June 2018

The little SmartDrive motor on the back of my wheelchair is superbly good; it is reliable and more powerful than seems possible, but up our hill it will not go. The gradient from the bus stop back to our home in Paradise is a little too steep and a little too long. So this is my solution:  a motorised box full of bricks.

Ugly, but valuable, which is a lesson in itself. It has no name, it’s just “the thing that pulls the wheelchair up from the bus stop”.  It is a power wheelchair, radically altered. A seat belt connects me to it; and the joy-stick, freed from the restraint of a wheelchair armrest, reaches all the way back to a tray on my lap.  Steering is accomplished not by the joystick as much as by foot pressure on the rear wheels of the ugly thing.

And right now it is very busy indeed.  Teen Girl finishes school this year, and she and I are out on the busses several afternoons each week preparing for the big changes that she will face when adult life kicks in.  My hope is that she will become competent enough to travel by bus on her own by the end of this year, and independent enough to lead a busy and varied life in the year to come. As you may know, Teen Girl has down syndrome, which makes bus travel both a challenge and a delight in some rather unique ways. 

The delight is in the people we meet.  Nothing pleases her more than an opportunity to introduce herself to someone new, and busses are full of people.  One of the bus drivers made the valuable suggestion that she could sit in the front seat where she can talk to the drivers and get to know them. The first time I suggested this she plonked herself right behind the driver, staring at the black glass wall behind his seat.  Needless to say, this didn’t really work.  But when we got it right and sat across the aisle on the next bus she didn’t need any more prompting: there is little in life she likes as much as a good chat, especially with a captive audience.  Richard, like a number of our local drivers, has a warm heart and is always on the look out for people that need a little extra help.  It amazes me that sometimes when I get to a bus stop the driver will be waiting for me at the door with the ramp already out. This happens because the drivers talk to each other on their radio, and they keep track of particular travellers who are out and about, myself included. I have been talking with several of them for some weeks about our plan to see Cassie travelling on her own, and their support is wholehearted.

The challenges are both obvious and hidden. Timetables are always going to be obscure to her I think; but by sheer repetition, week in – week out, we are beginning to get a sense of when the bus leaves. Packing one’s earphones, iPod, drink bottle and purse away before the bus actually stops to let one off is a novel idea; one which is not supported strongly as yet.  One curious challenge has caught me by surprise: when to press the bell to get off.  Teen Girl tends to leave it much too late, until 15 tonnes of bus is barely meters from the stop. This can make a driver swear, no matter how benevolent they were feeling up to that abrupt point.  Or she goes far too early, one or two stops early!  Weeks into our project, including collaboration with willing school teachers on yet more busses, and a sense of spatial awareness is still elusive.  

This is an exciting time, I am thrilled by the possibilities.  My volunteer position at our local Library led to a work experience opportunity being organised for our daughter. Thanks to the wonderful NDIS, a worker was engaged to assist, and for one hour every Friday Teen Girl can be found doing a number of tasks in the Library which, frankly, astound me. I would not have believed she would be capable of shelving books in alphabetical order, but she can; and the staff tell me she is remarkably quick on the uptake of new jobs they give her. Our ‘shifts’ overlap by ten minutes, which is rather nice as she seeks me out for a very warm hello and goodbye. More importantly for her though is another visitor towards the end of her shift: a Companion Dog who comes into the Library for a weekly activity called, “Pat and Chat”. So this lovely, wooly Collie is on hand as a huge reward for a job well done at the end of her hour.  If there is one thing in the world Teen Girl loves more than meeting people, it is meeting dogs.    

So at the end of this rambling yarn I realise it has had little to do with my Ugliest Invention after all, and much to do everyday life in our family. I was going to boast about how I completed the whole ugly contraption, from concept to complete project, in an hour and a half (true), and go into detail about just how the wooden box full of bricks produces necessary traction on the tyres and the technical problem that prevents steering with the joystick (boring). But instead I talked about our cherished, delightful child and the life we share with her, and the amazing way her world and mine, each with its unique challenges, are such a good fit. I have lots of time free to spend with her, and because I no longer drive I know the buses of our town inside out (and I have the ((ugly)) mechanical means of getting up the hill again when we are done!). The way things work out in life is sometimes so beautiful, so intricately dove-tailed, and so abundant, that the phrase “things work out” is just lame! Surely there is a plan and a purpose in all of life.

 

Rejoice!

 

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