A perspective on the world of disability from a mother and an educator. Follow my blog!

Friday, 28 December 2012

An unexpected Christmas.

Christmas is a time of year when everyone is set for a roller coaster of emotions. I've certainly felt a whole gambit of emotions this holiday season.  Frustration at the shops, happiness to see family, sadness at saying goodbye to them, regret from eating too much and joy, the joy a parent feels when the children wake up and see their presents.

My husband and I are the sort who start planing our Christmas gifts back in June. We like to be organised and hate the financial strain at the end of the year. This year we were blessed enough for our daughter to be a recipient of the Better Start funding and at the end of the financial year we faced a use it or loose it situation with some of her funding. We decided to think ahead and buy her a Christmas gift, something that she would be ready for in another 6 months - a scooter.

Now this isn't any old scooter. It cost 9 times the price of the scooter we bought for our middle daughter. It's a three wheeler with articulated steering. It has an impressive maximum weight limit and ergonomic handle bars. Plus it's purple. :) I couldn't tell you how many times the joy of simply buying a toy for my eldest has been robbed from me because of always having to think of: what is developmentally appropriate, what is help to help motor skills, what will help social skills etc.

 On Christmas morning there were two scooters awaiting our eldest girls (our youngest is only 1 so we thought she could wait a few years!). We knew they were both expecting a scooter from Santa. We were expecting them to be over the moon at seeing them. What happened next was not something we expected.

Our eldest couldn't stop riding her scooter. We don't have any concrete around the house so she rode it up and down the hallway and back and forth across the verandah. She mastered it pretty quickly. Our middle girl was keen on hers but her skill level prevented her from mastering the scooter balance. The next morning saw a trip to the park where we saw a dozen other kids all zooming around on the scooter they had obviously just received from Santa. Our eldest took less than 10 minutes to completely floor her parents.

She had speed, she had balance, she had two feet off the ground. She taught herself how to use the brake! She rode her scooter down the path towards to street filled with traffic. She made her parents gasp with fear, she stopped the scooter, hopped off and turned it around without prompting.

We were just gobsmacked. Our big girl had completely exceeded all our expectations. Our middle girl was enjoying her own success but will need more practice to master it. Our big girl was able to master in so quickly in part because she's 2 1/2 years older than her little sister, but also because she was riding a scooter that was designed to make it easier for her.

Two things have jumped out at me from this experience. It is right and fair that sometimes our big girl gets things easily, and before her sister does. One day her sister will pass her in pretty much everything; her peers already do. But just this once it wasn't hard. We have found so much joy in this.

The second thing is that I see this as a perfect example of how our girl, and many like her, can do the same things as their peers. Sometimes they just need a modification or two, and adjustment here or there, different methods, different materials. Equality of opportunity is a phrase you'll hear a lot from me.

We took the girls back to the park the same afternoon as they were so keen to keep scooting. Our big girl saw the teenage boys at the skate bowl and wanted to have a go. One split lip and two grazed knees later we couldn't be prouder of her!

Wednesday, 19 December 2012

The importance of carrots.

I've always been fascinated by the world of blogging. So many people with so much to say. In all honesty though I have only ever followed one baking blog and that was just for a few months. I guess that's one reason I was reluctant to begin one myself. Did I have anything worth saying? Would anyone listen?

After the events of the last few weeks I know that I do have something worth saying, worth sharing, and I hope that I can give something to those who listen. You see, I'm an advocate. I advocate for my daughter and many others like her. I consider myself to be a voice for those who struggle to be heard.

My daughter has an intellectual impairment, amongst other various ailments. It's because of her that I changed my career to work with other children with learning difficulties and disabilities. She gave me purpose. Over the years through my work and through meeting other families in a similar boat I've found that often we feel dismissed, ignored, undervalued, misunderstood and occasionally out right discriminated against. My hope is that with this blog and a new Facebook page, we can create a community of support and advocacy and try and remedy some of those things that make life more difficult than it should be.

In the case of my daughter, she finds it extremely difficult to be her own voice. Making her own choices with assertiveness does not come easily. So many times I have seen the frustration in her eyes that just says "I'm tired of everyone always telling me what to do". So many decisions are imposed on her.

Lately, I have been made to feel the same. In certain arenas we as parents have not been given the opportunity to collaborate with other care providers and this has let us feeling angry and frustrated (not to mention writing a 3 page letter of complaint!). We have felt that our voice has not been heard and that others think they can impose their decisions on us and our daughter. We don't think that our voice is the only voice to be heard, but to be told upfront that you need to be quite in confronting and insulting.

I know in my heart this is not the way I want it to be. Professionally, I know that the best way to achieve the outcomes you want is to work collaboratively. When you have a child or a person who has many different people inputting into their life, team work is not only the best way to go, but the only way to effectively achieve the outcomes everyone wants. I visualise the two donkeys tied together pulling in opposite directions to get the carrot. If they both went in the same direction at the same time they could easily have both carrots.

As a parent I know at times I need to focus on the carrot my daughter is chasing. If her priorities are not my priorities how can we work together? If I help her get her carrot, she can trust me when I suggest a different carrot to chase.

It's the same when trying to work with her other care providers. No one care provider has the role of professional which sits above that of parent. We are all on the same playing field of skills and knowledge. You might be an expert in one field, but I am an expert in my child. I'm willing to listen to you and to take on board your advice, are you willing to listen to me?  If we could all just sit down and talk about which carrot we are working towards, we'd all get their faster.