The Little Red Hen

Some times I feel like the Little Red Hen...

A1 had a huge night at basketball last Thursday.  He filled in for a second team who were short a player.  The game was sealed by half time with the oppostiion oer 100 poits ahead.  So the teams decided to feed the ball to A1 and let him shine.  He scored a total of 31 points and came home possibly the happiest person in the world at that moment.  Big brother caught one of his three pointers on video.  And A1 runs off doing a "DAB" ( which I still don't know what hat is haha) It's been proudly shared by family and the basketball club, and has had thousands of views.

Isn't that fantastic!!! And everyone is praising the teams and praising the basketball association for being all "Isn't inclusion GREAT!!!",,, Well, yes it is.  BUT... what they saw on Thursday night is the culmination of years and years and YEARS of hard work... largely by me.  ( I am fortunate to have a supportive husband, but the bulk of the carer role falls on me) And that stuff pales into insignificance.   I don't want to take anything away from how cool it was.  It truly was a brilliant night on the court.  It showed tolerance.  Understanding.  Patience.  Acceptance.  It showed all the things that I worked tirelessly for over the years.

Let me take you back to the beginning.

When A1 was 3 years old, his eldest siblling started playing basketball.  A year later sibling 2 started.  For around two years I spent two nights a weeking dragging A1 to their games.  I had to physically restain him, by bear hugging him in my lap, whilst they played ( I couldn't put him in his stroller as he could undo the harness).  If I let go of him he would run out the door or onto the court.  He screamed and wriggled for the best part of every game.  Eventually he learned, through my constant conversations about not runing etc. He moved on from there to runing up and down the courts pretending to referee the games.  Other parents looked on with... I dunno...sympathetic(?) smiles.

So A1 goes into year 2 at school.  The year that all kids start basketball in an after school team.  No one asked if he wanted to be on their team, so I put a team together.  It's fair to say that more than half the team were kind of lacking in natural skill, A1 included.

WHO WILL HELP ME WITH THE TEAM???
Not I said the husband... I'm busy with work
Not I said the other mums... I don't know anything about basketball
Not I said the other dads... I'm busy with work

So I became team manager, coach and scorer.... yay me.

A1 loved being on a team.  They never won.  In fact in the early days they rarely even scored a goal.  But they participated with enthusiasm.  And A1 threw a first class tantrum every time he was subbed off the court.  Yep... here comes those sympathetic smiles again... While I score, and coach and sub players.

A1 continued to play through til the end of primary school.  Big brother had finished primary school and we moved on to a basketball club.  A fanstastic group of families, and we were welcomed as a whole family.  A1 took a break from playing for a while, and continued to enjoy watching big brother play (without restraint or running up the courts. !  Go me)

Things kind of evolved from there,and next thing A1 is playing mainstream basketball with the same club as big brother.  Hubby is club president. A1 and big brother are committee members and coaching several teams.  And finally I can step back from being basketball mum. A1 also started volunteer work with the Basketball association.  A job he takes very seriously and carrys out every week with great pride. The boys and hubby are involved in basketball 6 days a week.  It's a great family sport and club. I'm proud of all of them.

And then Thursday night happens.  A1 lifts to superstar status and laps it up !  And it's shared far and wide on social media.

That's MY boy. and MY hard work in action. And damn it I'm taking some of the credit for it !

"It takes a village to raise a child"

I love that saying.  It's so true.  And by being involved in the basketball club and association we have a huge village surrounding us.  I don't regret one minute of putting in the hard yards.  I did it for a reason.  My goal in life since A1 was born, was toraise him to be a valued member of society, and for him to embrace an ordinary life in a way that HE chooses to.

So here's to me!  And all the other special needs parents out there who bust their guts, day after day, year after year, assisitng their child with a disability to live the life they choose, breaking down all those barriers ( and there are lots) to ordinary lives.  Give yourself a huge pat on the back.  You are amazing !  WE are amazing !!

I love my cup of tea. If I have the time to enjoy a big mug of tea in the morning my day is off to a good start. There is something about wrapping my hands around my mug of tea and enjoying the warmth generated from it that starts my day off just right. 

Even though I enjoy traveling and staying in different places I don't enjoy those standard little white tea/coffee cups and saucers that seem to proliferate motels, meetings, conferences, workshops, information sessions etc. They are everywhere. Even hospitals. It's like you just get to taste your tea or coffee and then the cup's empty. I actually take my own mug with me now, stowed away in my suitcase. It's nothing special, my mug. It's not expensive. But it does hold more tea than those little white things and it's color and patterns reflect my likes and preferences.  I chose my mug. It's mine. 

This reminds me of the disability service sector. For many people with disability, the generic white cup has been their only choice.  Services, lifestyles, activities offered or available have been of the boring, standard utilitarian white cup variety. Sturdy, easy to clean, easy to stack, allowing only a predetermined amount of tea or coffee in those bland, safe, sensible cups.

It used to scare me. The thought that my daughter and her friends would have to drink from those sterile vessels one day. But the National Disability Insurance Scheme (NDIS ) offers the chance for choice. Not only will my daughter get to choose her own cup or mug she can paint the darn thing any color she wants. She can design it if she likes or choose one from an op shop, a fancy kitchen store or from the many, many places where you can find such things.  She can choose when and where to have her tea, coffee or even wine. She can go elsewhere if a venue can't accommodate her unique needs!!! She can decide to drink milo, or swig lemonade from a bottle if she likes.

We can still choose to drink from the boring brigade of blandness. We can accept the utilitarian approach of easy to stack, easy to wash, lack of choice and control that was the past. Or we can create our own cup and fill it with whatever  sustains and nourishes us.

WHAT'S IN A WORD?

Language matters!

I have a really good friend who has some quirky traits. She colour codes her pegs when hanging out washing. She has certain ways of stacking a dishwasher that cannot be messed with. She will change her clothes a thousand times before leaving the house. Okay slight exageration here but you get the drift. There are certain chairs she will not sit on. Now going by this description we could say she has OCD tendencies. Or we could even describe her as being silly, non-compliant and a time waster. And if someone interfered with her hanging-out-the-washing ritual she may get quite angry and go inside to have a melt down. She also has one or two phobias.

This friend is also a lovely, kind, incredibly talented individual who runs her own business, juggles the needs of her family and is a valued member of her local community.

For many years people with disabilities have been labelled and assessed by their deficits. Anyone who has had to deal with enrolling a child with a disability in an education facility or applying for funding for support will know this method well. Can't do this, can't do that, needs assistance with this........blah, blah, blah. It's demeaning. The way we talk about ourselves or others can determine outcomes. If my friend applied for a job with her quirky traits listed on the application I doubt whether she'd be offered an interview. And yet people with disabilities wear these labels all the time.

We recently shared an Ooen Future Learning video on our Facebook page (see link here http://www.facebook.com/open.futurelearning/videos/1741725816062284/ )
Johnny ".....was what the staff called a runner." (I've heard that term so many times too)  And of course for reasons of safety it's important to identify that someone likes to run (away?).  But problems arise when that defines someone and becomes a problem to be solved as we see clearly in the video. Another way of saying 'X is a runner' might be something such as 'X really enjoys running'.  By describing someone as a runner and seeing that as a problem doesn't really lead anywhere other than stopping 'the problem'.  Using phrases such as 'X really likes to run' opens up new ways to think and create opportunities for using someone's strengths, likes, dislikes etc.  Maybe X would like to join the local long distance running club or athletics.  Maybe doing letter box drops in communities where houses are spaced some distances apart would provide  him with some income at the same time as indulging his passion for running.  Of course there may be many reasons why somebody wants or needs to run but the same principle applies. Try and understand why the 'behaviour' is occurring, look for other ways that might fulfill the same need. And always involve the individual in making decisions about their lives.

How we speak about people and the language we use can determine how others see them.  If we describe people using the deficit model such as X can't do this, can't do that, needs help to do this etc then others will take their cue from this and act accordingly.  If we describe someone as a runner  and then do everything we can to stop them running, how much damage might we be doing? If we can use language that identifies strengths as well as support needs a different view can be presented.  By saying  'X is really good at running and enjoys it and needs support to stay safe when running' we open up a conversation about what X is good at and how we can best support him to do what he enjoys.  X may well need someone with him when he runs. X may be assisted to identify risks when running.  X might be supported to identify safe places to run. By framing a perceived problem in a different way new opportunities can emerge that offer X possibilities for a good life, doing something that he loves.

Language matters!

"Just going for a coffee"

I read a lot about the types of activities people with various disabilities get up to, to make up their ordinary everyday lives.  "Going for a coffee" is a common one. I'm sure many see that as just filling in time, but it is oh-so-much-more!

Break it down.  First step is choosing the right support worker for this activity. ie. You wouldn't probably choose to go for coffee with your speechie, or your personal care attendant. I'd be choosing one of my support workers who I have a social connection with.  You know, just someone who you enjoy spending time with and can have a regular conversation with. 

Next step.  Deciding where you would like to go.  How should you dress. Can you pay with a card or do you need to take your wallet/purse with cash.  Do you need to stop at a bank along the way. 

The decision of where to go is something that most of us base on the food and coffee available, but for a PWD there are so many other options to consider.  If you are a wheelchair user, the size and accessibility of the venue will be a consideration. Often for people with intellectual disabilities it's things like the level of noise, the closeness of others sitting next to you, having familiar menu choices.  

Remember the movie I Am Sam?  They always ate at I Hop.  Sam's daughter took him somewhere different one day and it was a disaster. They had broken Sam's routine, and there were no choices familiar to him on the menu. (Yes, I really do base so many of my life thoughts on my favourite movies haha) 

So you've chosen a support worker, and a venue.  And then you just "go for coffee". Right?  Sure.  After you park the car, exit safely, and navigate crossing the road (another opportunity for working on road safety) .  Stop by the auto teller and take out some cash. (Consolidating cash handling skills). Head to your cafe of choice, and decide where to sit (wheelchair accessible spot, table away from too much noise, table near a window so you don't have to look at everyone else) .  Then comes the ordering ( another opportunity to build on confidence, appropriate dialogue with the cafe staff, reading a menu, making sure you have enough money, cash handling)  It's complex 'ey!  It's also incidental learning, just by living life! 

And then you get to enjoy the cafe life experience.  A great place to sit and enjoy your favourite coffee, tea or hot chocolate and definitely cake!  Cake is always essential to the whole experience.  

Do you get me ?  "Going for coffee" is a great social experience, giving the PWD an opportunity to access the community as an ordinary person and experience true inclusion. An opportunity to learn new skills, such as social dialogue, appropriate behaviour in public (picking your nose, or sneezing without covering your mouth is not a great choice) manners, cash handling, safety in the community and INDEPENDANCE!  How good do you feel when you go out and catch up with a friend for coffee?  It gives you a sense of freedom from the everyday grind.  A sense of friendship and feeling like your conversation and thoughts are important to someone other than yourself.  And mostly, a sense of belonging... Living life like an ordinary person.  

Since moving to this way of life for A1 his confidence is booming.  So much so that on most occasions he now arranges his own support worker via text messages!  How good is that!!! 

The "C" words. Building an ordinary life

Change.  Choices.  These two words make my palms sweaty. I'm sure I'm not alone in feeling that whilst both can be good, there is an element of being comfortable with what you are already doing, even if it's not working all that well!

At the time of our son turning 18, Geelong was about to become the first NDIS trial site. I'd been reading and hearing about for years, how he would move onto Futures For Young Adults funding once he was finished school. But with the NDIS about to be introduced, we found ourselves in la la land trying to navigate it all!  Without boring you with details ( might save that for a future post) we found ourselves in the hands of a very enthusiastic NDIS planner.  

A1 was attending a day program, three days per week.  At the time it was to my knowledge, pretty much the only option post school. That was until our planning meeting.  After a long chat and lots of things been written down, our planner looked up at me with excitement on his face. "You know you have 20 hours of one to one support.  You do realise you don't have to use a day program? The possibilities are endless! You can employ support workers for your son.  You can CHOOSE your own support workers..." And on he went. He filled my head with ideas.  His enthusiasm was captivating.  I came away feeling excited but nervous! The comfort and relative ease ( apart from the daily struggle to motivate A1 to attend) of having A1attend a day program, was... Comfortable! But it wasn't working

So began the thoughts of CHANGE, with all these new CHOICES.  

"All it takes is faith and trust... And a little bit of pixie dust".  I love Peter Pan.

How do you build an ordinary life? We started by listening to what A1 was talking about. He loves sport, in particular basketball and AFL.  He loves going to the gym. He loves being one of the boys.  He loves long drives in the car, listening to Taylor Henderson or Grease.  He loves basketball and the social activity that goes along with it.  We started to think about who might be suitable as support workers for A1.  We drew on our local community resources and came up with three or four possibilities.  Currently we have three fantastic support workers engaged, who work at various times with Andy, supporting him to live his ordinary life.

He actually came up with the idea himself that he could work at Basketball Geelong. First light bulb moment! So we contacted them, they embraced it. A1 works there every Wednesday afternoon as a volunteer, doing various tasks with the assistance of his support worker. A1 is also a player, assistant coach and committee member of our local basketball club.  Most of his basketball involvement is supported by family, however on occasion we use one of his support workers to assist him to attend games etc. when family are unavailable.  He has basketball commitments four nights a week! Plus Sunday training and committee meetings. This is of course, just one aspect of A1's life.

That's how we have started to build A1's ordinary life.  Draw on the persons interests.  Look for support workers who have mutual interests or attributes that will compliment the person with a disabilities goals and dreams. And start thinking outside the box!  A1 is thriving with this lifestyle.  His independence is growing daily as he now has the time to absorb life, rather than living life via the constraints of a structured program. 

PS: it's not been all smooth sailing with the NDIS. But overall our experience has been a positive one.  

What makes a life good? I've been pondering this question quite a bit recently as I've had the pleasure of attending a few events that have explored this very question. As the National Disability Insurance Scheme rolls out around Australia people with disabilities have a real opportunity to pursue a good life. But of course everyone will have different ideas about what makes a good life. My life is good because I have a family I love, a home to retreat to and choices in how I go about my daily life (within reason of course). I get to have my cup of tea in bed on a Saturday morning and in my  favourite mug.  I also get to stay in my pyjamas all day Sunday if I really want to and don't need to go out of the house.

In the not too distant past people with disabilities have often been denied choice in their lives. Or if choice was available it was limited to what services providers decided to offer.  However what we are seeing now are opportunities for people to be the creators of their own lives. Rather than being passive recipients of care, people with disabilities have a chance to be active participants in their own lives, pursuing their own goals and dreams.

Over the past 3 years we've been supporting our own daughter to pursue her own life through identifying her likes, dislikes, looking at what hasn't worked and what has worked in the past. We know what a good day looks like and what makes a day not so good. She finishes school this year so she's been thinking (with support) about what she'd like to be doing next year. She is keen to do some voluntary work at a local animal shelter one morning a week. She wants to do yoga. She has tried out a couple of activities at the local neighbourhood house and this will be an option too. She may be returning to school to do some volunteering in the office.  Like many young people she wants to go out for dinner or the movies with a friend. Or plan a weekend away. At this point she will require support to do these things and we are confident that this will all be possible.

All in all an ordinary life. And a good one.




It's an exciting time. Instead of having to squeeze her unique and beautiful shape into a pre-determined mould she is creating her own space and determining what fits. Bring it on.