Monday, December 21, 2009

A Letter to Remain Unsent..

Well it's been a while since my last post.  I've had a dilemna.  I had a great urge to write about a rather unpleasant experience that I had, but I do try to keep the feel of this blog positive.  I do not want to come off as bitter or angry, so time to had elapse to take the sting from my wound.  Because, bitter, and angry I was.
So, after a week of thinking about what I should have said to the woman that gave my son the look of death mingled with disguist during a recent trip to the hospital... I have crafted instead a letter which will remain unsent.  Written many times in my head throughout he past week...I've decided to edit out some of the nastier, not healthy for anyone parts...
Dear __________,
You I am sure will not remember the incident last week at the hospital, when, seconds from the exit, you overheard my son become very upset.  Nor do you care why he was upset, or have any idea about the multitude of factors that led to his crying and shouting on the hospital floor.  However, in exagerated looks meant to be noticed, you conveyed to your accompanying daughter your disgust at the behaviour you were being forced to witness.  Meant for the terrible parent of this screaming child to see.  Next, pausing with your hand on the EXIT door, yes, you were mere seconds from freedom of this event, surely you could have sucked it up and endured,instead you looked over your shoulder, and shot my little 5 year old a look that screamed your disguist, your intolerance, your lack of empathy, and certainly your lack of awareness as to his exceptionality.
Why did you do this?  Perhaps to prove that this is behaviour that YOU would never condone..oh, my goodness, no.  Perhaps you thought he just needed a stern look to make up for the oh so apparant lack of parenting.  Or, perhaps, you're just not a very nice person, and you feel the need to busy yourself with other people's lives, assuming that your opinion of a situation is of any relevance or importance.
Maybe you just take for granted that you have a typical child, and never had to endure these moments.   But you see, something strange happened.  Instead of being embarrassed by Aiden's behaviour, I was embarrassed by yours.  Imagine! 
You see, you didn't look at me, you were too busy throwing daggers into a small boy's face.  But, me, I saw yours.  And I know you, and you know me.  And I know what you do for a living, and I certainly know that you would be expected to be a person of tolerance, and patience.
So, I 'll keep your name withheld, such gossip would surely feel good momentarily, but Iwould come to regret the pettiness of it all prety quickly.
And, besides, I try to be a model of civil, respectful behaviour.
And, who knows...I don't know the events that led up to your appalling behaviour either.  Perhaps you just received terrible news..perhaps something horrible is going on in your personal life.  That is why this letter will remain unsent.

And now, perhaps after a week of brooding, I can move on.

Tuesday, December 8, 2009

Little Boy Lost

One Nova Scotia family is currently living through every family's worst nightmare.  They have lost their precious 7 year old boy.  Little James Delorey followed his family dog from his backyard, wandered into the woods, and after surviving 2 long, cold nights, was not able to bounce back from his injuries.  Poor little man.
We feel sad for any family that endures that which we cannot even imagine.  But, for autism parents, the scary thing is, that this is one tragedy we can imagine.  Our kids wander.  Our kids will open the door, and walk right on out.  Without the casual shout over their shoulder of, "Mom, I'll be in the yard."  Many children, like little James cannot even speak.  Others, like my own, have full speech, but hampered communication.  And hampered understanding of what information you need to share with your family.
This little boy's passing jolts the entire autism community.  All of our 'what ifs" have been confirmed.  Your child can get lost.  Your child may not respond to their called name.  Despite all of our best efforts, horrible things can still happen.
The news of James's passing came to me right at the heels of a rather embarrassing public meltdown.  I was agitated, I was annoyed, I was exhausted.  I was feeling defeated.  And then I heard.  And perspective came to me hard and fast.  I'll hold both my babies a little tighter tonight, and kiss the tops of their warm little heads just a few extra times.  And I'll be thankful for them.
Little prayer for you...a peaceful rest my boy.  A country cries for you.

Wednesday, December 2, 2009

The Mom in Me

I'm not the Mom I thought I would be.  Life with my young children is not at all how I envisioned it.  How I dreamed it, and played it out since my childhood games of dolls, and countless hours "playing house".. 
I'm crafty, I love to bake, I'm happiest when I'm at home, I enjoy family field trips, and celebrating all seasonal activities.  All of these things seemed to me like really good Mommy ingredients.
But, as it happens, these aren't things you can do on your own. 
Don't get me wrong, I try.  I try really, really hard.  But it isn't how I thought it would be. 
My kiddies do enjoy baking, and they certainly enjoy doing crafts.  But it's not the happy go lucky, all fun, no hassle activities I thought they would be.  It's really hard to do a highly structured craft, or play a rule-ridden board game with a little boy who has all his own ideas.  Al the time.   There comes a point when it just stops being enjoyable, and you find yourself expending sooo much energy on getting him to follow the directions, and to stay focused on the activity, that it's not fun anymore.  It's work.  Plain and simple.
And all the things I thought we'd do together!  I never dreamed how hard it would actually be.  The library....maybe not.  All that keeping your voice quiet business is sure to cause some issues.  The Museum...all that no touching, just looking is bound to cause a fuss.  Family get-togethers...where all of the adults congregate and chat, and I'm stuck with all the kids on supervisor duty.  Becuase it's different for me, I can't trust that everything will be fine...because everything isn't fine all the time.  Stuff happens, and I've got to be there. Simple lessons, I have to find ones where the parents can participate, or at least attend, because he's just not going to just follow along with the group.  If he finds something more entertaining, he'll be oblivious to the fact that there even is a group.
However, I still do things.  We still go lots of places.  But it's different.  I'm broadening his social sphere, I'm exposing him to things, I'm making sure he gets lots of practice in different environments.  In short, they're not just field trips, they're therapy.
And our days at home together aren't the glorious sun-filled hours I envisioned they'd be.  Some days I think I'm going to stroke...there is just so much to manage that I can't help but feeling a little defeated.  Like, for example, at 3:30 this morning when he came creeping into our room, and it was painfully obvious that he was up for the day.  And that was that.  He's not the kind of kid who's going to play quietyly in his own room while we slumber on.  Not going to happen.
Parenting is harder than anybody believes it would be.  But sometimes I'm still shocked that I have a child with behavioural issues. Me!   I was such a good, compliant kid myself.  I thought I'd do everything right, and that my children would be perfectly behaved.  Ha.  How arrogant of me to think myself immune.  I'm not immune, I'm no better than anyone else, and my chances of having a special needs child were just as high as anyone else's all along.  I just didn't think it would happen.  I guess I didn't think that would be fair.  Fair!!!   Another illusion.
So I'm not the Mom I thought I would be.  Truthfully, I'm better.  It's not as fun perhaps, but it is definately meaningful, and when you are rewarded by hugs, kisses, happiness, small signs of improvement, it's all the sweeter.  I get it now.  It's not about the children you thought you'd have.  It's about the ones you hold in your arms.  And whatever they need, whatever they enjoy, that's the Mom I'll be.