Thursday, March 25, 2010

No One Else Loses Sleep

I've come to realize that no one else loses sleep about my boy.  When my husband and I leave a doctor's office, or hang up a phone, us, and our life, gets placed in a folder, on a desk, or tucked away in a filing cabinet. 
Access to services have long wait lists, and even when you finally get to the front of a line, times between appointments and follow up appointments can be long, lonely stretches of road.  By the time you get back in an office, you have to reintroduce your professional to the child you now have...older, changed...different. 
I've spent the last couple of days on the phone.  I've been trying to get my follow ups in order...thinking that it just cannot be right for so much time to go by.  For us to be left dealing with issues, that surely somebody must know how to help us with.    As women, it often goes against our nature to be persistant, to speak out, to just try and have somebody to hear us.  Somebody to help us help our children
So, finally today, I'm feeling mildly successful.  I have 2 appointments coming small feat.  In a system that is so backlogged, it's so important to make your presence known.
My boy isn't a client to me, he's not just one of the "ASD" kids I service...he's not a subcategory of patient.  He's one of two.  How could my sun and moon ever fall through the cracks?  It would be impossible for me to forget that this chunk of my heart needed I have to serve as the reminder.  Because little boys don't make phone calls, and it's very easy to get lost in a jammed up, overworked system.
So sleep well Governemtn of Newfoundland and Labrador.  Pull your blankies up tight to your chins and slumber on... But just be warned, when you arise in the morning, autism parents are going to be expecting you to work for us.  Autism parents spend many sleepless nights, tossing and turning....vowing that something must get done, to rectify a pathetic, sparse, non-functional level of service.  And in a province with the highest rates of diagnosis...our voices may just ring loud enough to get heard.

Wednesday, March 24, 2010

Both Sides Now...

Welll, to say I've had an eye opener would be an understatement.  Little Miss Margaret turned the big 2 last month, and I realized that the sweet little girly needed something of her own.  So for the past couple of weeks I've taken her to a gymnastics class.  And she loves it.  Now, I'm not new to gymnastics.  t just happens to be himself's absolute favourite activity, on the planet.  He loves it, he doesn't do it, but he adores it nonethless.  Prior to now, my experience has been registering Aiden in gymnastics, paying the fees, and then watching him play with those great big stuffed blocks while the other kids followed instructions and honed new skills.  Now, that's not to say he didn't hone new skills, he'd go home and perform all of the new tricks, just not there.  He was too busy.  Blocks you see.  Towns to build, harbours to construct, etc.
Taking little Miss was a completely different experience.  When she wanted to jump on the big trampoline I felt a familiar have to sit and wait and take turns on that thing.  Always was a issue for me in the past...but guess what.  No issues.  She sat and waited for her turn.
When other kids took toys she was playing with (they're all quite young) she just moved on, or waited for it to be returned.
And at the end, when they took out the parachute, I really had to fight a familiar urge to leave just a few minutes early.  Just avoid the whole thing.  But, nope, you guessed it.  No issues.  She took a piece of parachute in her hand, and shook it when told to do so.  "Make little waves." Yup.  'Make big waves!".  Sure thing.  'Okay boys and girls, everybody sit in the middle of the parachute, and we'll give you a ride!".  Oh no...flashbacks imagery of himself rolling onto others, getting overly excited flicked like a slideshow in my mind....but, she hopped in, sat with the other kids, and simply enjoyed the ride. Phewwwww.
So, now I know how it feels.  To go places, relax, and enjoy.  To realize that activities can actually be the fun they were intended to be.  To be one of those parents who can just go and do things.
Except it's a bit of a farce.  Let's face it, I had to pretend I was taking her to a doctor's appointment, so he wouldn't be heartbroken to know that gymnastics exists without him.  And, I'm the whole time comparing their behaviours.  And, I'm looking at it all now, and thinking back to when he was  two, and undiagnosed, and how overwhelming it must have been for him..I took him from playgroup to playdate, to activities, with nary a thought of how stressful it was for him.  And here's Margaret, joyfully joining in, oblivious to how easy she has it.
But at least I get a chance to sit and enjoy.  Watch her playing so well, having so much fun.  Parenting this typical child is in many ways daunting to me, sound  strange? Just think about it,  I'll have to step back from her, she won't need me to hover, to protect, to intervene.  I'll get to sit in parent waiting areas, drop off and pick up, pack lunches and kiss goodbye.  All unfamiliar territory to me.
Being her Mom is going to be different....but you know me, I embrace differences.

Saturday, March 13, 2010

The Answer will Always be Yes

"Mommy, do I have beautiful eyes?"
"Yes, you have beautiful eyes."
"Mommy, do I have beautiful eyes?"
"Yes, you have beautiful eyes.  The answer will always be yes.  You will always have beautiful eyes."

Beautiful, blue eyes.  They sparkle, they light up, they often look pensive.  They often squint with laughter.  Beautiful, beautiful eyes.  Eyes that see the world a little differently than most.
I remember when you were first born, how those beautiful eyes locked in on mine, and then moved from me to your daddy and back again.  Right away we knew that those were beautiful, beautiful eys.
The times when I needed you to hear me, before we understood.  I worked so hard to get you to look at me with those beautiful, beautiful eyes.
And times when those eyes look scared, overly concerned...and I just want to make them shine again. 
Your eyes that scan the world, always on the lookout for unseen, but percieved dangers.  Real to you.

"Mommy, do I have beautiful eyes?"
"Yes baby.  You have beautiful eyes."

Thursday, March 4, 2010

My Little Shadow

Morning Routine: Step 1: Little man wakes at an ungodly hour.  Step 2:  Little man requests a glass of orange juice, any amount of trying to put this off will just result in nonstop requests and pleading... so down the steps I tawdle, see the time on the microwave in the kitchen, and try to convince myself it'll be okay, I'll manage to get some more sleep (ha!)  Step 3: he drinks the juice on our bed, the second it is finished, begins begging me to go downstairs with him.  Step 4: I go, as to let the rest of the household slumber. Step 5: He gets face and eyes into Lego or drawing, and I get the coffee on, and proceed to drink 2 straight cups.   And then, and here's the kicker:  Step 6:  Looks at me with pleading eyes and asks, "Do I don't have to go anywhere today?"  
So, this is where the trouble starts.  This is a relatively new addition to the routine, but it is a very problematic one.  If I say yes, the obvious, panic- filled follow up question is to know where we're going.  Unless the answer is gymnastics or swimming....I have a sad little man.  What can I do?  I can't just stay home all the time.  I've been working hard on always being out and about with him, and that's the way it has to be for us.  I am a big believer in being happy at home, I am a homebody myself by nature.  But, I don't believe in simply avoiding all social discomfort.  That would definately come back to bite us!
So, here I am.  He knows he has skating this afternoon, we both know he doesn't really want to go.  But he will, and on the way home he'll get a 'sprinkly donut' from Tim Horton's as a reward.  So I am now trying to think of something simple we could do before lunch..just to get out of the house that he may enjoy....but I'm drawing a blank!  A walk, or just playing outside  is out of the question due to the wet weather we've been having lately.  So, I'm going to put on my thinking cap and come up with a good idea.  Maybe we'll just run to the dollar store and get some new pads of paper...we're always running low on that.  Or maybe we'll just go for a little drive, a change of scenery.
It used to be he'd readily follow me wherever I went.  Now he's always looking for a way out.
I can get him to come along, against his wishes, but it's not the same.  He's just quiet and waiting for our outings to be over. He's not enjoying them so much anymore.
And I'm missing having a little shadow.