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

Thursday, 21 February 2013

A Rose by Any Other Name.

Back when I did my undergrad in the early 2000s, I remember doing the one and only mandatory unit on inclusive education. It had a little bit on Rhett syndrome, it had a little bit on ASD, it had a lot on PC (political correctness). In my early 20s I was frustrated by the emphasis on the language. What did you really matter if it was a child with? Wasn't what was important the actual teaching?  Wasn't it more important that we manage to teach the child? I fully agreed that each child should be taught as an individual I just didn't see the importance of the words. Only a few years later, still in my early 20s, I fell pregnant with my eldest daughter. 16 hours after she was born we were told that phrase 'a child with' and it changed our world.
People always have nicknames for the disability, diagnoses or label. It is as though somehow making it a cutesy name takes the sting of it away. That's not the case. Well it's not the case for some of us. While my husband and I now consider ourselves very PC we know of other parents who don't mind using cutesy names, they don't mind cutifying their child's diagnosis. And that's okay. What's not okay is when our language reflects an attitude that puts the disability, diagnosis, illness, before the child. 

We don't say 'that's the hayfever student'.  We don't say 'that broken arm kid'. We don't say ' over there is the asthma girl'. We don't say here we have our 'anaphylaxis student' or the 'fallen arches boy'. So why do we say the Down syndrome child? Why do we say the Aspergers child.? During my undergrad I didn't understand what the difference was. Then I became a parent, and I understood, with perfect clarity. I feel the sting every time somebody sees my daughter and makes a generalisation. Makes a stereotype. Makes assumptions. Lowers their expectations. All because of a word - a label. Just like everybody else, she's an individual, a unique personality. It's important to us for people see her first and then see that she has other things going on. Who doesn't want the rest of the community to see their child for they really are?

Only a few weeks ago I got to start my dream job, again. I was in a similar role when we were living in Brisbane last year and when we moved back to Warwick I didn't think that I would be able to find a school that required me. But I was blessed enough to have an offer for my dream job. You see, I work in Special Education. I wouldn't call myself a special education teacher, because I seldom get into the classroom. It's my role to manage the bureaucracy and red tape. I am an advocate for parents, teachers and the students. I do the research for new strategies and technologies that will help teachers. I organise and I conducted professional development to help teachers improve their skills to help students within the classroom. In many ways I now consider myself a specialist teacher.

One of the things I love about working in schools is the name badges. And when the receptionist at my new school gave me my name badge I may have let out a little squeal of delight. On the badge was not only my name but my title of Special Needs Coordinator. Now I've been a Special Education Coordinator before  and I've been a Special Needs Teacher, but never a Special Needs Cordinator.

This got me thinking about the language again. I'm not a fan of 'Special'. To me it implies that the education my two other girls will not be 'special' because they don't have a diagnosis or label. I simply don't believe this to be true. My husband and I were talking about it and the title 'Disability Support Coordinator' didn't really sit that well either. Even though our eldest daughter has a diagnosed 'disability', we don't see her as UNABLE to do anything. I know the word 'disability' upsets other people and they embrace 'special needs/education'.

Then I wondered why the language can be so upsetting, whether it's 'a child with', 'special education' or 'disability'.  I think the long and short of it is that it isn't the words that are upsetting, but the preconceived notions, the generalisations, the stereotypes, the attitudes that come with each. The language itself doesn't bear these traits, it is the people who do. These traits are born from ignorance, not of the malicious variety, but simply through having not experienced the pain, loss or hurt that comes with a diagnosis. 

As thus I am recommitting to my calling in life, to advocate for my daughter, for others like her, for their parents and for those who care. I am committing to being a voice, a loud one, to try and wash away the ignorance that comes from lack of experience. We all need to tell our story, and we all need to be mindful of the power of words. They can build a person up, or they can tear them down.  I hope that if you are reading this, you will join me in spreading the word, because, 'unless someone like you cares a whole awful lot, nothing is going to get better. It's not.'

Please join me on my facebook pages and tell me what language works for you and your family: 





Saturday, 2 February 2013

She aint heavy, she's my sister.

With only six months left on our Better Start funding I was keen to find a second speechie. The joys of living in a country town though means that we have to drive an hour to find one. Our current team (OT, Speechie, Allied Health Worker) work on pragmatics and social skills and is based an hour south of us.  We wanted one who would work on articulation and will be driving an hour north to see that one. I'm fussy, I want all facets covered. No stone unturned.

It was an interesting venture trying to find a new speechie. Thankfully the Better Start website gives a list of all registered service providers. Thankfully those service providers need to publish how much they charge for assessments and therapy sessions. I was absolutely appalled to see some SLPs charging more than twice the going rate; I can only assume that's because some think it's OK to over charge given it's technically not coming from our pocket.

Now, while it's practically a given that our big girl needs a speechie (mild conductive hearing loss, constant grommets), we've known for a while that our middle girl needs help too. Even as her parents there are times when we can't understand what she's saying; she has been diagnosed with a moderate to profound phonological delay. As teachers we know it's something we need to resolve before Prep next year as it will undoubtedly impact on her ability to link sounds to letters.

So with two Enhanced Primary Carer Plans plus our Better Start letter we packed a cut lunch and headed to the new speechie. At first I was dismayed at the aging and yellowing posters on the wall. There were resources on her shelves older than I am. Even my big girl was rolling her eyes at the boring activities of 'what is this person doing in the picture'. I could feel myself going to sleep. My middle girl had a better time of it. She was happy to show off to someone. It wasn't until the end that things got really interesting.

Our new speechie told me that she's not met a 'Down syndrome child' (I'll rant about her phrasing on another blog) who has been able to use pronouns and prepositions as well as our big girl. Two things crossed my mind - firstly 'Have you met many kids with DS then?' and secondly 'BOOYA!!' 6 years 7 months, 2 weeks and 2 days of intervention is paying off! It's always such a nice feeling when you get good feedback, though I'm not sure where her comparison is coming from. She also told us that our middle girl is certainly bright, though needing help otherwise her speech might 'stick' in the bad patterns.

What had me forcing back the tears though, was her reasoning for our middle girl's phonological delay. She put it mostly down to the modelling provided by her older sister. To think for a moment that the diagnosis of one child impacts so negatively on a sibling is hard to contemplate. Did we do something wrong as parents? Have we disadvantaged our middle girl by having her knowing her older sister wouldn't have a straight forward life? Did we not do enough to prevent any negative influence? Should we have been more proactive and done something sooner?

Do those in 'regular' families, those void of a diagnosis,  know that it's not just the child with the label who is impacted upon by said label? There are so many financial costs incurred, thanks to a diagnosis, by those who don't even have the diagnosis. Our middle girl's speech therapy is just one example. The emotional cost is not so easily measurable.

Life will be hard for our middle girl. One day she will realise her sister isn't like other sisters. I pray she isn't told this by peers at school speaking harshly of her sister. I've heard of that happening. I hope she is able to ask us before someone says the wrong thing. One day we might ask her, and our littlest girl, to help out in caring for their adult sister. How will this impose on their adult life? In the school yard I'm sure they will hear things said, particularly the 'R' word. I'm sure they will see things that illustrate why their big sister's life is not straight forward. I'm sure they will feel that it's all unfair, and feel 'why me?' from time to time.

I am also sure that they will grow up to be tolerant, compassionate and empathetic. After we drove home from Toowoomba our girls asked to watch Tin Tin (their father reads the graphic novels to them). Our middle girl got 'scared' in her delightful melodramatic way and it was her big sister who held her and comforted her. It was her big sister that led her off to their bedroom after the movie and initiated a game of 'rescue'. It is our big girl who sneaks into the fridge to poor her sister big glasses of milk after making her a sneaky chocolate spread sandwich. It is my big girl who is teaching her sister how to write her name.

Without a doubt our big girl is a blessing in our lives. She has brought reason and passion to my life. She makes her sisters laugh every day. She has more to give and more to teach us, and this by far out weighs any so called 'negative impact'.  My older brother used to tease me mercilessly and throw rotten fruit at me. He is also responsible for some of my happiest childhood memories and for helping me become the person I am. It's the joy of having siblings. My big girl didn't knowingly teach her little sister the wrong way to talk, but she does knowingly help her and love her. I'm making the choice to look at my middle girl's speech need as a part of her life long journey that will shape who she is - and so far she is one of the most incredible people I've had the pleasure of ever meeting. That is in part thanks to her older sister, and her diagnosis.