Tuesday, June 26, 2012

iPaid for the iPad.

Finally broke down and got an iPad for Blue.  We have the program "Tap-Speak Choice" on it.  Seems mighty useful already just to have the iPad.  SO easy to show Blue things and places while he sits at his table.  And we don't even have the tap-speak programmed yet. Just started.  It's easy to program it,  even for a dolt like me!  Making pages, using symbols and photos, and layering the pages to ANY set of choices you want.  The biggest requirement is time.

I'll update as we work with it.  Cheers!

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.  

Monday, June 18, 2012

The Emperor's New Hands

Apologies : I got all confabulated with email addresses and passwords and it took me a while to get back into my blog. It's nice to be back in here. As for the big CE school project: all was ready but the ten students. There are students, no doubt, but they are spread too far to reasonably commute to one spot. Maybe that will have to come later. 
      For now, CE marches on; or hug-walks in its own fashion.
      For me, I am happy about the arm splints! So, we finally have some arm splints. It took the kind persistence of Zsuzsi to remind me (now 3 years later) that she wants Blue to use arm splints here and there throughout his day. Bless her determination. On a recent trip to Hungary, she and her husband Artur went to no small lengths to get the splints and a grab bar with suction cups from the Peto Institute. I sent her the measurements for Blue's arms, and somewhere overseas a nice person sat down at their sewing machine and made them for us! Some soft cotton cloth, a few plastic stiffeners, some velcro, and voila! Look at that kid hold on, and he's relaxed, and watching the video, looking at the book, and all this without the heavy wheelchair and stuff. What a breath of fresh air.
      When I begged the PT and OT over here in Canada to please please please get me some arm splints; they refused. So, often I hear that; and my son's arms are starting to look more and more like chicken wings. His hands are looking like they could easily end up permanently bent like accessories instead of useful limbs.
      My stars, why are these things allowed to go on for so many years? It's as obvious as global warming. Anyone with a human body can see what is happening to his legs, arms, and hands; and what am I told to do about it? Get an assessment, put buttons by his head, accept that this happens, and la de bloody da!

 So, as not to spite them nor angrily smite them;
 I did what we could for my little man,
who needs not a "lift" to go the can.
 He has legs, and can stand!
 He prefers it, I proffer;
Nuts to the offer
of gear and gadgets that disarm my son.
He holds, we count past a hundred and one;
He grips at the bar and leans on his arms,
These simple things simply contain all the charms;
drained by "pros" like spaghetti from sauce,
(Things would be different if I were the boss.)
So we sigh and sniffle and stare at the sky,
why can't we just start with HIM? Tell me why;
well, actually don't. I've heard it before,
take out the ef, you're left with a bore.
The ef is from effort, you've seen that before?
Or is this all Greek, you see not what I seek? 
I see him do this each day of the week!
He will, and he likes it; he does, and he do.
One only need try, yet they never knew.

Rhyme, rhyme; waste my time.  Somehow feels a bit better though.