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.

1 comment:

  1. Beautiful post. I am just starting this journey. My 10 year old was recently diagnosed with Asperger's Syndrome.