways...

2011-06-25T09:35:00.006-04:00

Oh yeah...Thursday was "Skype" day. I was the happiest person on earth. I got to spend hours talking...no, laughing... with a couple of blogger buddies. It was unbelievable...the technology IS unbelievable. I had people in my living room...but they were miles and miles away...a country away!

As much as it was incredible to just talk to some human beings that weren't respite workers or therapists (the convos ranged from poop to podcasts), the fact that these people are knee deep in the land of disability is what put it over the top of amazing for me. They "get it"...

There were several interruptions in the conversations: grabbing drinks (not booze!), wheelchair techs, seizures (!!), chair to bed transfers and lunch, snacks, shifting positions, (in wheelchairs...what ARE you all thinking!! Tsk...) No one even blinked.

None of it mattered..or was out of the ordinary...or was received with pity or "awwwwww, poor you guys" or revulsion, or anything like that. It.was.awesome. People who get it...I will never get enough of it.

Look out Skypers...I'll be back!

Oh...and btw...I have a job interview at the nearby Montessori school on Tuesday...more on that after the interview. And, just so you know, my resume was done up in Comic Sans....(sticks tongue out at Single Dad...;)).

No, it's NOT the same.

2011-06-19T09:44:00.006-04:00

You know, there's a blog that I don't read. It's a wonderful blog, but I don't read it because it's just not my sort of blog, but mainly, I don't read it because always, for some reason, that blog attracts sanctimonious types that come and put their two cents in the comments section...and I always read comments. I get so pissed that, well, I thought, "You know Claire, you could just stop reading the blog....". So I don't read the blog...but I did today...because, well, because. And...there it was...a stupid ass comment.

Someone is sending their lovely child to a "special needs" summer camp. AWESOME! It sounds great. That someone checked it over really, really well. That someone's child will be going off to camp. Imagine how great that is for the kid. That someone, though, is nervous about sending their "special needs" child to the camp. Of course!! I sooo get that!

But then comes the comment to the effect of...(and I am paraphrasing) "How could your child survive without you for a week (good natured sarcasm)! You know, being nervous about sending a kid to camp is typical to ALL moms!" Complete with little smiley face...

;)

Hey...commentor...take that smiley face and put it where the sun don't shine, okay. Sending a "normal" kid to camp and sending a disabled kid to camp IS COMPLETELY DIFFERENT.

Just for your edification....

When it comes to disabled kids, there are worries about medication...proper dosage, proper delivery, proper timing. There are greater worries about medical crises...we're not talking broken limbs here...but heart problems, seizures, breathing issues, spasticity, disorientation, sensory overload, over-the-top "behaviours", eating issues, sleep problems, over-heating, under-heating.... There can be no one-size-fits all programming because each child's medical issues are so unique.

There are worries about supervision, because many disabled kids cannot adequately express themselves to say that they were not properly supervised, that they were abused or mistreated, or worse. There are worries that the child's intellectual/physical abilities/challenges will be understood and appropriately accommodated so that the child is both comfortable and comes away feeling like a success.

This is more than mere separation anxiety, of learning to "let them go" so that they can "grow up". These are concerns that stand outside the norm. It's just not that simple and I deeply resent that someone would trivialize that. Sadly, care outside the home is always a big risk taking adventure for us. There aren't many good stories out there about how our kids are cared for by strangers, even though I know there are many good people trying to do the right thing.

In any case, I am going back to my original position: I am not going to read that blog.

Feeling the chicken love.

2011-06-18T11:45:00.006-04:00

Sophie loves chickens. She loves the sound of the word. She will sometimes, with her pipey little tone, out of the blue ask anyone close to her..."Are you a chicken?" (We also get asked: are you a pickle? or, are you a potato chip?...the other night she asked me the pickle and chicken question in close succession, so we came up with "picken" and "chickle" to cover both possibilities....and I wasn't drunk...much as that has a certain appeal...but I digress...love those dots, eh?...)

Anyways, just thought I would point that out to you. And in case you don't believe me yet there is

The chicken quilt...

The chicken calendar...

Kinda like a morning photo of you all, right?

The recent chicken artwork...(notice the hearts...)

Never mind that in fact, chickens are smelly, messy affairs and that I hate them...and NO, we never had chickens on our farm...we were "animal-less" farm...plants only...but that I love to get eggs out of chicken roosting boxes...and that my sister once took a chicken foot to school with the tendons and all...and I know this isn't about me or her, right.

Yeah...Sophie loves chickens.

Couldn't Resist....once again...

2011-06-17T11:54:00.004-04:00

It's the assumption that bothers me.

2011-06-15T12:00:00.000-04:00

You have read more than a few of my comment shredding posts. You know, the ones where I nail some poor "anonymous" with the facts and a certain amount of vitriol. Sometimes, I am not certain this is the right way to go. I suppose I could use these things as "teaching moments"...and would be more likely to do so if the individuals involved used their names. I can, however, be a hard, hard woman. Though my compassion toward human ignorance has grown by leaps and bounds over the years, sometimes, I just cannot find my way clear to being kind. Sometimes, I just want to rip someone's head off.

In retrospect, it is one very particular viewpoint that seems to push my buttons more than others. I figured that out the other day while reading the many comments that followed a 10 page article in the NYT about the conjoined twins in Vernon B.C. (See here.) After any article that attempts to address issues regarding children with "special needs", there are always those who talk about how such children should be aborted in the first place, or left to die soon after birth, without using any extraordinary measures. Now, it's not the issue of abortion that bothers me, and sometimes I too think extraordinary measures are questionable in some cases. What truly gets to me is the assumption that somehow, when it comes to our disabled kids, we parents should have an easier time of "letting go" of them, then say "letting go" of our non-disabled kids.

I find this attitude offensive in the extreme. It highlights the fundamental issue that disability activists rail about constantly: that disability somehow makes a person less than human.

People on the outside looking in, pity us at best and hate us at worst because our kids are an economic/resource drain. If they aren't being all out crass calling our kids financial liabilities, they attempt to appear kindhearted by couching their ignorance in the language of "suffering". They believe that they are forward thinkers in that aborting or allowing our kids to die will alleviate their suffering. They are compassionate in the extreme, these folks and laud "parents" who abort or make the terrible decision to allow their newborn to die as making the greatest of sacrifices and expressing the highest form of love. The rest of us, well, I guess we're selfish as hell and just plain stupid to boot.

The real thought process here is thinly veiled: it is those on the outside who cannot tolerate our children's imperfections and their demands of society. It is they who are uncomfortable with how our kids look, act, sound. They don't like the sacrifices we make...it makes them look bad when they complain about their relatively minor problems. Even deeper, though, is the feeling of "they shoot horses, don't they?" Indeed, never an article about disabled kids goes by without some idiot comparing them to dogs or family pets. "We put down our sick dogs so that they don't suffer." As parents of kids with severe disabilities, we are supposed to apply this sort of "sang froid" logic when it comes to our kids too. After all, our kids are suffering and we should just "let go" and alleviate that, in the name of altruism. Furthermore, we should feel less pain at their deaths because, after all, they're retarded and not really loved as much, right?

The sad part is that I am not exaggerating. I have read these very sorts of things in newspaper and magazine comments. I have read lines stating that there would be "an appropriate amount of mourning" for a disabled child's death..and that the parents should then move on and quite simply make another kid. I have had blog friends comment on personal experiences with strangers remarking just where such children belong...out of sight, out of mind, preferably. There are far too many out there who believe that the very deep "flaws" of our children must somehow mitigate our love for them.

The death of a severely disabled child does indeed involve a complex interplay of emotions. No question, if your child has suffered tremendously, there will be the sense that your child is forevermore relieved of that pain. There has to be, too, some personal relief. The extreme demands of care are lifted. I have heard of parents feeling a combined sense of grief at the loss and guilt at the relief.

But the LOVE, people, the love remains unmitigated by any of these things. To imagine that somehow our kids are easier to "let go of" because they are disabled is utterly beyond my comprehension. But I guess that is because I know what it's like to care for someone so fragile and yet so powerfully capable of changing lives, not because of what they can or cannot do, but because of who they are.

Once every 10 years, I go out.

2011-06-13T09:47:00.008-04:00

Downtown Stratford

Well folks, it actually happened. I had a an overnight stay, away from home. The first one in ten years. Absolute fact. It's been that long since the universe felt it was okay to let me out to play. Since you are all still out there, apparently "tous sains et saufs", the world did not come to an abrupt end as a result of my excursion.

I wasn't going to write about it, actually, thinking that, maybe, it wasn't relevant. On the other hand, this really has been how things have developed around here, and it relates, in many ways, to my daughter's disability. I know that many of us have curtailed our "outings" significantly since our children came into being.

In any case, I was allowed out on my own recognizance from around 10AM Friday until 5PM Saturday. I booked myself in a boutique hotel in Stratford, if you can imagine. I went back "home", or the only place other than where I grew up that ever felt like "home" to me. I had no real plans other than to meet with one person at the farmer's market on Saturday morning, and to behave like a tourist...only slightly less stupidly.

This lack of planning ended up turning into the greatest of gifts. On Friday before I left town here, I decided to drop by the Montessori school where I taught when I was in London. My former co-teacher now owns the school, and I was testing the waters as to what might be available work wise. I expected to be there for about 15-20 minutes, shoot the breeze and carry on out. What ended up happening was that I was unwittingly drafted into one of the classrooms to help with craft time, for about 45 minutes.

I had forgotten.

I had forgotten about just how much the little tiny children feed my soul. They are marvels of acceptance and of raw perfection. Upon entering the classroom I was given a mildly suspicious once over, but once introduced as "Miss Claire" and indicating my willingness to assist with any craft related train-wrecks, I was swept up into their little worlds. I helped tiny hands with tricky tasks, insisted on the word "please", and was otherwise treated as though I had been there since day one, in a classroom made up almost entirely of boys...and two tiny, doe-eyed girls. It was heaven, pure and simple. Time stood still. I was at peace.

I ate lunch in London and drove off to Stratford...and decided, on the fly, to go visit the school where I taught in Stratford.

Once again, the miracle. I knew all the teachers there and all of them had been there when Sophie had her stroke. They knew her both pre and post-stroke, then. There is a garden at the school dedicated to her, and, apparently, they had just that morning been discussing who Sophie was exactly with the children.

It was Friday afternoon in June and, typically, things sort of "loosen up" at the end of a school year. The kids were doing nothing in particular and after hugging and being hugged by everyone in sight, I was welcomed into a classroom, this time as Mrs. Roy, and slid into the role of Montessori teacher.

This group was a bit older and a balanced mix of boys and girls. They were just as accepting of my entry into their environment, however, and once again I was in awe of that feeling you get when unconditionally appreciated for just being around. I was sat on like a comfy chair, another loved my tattoo and enthusiastically noted that his Dad had one "just like that", on his belly, apparently. He rubbed my arm. I was called on to assist with impossible tasks. One little gal, upon overhearing that my name was "Claire", cried out, "My name is Clara!! It's almost the same!! And I know a baby named Claire!!!". She had huge bluish eyes and instantly became my best friend, bonded over the "almost the same" of our names. All I could think of was that life was just about perfect.

I also got to see some of my former students all grown up. Of particular note was (were?) "the twins". These girls, now tall, lithe and self-assured, I had held in my arms, at the age of two and a half, screaming bloody murder for over an hour, as they attempted to cope with the sudden loss of their mom and home routine. Their classroom antics became legendary.

My hotel room

The rest of my time out was mostly spent walking around and hanging out in my fab little hotel room which greeted me with some in-house baked chocolate cookies, two apples, and all the water, tea, coffee you could drink. The king size bed accommodated me perfectly from every angle I lounged on it. I watched TV and was actually able to follow a show from start to finish, without interruption. The next morning I got up early, and went over to Balzac's to get my perfect double shot espresso mocha and sat, reading what looked like a very impressive medical journal (and some of you out there have a copy). Breakfast with my friend was paid for by the hotel voucher, as was a lovely piece of chocolate from a chocolaterie down the street. The local kitchen shop had me enthralled...oh boy, do I love kitchen stuff.

I actually sat here...exactly!

At times, the whole situation felt bizarre in the extreme. It was weird, plain and simple, to not have to worry or watch over another person for a few hours. Of course, it was a good thing to do, and, hopefully, I will not wait another ten years to do it again.

2011-06-09T22:10:00.004-04:00

If you aren't Canadian, I wonder if you know about the young parliamentary page who "protested" with a "STOP HARPER" sign during a parliamentary session. Lots of ink was spilled over that incident, but the Toronto Star put out a piece that she herself wrote. It is an excellent article...and I reprint it here for your edification. This gal is going to go places...we need to be more like her! Rock on Canadian girl!

Why I did it: Senate page explains her throne speech protest

Brigette DePape

I am moved by the excitement and energy with which people from all walks of life across this country greeted my action in the Senate.

One person alone cannot accomplish much, but they must at least do what they can. So I held out my “Stop Harper” sign during the throne speech because I felt I had a responsibility to use my position to oppose a government whose values go against the majority of Canadians.

The thousands of positive comments shared online, the printing of “Stop Harper” buttons and stickers and lawn signs, and the many calls for further action convinced me that this is not merely a country of people dissatisfied with Prime Minister Stephen Harper’s vision for Canada.

It is a country of people burning with desire for change.

If I was able to do what I did, I know that there are thousands of others capable of equal, or far more courageous, acts.

I think those who reacted with excitement realize that politics should not be left to the politicians, and that democracy is not just about marking a ballot every few years. It is about ensuring, with daily engagement and resistance, that the vision we have for our society is reflected in the decision-making of our government.

Our views are not represented by our political system. How else could we have a government that 60 per cent of the people voted against? A broken system is what has left us with a Conservative government ready to spend billions on fighter jets we don’t need, to pollute the environment we want protected, to degrade a health-care system we want improved, and to cut social programs and public sector jobs we value. As a page, I witnessed one irresponsible bill after another pass through the Senate, and wanted to scream “Stop.”

Such a system leads us to feel isolated, powerless and hopeless — thousands of Canadians made that clear in their responses to my action. We need a reminder that there are alternatives. We need a reminder that we have both the capacity to create change, and an obligation to. If my action has been that reminder, it was a success.

Media and politicians have argued that I tarnished the throne speech, a solemn Canadian tradition. I now believe more in another tradition — the tradition of ordinary people in this country fighting to create a more just and sustainable world, using peaceful direct action and civil disobedience.

On occasion, that tradition has found an inspiring home within Parliament: In 1970, for instance, a group of young women chained themselves to the parliamentary gallery seats to protest the Canadian law that criminalized abortion. Their action won national attention, and helped propel a movement that eventually achieved abortion’s legalization.

Was such an action “appropriate”? Not in the conventional sense. But those women were driven by insights known to every social movement in history: that the ending of injustices or the winning of human rights are never gifts from rulers or from parliaments, but the fruit of struggle and of people power in the streets.

Actions like these provide the answer to the Harper government. When Harper tries to push through policies and legislation that hurt our communities and country, we all need to find our inner activist, and flow into the streets. And what is a stop sign after all, but a nod to the symbol of the street where a people amassed can put the brakes on the Harper government?

I’ve been inspired by Canadians taking action, and inspired too by my peers rising up in North Africa and the Middle East. I am honoured to have since received a message from young activists there, saying that we need not just an Arab spring but a “world spring,” using people power to combat whatever ills exists in each country.

I have been inspired most of all by Asmaa Mahfouz, the 26-year-old woman who issued a video calling for Egyptians to join her in Tahrir Square. People did, and they together made the Egyptian revolution. Her words will always stay with me: “As long as you say there is no hope, then there will be no hope, but if you go and take a stand, then there will be hope.”

Brigette DePape is a recent graduate of the University of Ottawa. She has started a fund to support peaceful direct action and civil disobedience against the Harper agenda: www.stopharperfund.ca

One reason acupuncture is cool...graphic image...

2011-06-08T20:59:00.003-04:00

Okay....below is a photo of Sophie's abdomen, where, you can see, she has a number of scars from all the distal end shunt revisions she has had (there are others not shown in this photo).

As you can see, around the top line scar, the acupuncturist has placed 4 needles. You can see the scar is turning red. It wasn't red until the needles were in for about a minute. Then, the other cool thing was that one segment of the scar sort of "puckered" a bit. You might be able to see that, at the very top of it. (Grossed out yet people??) After a few minutes, it un-puckered and flattened out! See...this is cool to me.

The point being...scar tissue interferes with the flow of "chi" or "energy" according to Chinese medicine. Once there is a scar, the energy can block there. It will eventually find a way around it, but the point is to encourage that re-directed flow to move smoothly around the scar. Is that just not the coolest thing? But I saw this happen!

Neat-o!!

Anyways...it helps the scar tissue soften and relieves any adhesions. Yay! Yeah...I know...I'm weird like that.

Speaks for itself

2011-06-08T07:13:00.001-04:00

2011-06-06T16:15:00.004-04:00

The black locust trees are in full bloom. They are very tall, enormous trees around here. Old, beautiful. They fill the air with a sweet, heady scent. The flowers are edible. They taste of honey. On my walk today, I ate some and sent one blossoming tendril down the river imbued with a prayer.

Therefore I tell you,
whatever you ask for in prayer,
believe that you have received it, and it will be yours.
Matthew 11:24

Questions for you, my friends...

2011-06-03T14:28:00.002-04:00

Just a couple of quickie questions I would like to ask you all out there...

Do any of you use motility drugs for your kids? If so, which one(s) and have you seen any significant side effects? Benefits? Lesser of evils? (motility drugs help food move along the digestive tract...and if you need to ask, you really can't answer my question)

Also...since most of you are familiar with "briefs" aka "diapers" you are also familiar with red butts, diaper rashes and all that crap. I have a fairly effective arsenal but I would like to hear how any of you have dealt with the problem when it hits big time. Any magic potions? And yes, I know all about "letting the air get at it"...I know what to do, I just want to hear how others handle it. We can all learn something!

Thanks all you awesome peeps!!! Use the comments for answers because I want everyone to read them, but if you want you are welcome to email as well.

Random + Sophism

2011-06-01T11:41:00.004-04:00

You know how some younger ladies like to wear sweat pants with bold words written across their backsides like B.U.M EQUIPMENT or UNIVERSITY OF WESTERN? You know? Right? Yeah, so, why not just write LOOK AT MY ASS PLEASE and be done with it? I want a pair that says FUELED BY ESPRESSO.

Dark Belgian chocolate covered macadamia nuts...only two in a package...are sold at my local green grocer's for .99. They are awesome. I have been known to knock over little old ladies in the one check out lane that has them, to grab a package (and then run back to my lane).

I eat these things back in the car. By myself. Like an addict. One day, whilst doing this, struggling with the wrapping, I noticed a boy around 13 years old, sitting in the car beside mine. Alone. He was repeatedly banging himself rather violently back into the seat.

Bang, bang, bang, bang, bang......bang, bang, bang, bang, bang.....repeat.

I looked at him...likely intellectually disabled, probably autistic. Why did I think the intellectually disabled bit? His mouth. Mouth breather. All our kids are mouth breathers. Then their teeth stick out because of that. It's connected.

Bang, bang, bang, bang, bang....

I wondered why he was alone in the car. I had been in mine for at least five minutes and had not seen anyone walk away from the car prior to my getting into mine. I started getting all "high and mighty"...then I thought...the kid was probably happy in a quiet, self-contained car space. His mother/father probably knew that. They probably knew he wasn't a flight risk. They likely knew he liked his stim. They probably knew a lot about the kid that I didn't know. So, I held my judgment. Chocolate makes me mellow.

The other night, just before falling asleep, Sophie sang this little ditty to the tune of "Happy Birthday"...

Happy glaaaad,
Happy glaaaaad,
Happy glaaaaaaaad,
Happy glaaaaaad,
Mummy...I have a word to say to you. You are a very good woman.

****snifffffff**** (and I wasn't feeling like a particularly good woman that day, let me tell you)

This morning...

Oh boy, oh boy, oh boy, oh boy,
Do I ever love you.

Oh, man. I love that kid. I am a very lucky woman.

Yeah.

2011-05-30T04:50:00.002-04:00

Kid woke up just before 2...it's 4:50 AM now and she's still awake...after two doses of nerve combo, 2 homeopathics, melatonin and Gravol. Thought I would take a sanity minute and write a post.

A POST.

Ha!!! Funny eh? Oh yeah, things are really funny after a while....

;-)

Have a good day.

A bit of fun

2011-05-28T13:45:00.002-04:00

We did this today with Sophie. You can tell that the nurse (a good one) and I are far more excited by this process than is Sophie. But it is such a cool effect, I thought some of you might like to do it with your child. The nurse found it on YouTube.

Oh, by the way, using "natural" dish soap is not as good as the industrial strength stuff.

Training...

2011-05-25T08:33:00.008-04:00

Too dramatic??

Training a new nurse today...I can usually tell within 10-15 minutes whether someone is completely wrong for the job.

WRONG FOR THE JOB

I hate training....did you get that sense?

**now she's singing "for she's a jolly good fellow" to Sophie...why? Not a fucking clue. Just kill me now.**
**I hate it when people say "good effort!!" because, you know that just means, "if you were normal, this could look great, but, since you are a retard, we will have to accept this as okay."**
**Fuck...she's a "questioner"...question after question after question...Sophie has no time to answer....argh!**
**The humming! OMG!! Stop the humming!!!**

Birthday

2011-05-24T15:16:00.002-04:00

Today is Sophie's 17th birthday. She had to be sedated on Gravol....I just took some shots from the Flip camera...the good shots...but the rest of the video is her just freaking out, completely out of control...it's just pitiful. We couldn't open presents...maybe tomorrow.

For the next year, I will be getting information and paper work to transfer her to adult services. That's what it means to be 17 in this world.

Happy Birthday, Sophie...I guess...bittersweet, these birthdays...bittersweet. But she is still my most beautiful, most amazing, most perfect child.

I lost a reader to the Rapture...and other stuff

2011-05-22T06:51:00.006-04:00

My blog is on his cell...

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Well, folks, I'm still here...and so, it seems, are most of you. So, either we're in for 6 months of hell on earth and then Armageddon, or, well...isn't that kinda how things are right now anyhow? Kinda hellish? Well...I lost a reader, a blog "follower" sometime yesterday. I am certain it was due to the Rapture. Certainly not because they read something that offended them on the blog (like a shredded anonymous comment?) or food porn. Nah...more likely just ascended after reading one of my more enlightening posts, right?

Either that or the fact that I associate with Big Daddy's blog is finally starting to hurt my ratings....How does Lynn manage it?

Lynn..."coping" with images of Big Daddy in her head

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One particularly trying morning with Sophie...and by morning I mean around 3 AM...well, after a while I finally turned on the computer as I am wont to do as a coping mechanism and distraction for Sophie herself...

Lo and behold, a little green button is shining beside, yes, another, in my time zone, up at the 3AM hour, parent of a severely disabled child. Between Sophie issues, I pop over a short, silly little email...and then get a chat call...we chat for a few minutes, tell why we are up (or why our kids are up), wish each other well. How awesome is that!!

My chat was just as scintillating too!

Again this morning...I'm up WAAAAYYYY early...notice an email...send off a quick smart ass remark...and get a message back. Wow! Someone NOT in my time zone, for whom the hour would be around 3AM! (((((hugs)))))

Let me tell you, there is nothing like that sort of magical communication at those ridiculous hours. Nothing like having people who get it, right then and there. The immediacy of it is mind boggling...and wonderful. I love computers! I love the internet! I love my peeps! Now there's some rapture for you.

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How's Sophie, you ask? Check this out....

Yeah...so, like that, half dead, hardly able to keep her eyes open, or...her eyes popping out of her head, and she barely blinks and stares obsessively at the ceiling fan. We had another little happy trip to the emergency department last week...in at 4, out by midnight...her poop is bright orange (yes, bright orange...TMI, d'ya think?). Weird.effing.stuff. So....yeah, she's likely going through some sort of growth "spurt" for lack of a better term, and her body chemistry is way, way off, and her brain is buzzing. Riding the wave, folks. Just riding the wave.

Have a happy last day on earth!!!

2011-05-21T06:06:00.004-04:00

BWAHAHAHAHAHAHAHAHAHA...!!!

Sorry...couldn't help myself...

1Jesus left the temple and was walking away when his disciples came up to him to call his attention to its buildings. 2“Do you see all these things?” he asked. “I tell you the truth, not one stone here will be left on another; every one will be thrown down.”....

4Jesus answered: “Watch out that no one deceives you. 5For many will come in my name, claiming, ‘I am the Christ,^a’ and will deceive many. 6You will hear of wars and rumors of wars, but see to it that you are not alarmed...

36“No one knows about that day or hour, not even the angels in heaven, nor the Son,^f but only the Father. Matthew 24.

2011-05-19T11:57:00.002-04:00