Tuesday, June 19, 2012

Ach! When can I give up ?!

Oh my hairy, stinky, ever-loving, excoriated, downward-pointing Stars!  When can I give up?

Blue's in daycare: I tell the lady, "He can sit on his own, if you just stay close to him and support a bit at the shoulders like this . . ."   She looks straight at/through me, smiles, and waits for me to leave.

Blue's in grade 1: I tell the lady, "He should have a bar on his desk, and he can sit there, out of his wheelchair and hold on, if you just stay close and make sure he knows he won't topple more than an inch away from centre." She smiles, and nothing happens . . .

Blue's in grade 2: I make a video of him sitting at the table and holding on by himself for 30 minutes.  I send a copy to the physiotherapist and other folks.  Nothing happens.

Blue's in grade 4: He changes schools, and I tell the principal, the lady, the teacher, the SEA, the world, the northern hemisphere, the dust bunnies, and other people that the diapers aren't necessary.  They look at me like I eat diapers for lunch and isn't that bearnaise sauce just the trick?

Blue's in grades 5 - 8: I blather, foam, mutter, mumble, dance, stand on my head and do the jitterbug. I tell the lady, "The diapers are actually for you.  HE doesn't need them.  The lift, the sling, the commode is actually for you.  He has a modern-age, portable, fully-adjustable lift that has its own power source to get in and out of his wheelchair; to the toidy, etc."  They wake up for a nanosecond and look at me and ask, "Really?  A portable, fully-adjustable lift with its own power supply?  What is it?"  I brutalize them with the truth.  I say, "His legs!"  It's too much to process.  Their eyes glaze over, I disappear into the fog.  Forty-five 3-inch binders with D-shaped rings bursting with professional gobbledy-gook are the last things I see as I pass out.

Blue goes to high school:  I stupidly take a luxurious sigh of relief.  The Canucks lose the Stanley Cup final.  Who cares?  I rehash my mantra.  He doesn't need the diapers.  He wants to use his hands.  He needs to get out of the wheelchair.  There are ways to help him stop the ever-open mouth and persistent gagging.  The diapers are for you.  He doesn't actually like to pee in his pants.  The sky is blue.   Kangaroos are native to Australia.  Carbon has four bonding sites. Tomatoes are actually fruit!  The SEA says the teachers don't allow it.  The teacher says the OT didn't approve it.  The OT says, "Oh James, you're up on your soapbox again."  The big meeting happens, 14 chefs and a simple sandwich cannot be made.  Holy bureaucrap, Batman!

Nothing is ever going to happen in this forest of plastic trees!  I don't need ONE creative professional.  I need an entire new school!  We cannot start one; because it does not exist here.

Here I stop.  I can no longer add the word, "yet."  Yet is a four-letter word today.  


happymomlori said...

I feel your pain. Keep going, James.

James Forliti - Blue's Dad. said...

Thanks, Lori. Hugs to Ben.

Annette Demack said...

Seems this is the truth the world over. This is exactly why CEQ (Conductive Education Queensland, in Australia) will be a school one day. We are determined and words like yours are exactly why it must happen! Heartache for you, but inspiration again for me to keep going. These children and adults deserve so much more. Hang in there and stay on your soap box and keep pushing!

James Forliti - Blue's Dad. said...

Thanks, Annette. Blog that blog! Let me know how things go with CEQ..

Lori-ann said...

We are one, keep counting!