Monthly Archives: March 2013

No respite, no return

Ask anyone today if it is a ‘good’ thing that such things as mental institutes no longer exist  Closed hospital wards and childrens’ homes are now a part of our collective past.

Ask anyone and they’ll say it “progress” and those places were ‘dehumanizing” and “cruel”

In today’s world community care rules the way, we are “supported” at home to care for our relatives with special needs. When they turn into adults they can if they’re “lucky” enter into group homes.

But do yourself a favour and don’t ask me. Not today.

Today my son has screamed and screamed and screamed.

He is on the highest does allowable of the medication to prevent this behaviour and he’s still screaming

He has been screaming non stop for 6 hours. He has violently lashed out. He has headbutted me pulled my hair out by the roots, gouged at my face and eyes, jammed his thumb up under the bone of my eye socket. He has smacked his head into a wall breaking more tiles in the bathroom. He has slapped and smacked his dadda.

He shows no sign of stopping.

I don’t know why he’s screaming. He started out of the blue when we were in the car.

6 hours of screaming.

And I can’t get him to stop.

And there is no-one who can help us. There is no safe place for him or us to go. There is no person we can call to come and help. There is no agency for us to turn to. There is no such thing as emergency care. I can’t even call the good folks charged with child protection in this country.

Instead we sit trapped in our home, utterly powerless waiting for this child to stop screaming.

So don’t tell me we live in an “enlightened” world.

Don’t you dare try and tell me that today is a good day to live in this world of “progress” and “enrichment” and “community based care”

Just don’t.

Rules of engagement.

How can I understand the rules if I don’t know the game he’s playing.

You hear all the time about autistic kids and how they are “resistant to change” and they like “order and routine”. Here’s how that translates in real life.

#1 When out and about in town staff must go to shops in order. There can be no deviation in the order. Any changes must be approved by management first. (Management will not approve)

#2 Upon entering the mall staff must proceed immediately to the food court for chips. 

#3 When entering any store on the approved list staff are not permitted to browse in any section other than the preschool toy isle.

#4 Sandals and shoes must be removed while sitting on the doorstep. NOT the front step. NOT the hallway. NOT the lawn. NOT the porch. The DOORSTEP ONLY.

#5 Do not presume management will be liable for any messes incurred herein and forthwith. Staff must not approach about any mess inquiries. Up to and including those of a “downstairs” nature.

#6 Staff are not permitted to eat any non-prohibited food without first offering a tithe to management  If this results in the loss of the entire slice of cake, sandwich, glass of orange juice etc etc management will not be open to negotiation.

#7 The order is pajamas  THEN a lap of the hallway, THEN teeth, THEN a lap of the hallway, THEN goodnight to mumma. Know the order, live the order or else….

#8 It is NOT permissible to enter the supermarket without a plan of purchase that includes either a cookie OR an ice cream, Both is preferred. 

#9 Management can not be expected to operate any previous set routines without prior and express directions from staff at all times, including but not limited to opening doors, turning up the iPad, removing socks, touching books and restarting dvds.

*sigh* “resistant to change”