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

Thursday, 26 December 2013

Christmas Engine Overheating.


Best. Christmas. Ever. I honestly don’t know who has a better time, the children who get to experience the mystery and wonder of Santa or the parents who soak in the smiles on their faces! The girls were thrilled were their gifts, no disappointment and I've got to say that hubby nailed it this year with gifts for me. What a thrill to open a gift and know that that off hand comment you made months ago was listened to. How spoilt am I?!  We remind our girls of the reason for the season, and for us it is much more about sharing space, time (and food!) with those you love and who love you.


We drove for more than 5 hours on Christmas day to spend time with my SIL’s family. Absolutely worth it. So much friendliness and warmth it was overwhelming. That’s the ‘magic’ of Christmas. For us it is always a little nerve wracking to go and spend time with people we don’t know and who don’t know us. There have been so many experiences in the past where strangers have treated our big girl or us in a way that was unsettling. Those moments stay with you and the ill feeling returns any time we put ourselves in a new situation with people we don’t know. How will they respond to her? What are their understandings of disability? What prior experiences and prejudices do they have? Do they say ‘Down syndrome person’, ‘Downsie’ or ‘person with Down syndrome’? Any encounter with new people is filled with trepidation.

I am so grateful that our day was spent in a small country town with people who weren’t filled with judgement, who didn’t have preconceived ideas about how little to expect of my big girl. I honestly can’t remember most of their names but the kindness they showed to my family and me won’t be easily forgotten.

Imagine my surprise when the bon bons are cracked and MY GIRL is the one reading the jokes out to everybody! Talk about functional literacy! How my heart swelled with admiration for her, know how hard she has worked to get here. Fast forward a few hours and she is the one in the pool coordinating everyone to play diving games when only that morning she had unwrapped her pool toys and told us she was too scared to go diving. What an amazing day – a gift that kept on giving.

And then there was Boxing Day.

As so often happens with our family, any adventure takes its toll. This is the reason we can’t do extra curricula activities after school, why we seldom go away for the weekend. Today my big girl is crashing and burning. Very similar to a sensory overload, Christmas Day was filled with so much for her to process that her mind and body have gone into shutdown mode. Not unlike a car struggling to go the distance in the Christmas Day heat. Eventually the hood needs to go up and the radiator pops its lid. Wait for it to cool down, refill and off you go again.

The heartbreaking thing is trying to explain to my middle girl why her sister is acting this way today. I have to tell her that we don’t excuse bad behaviour, but we need to understand why it happens. We need to be extra patient with her, and to help her the best we can. Telling my middle girl she needs to be a grown up and explaining that her sister’s mind and body is ‘different’ to other people is inevitable, but I don’t have to like it.

Thursday, 19 December 2013

Success starts with the seed of motivation.


After the hustle and bustle of a busy year, being forced to go slow has been a delight. No school lunches to make, everyone sleeping in, catching up on missed TV, and connecting, I mean really connecting, with my girls and hubby.

Hubby has always known that I’d love the big country kitchen veggie patch and after getting me my country kitchen, and my country chickens (as much for therapy as practical reasons!) he set to work. It is a beautiful two-tiered masterpiece complete with up-cycled sleepers, herbs in rustic wooden barrels and a fence to keep the chickens and dogs out. It has been wonderful to see his vision start with the first push of the shovel into the soil and finish with planting a variety of goodies.

While hubby designed and built it knowing my preference for aesthetics, he was inspired by our middle girl coming home from kindy with a pumpkin plant she had grown from seed. Needless to say that particular plant didn’t survive until the patch was finished but the level of involvement she had throughout the whole process has been astounding. She turned the soil, helped carry the sleepers, shoveled manure into the trailer, shoveled dirt out of the trailer, hammered stakes, picked out the veggies from the store (we couldn’t NOT get the purple carrots), and lovingly planted them without fear of getting dirty.

There was never any hesitation on her behalf or mine to help with the project because it was something we both greatly desired. In teaching we’d call this a highly motivating activity. It engages, it inspires and it is easily facilitated. It doesn’t need to be fully planned out from start to finish, in fact it’s best if you don’t. In order to keep the inspiration and motivation from dwindling you need to incorporate the input of others.

Other times, motivation comes purely from within, but it still needs to be fostered, though not facilitated. My big girl has spent most of this year teaching herself to click her fingers. Not a bad feat when it’s hard for your brain to tell your muscles what to do on such a detailed level. Every now and then we would catch her practicing unprompted, always offer praise, but also reassurance when she became frustrated.  While I wouldn’t say that clicking her fingers was high on MY list of goals FOR HER right now, it was so very important to her. It was a desire inside of HER to achieve something that meant something TO HER.  The obvious pride she wears on her face when she shows off her clicking is palpable. And brings tears to my eyes.

Without that desire inside of me to get out of bed each day and embrace the life given to me, where does the joy come from? No one is going to deliver it to me in a sealed envelope each morning before breakfast. Holiday motivation has been pretty forthcoming so far with manicures, pedicures, new hairstyles, veggie patches, visiting family as well as trips to the zoo and beach filling our days. I love getting out old music favourites on holidays and feeling recharged by them. One of my feel good songs at the moment is ‘Cooler than You’ by Ben Folds. (mild language warning).  Immersing ourselves in beautiful life moments and surrounding ourselves with people we love and who love us, that motivation is easy. Perhaps it is this joyful place we’re at right now that has inspired hubby and I to take on a big project we’ve dreamed of for years. Let’s just say it involves good teaching, a love of kids, and sharing it. If it succeeds we’ll celebrate here. If it fails I’ll admit that too!

I will draw my motivation and inspiration from my girls who have vision and perseverance to see it through just as I draw from the enthusiasm of my students in the classroom. Maybe it’s time I learnt from them rather than the other way around? It is thrilling to be taking such a big step out of our comfort zone together!


Tuesday, 10 December 2013

Chocolate Glorious Chocolate!

So many chocolates! I was so blessed to received box upon box, upon box of sweet chocolately goodness. It's nice to feel appreciated by the parents and children you work so hard for all year though I'm not ashamed to admit I had to re-gift some simply because of the sheer volume received by both hubby and me.

My favourite so far has been the Cadbury Dairy Milk Tray. I found a chocolate I've never comes across before - the chocolate mudcake. 'What should I expect?' I wondered to myself. 'Will there be actual cake inside?'. I bit into the most delightful dark chocolate gooey centre coated by the outstanding Cadbury exterior.

To look at the chocolate from the outside you had no way to know what was inside. It was a circular plain chocolate with no detail on top. Yet inside was a cornucopia of flavour. There were other chocolates that gave themselves away more easily. The strawberry centred chocolate was clearly shaped like a strawberry. You knew exactly what sort of delicious to expect.

Children (and adults) are not that dissimilar to chocolate if my time as a parent and teacher has taught me anything. I sound a little Forrest Gump I know but the analogy works for chocoholics like me. I have a daughter who appears to be a strawberry chocolate but turns out to be a mudcake. She looks and acts differently and because of this people place certain expectations on her. This is a flawed approach because though the exterior might tell you one thing, the inside is beautifully unique. When she was just 6 weeks old I was so sick of people saying 'kids with Down syndrome are such happy kids' that I took a photo of her crying just to prove to everyone she was just like every other baby. So many expectations have been made about her over time and I am so happy to write that she surpasses them all. Her report card showed that while she has areas to work on (as we all do) she is working so very hard to achieve the best she can. She has to work so much harder than the other kids just to achieve the same. No wonder she is exhausted at the end of term.

I've come across many children and adults this year who are the chocolate mudcake. Seemingly plain on the outside but with so much depth inside if you are willing to look beyond the exterior. Children  who have been mislabelled or put in the too hard basket. Adults who judge on a Cadbury coating rather than the individual centre. They look into the Dairy Milk Tray and judge. It isn't hard to work with a child to turn a hard centre into something that is softened to learning, it just takes desire and dedication - a chocolate addiction. A heart that can appreciate that even compound cooking chocolate has its place and time.

Enough blogging, I'm hungry!


PS: Was delighted to be given such thanks by students and parents, but I did tell them all that my thanks is seeing my students happy.

Saturday, 30 November 2013

Haunting Guilt

That feeling of guilt from my last post hasn't dissipated. In fact, I can feel Sylvia Plath's Bell Jar hanging over my head as though it should be renamed the Bell Jar of Damocles (See my previous post). As the end of the school year rolls around I can't help but think of all the things I did wrong this year. The things I could have done better. The things I should have done more.

It seems I'm not alone. I heard a story of a parent this week who was really at breaking point feeling a similar remorse for past choices and not knowing what to do in the present. I was in tears because I knew they were in tears. I need to buy shares in Kleenex after this year. Her boy is a wonderful yet misjudged young man. Told many years ago 'it's probably ADHD - go get a diagnosis', it was apparent to me that wasn't so. He was so emotionally overwrought from years of 'trouble' that he was programmed by his environment to act and react a certain way. I have heard from many sources about him before, none of the stories good.

To never hear a person spoken of in a positive light is such a profound revelation about the environment that person is trapped in; about the lack of support and empathy that person receives for their indiscretions. When you are universally know as 'the naughty boy', what hope do you have of ever getting out of that spiral? You know no-one will ever praise you for trying to be good. You know people will misinterpret your actions because they see them through their lens, rather than clear, objective glass. What's the point in trying?



As adults we can say 'Well it only matters if I know I was trying my best' and to a large extent this is true. If we can sleep at night with a sound conscious knowing we tried to do right by our fellow man then that should be enough. It's like forgiveness; something that comes from within and is irrespective of what it is attributed to. This is a very hard concept to explain to any teenager, let alone one who is struggling on a daily basis. But perhaps this answers my personal dilemma.

If forgiveness is something that we give and is not something that is earned, then why is it so hard to forgive ourselves and lift that feeling of guilt? It should be given knowing that we've tried our best, and not taking into account the judgements of others. I should be able to forgive myself for not doing the home reader, for forgetting the lunchtime pill, for choosing to wipe the benches before sitting down to draw with my girls. I tried my best, and I should forgive myself for not reaching those unrealistic expectations I place on myself. How would this young man's world change if those around him acknowledged he was trying his best, rather than assuming the worst?

The first step towards a new start for the young man of this story was a fairly simple one. It was a phone call. Support is now in place. I hope the second step, and the third, fourth, fifth and every one after that, will be as easy. I have no idea what number step I'm taking. But the future is filled with less self loathing, and trying to do right, do better and do more.



Sunday, 24 November 2013

Life is sweet!


The LesliesDessert dinner party. House over flowing. Acknowledge bad parenting- comparisons made. Bad parenting for a child with a disability- forgetting meds, missing appointments, not doing extra intervention, not able to do extra curricula, too tired for play datesAnyone who knows me that there are three loves in my life. Family, teaching and BAKING! I adore food, but not so much the eating, it’s the sharing time and space with other people. It’s giving a little of yourself to bring joy to others. I grew up in a house where food played a central role and it was about coming together to talk and share stories. Cooking for others in times of illness or stress is something I’ve not just taken part in, but gratefully received.

There is nothing quite like a house full of people, adults and kids, and the sound of laughter filling every space available. I was blessed on Friday night to be able to fill my house to the brim with people who are very dear to me and people I love to cook for. We decided on a theme for the night, which reflected the parental sentiment felt by many at this time of year. We’re all feeling the guilt of being too busy to provide all the things our children need, so we embraced this feeling and went with a dessert dinner party – where all the dishes served were desserts. No meat, no veggies, no salad. The kids thought all their Christmases had come at once and as parents we didn’t have to feel quite so guilty about not preparing a healthy square meal for just one night.

At one point in the evening my beloved eldest comes out after raiding the dress-up box, dressed as 'Dr Bunny' ready to heal our ailments as apparently we were all 'sick'. Must have been an epidemic of high blood sugar levels after all that dessert for dinner! Dr Bunny was kitted out with authentic equipment: blue hair net, rubber gloves and a strawberry scented anaesthetic mask. When I made the comment about how each time Dr Bunny had to have surgery (all minor) she was bold enough to ask for her souvenirs for her doctors dress-up kit, the room fell silent. Everyone was mulling over the thought of how many surgeries that would require (not as many as others I know, so we feel very fortunate). There was that moment of feeling a little bit different as a parent; that reminder that our experience hadn’t been the same as everyone else in the room.

That guilty feeling that often pervades your parental consciousness is seen through different lenses when you are a parent of a child with a disability. Bad parenting for a child with a disability means: forgetting medications, missing specialist appointments, not doing extra intervention, not being able to do extra-curricula activities after school or on weekends, feeling too tired for play dates, robbing your child of their childhood with too much intervention… the list goes on. As I looked around the room it occurred to me that everyone there had a unique concern for their child, which wouldn't be considered above and beyond normal parenting, but showed that as parents we all want the best outcomes for our children. Our concerns for our child are not above and beyond those of the other parents in that room, nor are their concerns for their child any less valid than ours.

There is a commonality of experience. Parental guilt comes from wanting to give our children better than we had, the best part of ourselves; setting the benchmark high and falling just short. Life gets in the way of who we want to be.  We are surrounded by people walking the parenting path with us and when our path is rocky we lean on them and offer our shoulder to others when our path is smooth. We don’t judge as we all have our bag of crazy we packed for the journey. It’s about building each other up, not tearing others down to selfishly get on top.

Wanting to do better is the first step, whether it's parenting, teaching or disability advocacy; taking that guilt and using it to our advantage. Not being owned or controlled by it but actually finding a sense of peace in owning it. My peace comes in knowing I have such amazing people in my life. These holidays will be filled with the joy of sharing our lives (and baking!) with friends, both new and old.

Friday, 22 November 2013

Special Delivery!

Just a very quick post to share a pic of what my Principal gave me this morning! I'm over the moon thrilled and my kids were squealing with delight. This is one VERY happy teacher today!


I fully believe that who I am as a person and a teacher is reflected in my family and students. This is a wonderful affirmation. Thank you to those who inspire me to do better every day!

Wednesday, 20 November 2013

Nurturing the child.

With only 10 days of school left for this year I am feeling like a bonboniere. The end of a school year is always bitter sweet. I am desperately looking forward to lying in bed until well after the school bell would have rung to start the day. I am looking forward to working around the house, baking, baking and more baking and most of all, spending time with my girls. The bitter part of the holidays comes from me missing my classroom, my office and my students so much it almost hurts. Yes.... I cry on the last day of school as much as the teenage girls do.


I feel truly blessed that I have had the opportunity to come to know so many gorgeous souls over the course of this year. Next year there will be time to continue getting to know these kids, plus a whole swag on new students. Sitting back to reflect on this year I am astounded by how different each of my students really are and how the experiences of this year have helped to shaped and change them. However, it's important to remember that it's not just this year of schooling that has made them. When planning for next year I won't just be taking into account what happened in the last 4 terms of school.


For the last 6 weeks in English we've been talking about perspective and how an author will put certain things into a story that tell us about his or her experiences. They've been able to put themselves into the shoes of others and practice a little empathy. It's been great for them to talk about themselves, reflect on their lives and then realise how that influences the choices they make today. It would be even better if they could then think about how future actions will impact on them before they happen, but I expect as 13 years olds they aren't quite ready for that!


With such a variety of kids across the two campuses I look after it is interesting to think about how their home experiences affect their personality. Some come from very challenging environments, others very supportive, many in between. The relationship between nature and nurture is such a complicated and fascinating dynamic in a classroom as there is so little of it we can actually control as teachers. Many teachers still try and control classrooms rather than letting the experiences happen and using them to learn from.


The nature vs nurture interplay is clearly evident in pregnancy and early childhood. I adored all three of my pregnancies and would gladly sign up again, yet I can see how nature has affected how each child was nurtured and how nurturing affected their nature. Having that life growing inside you makes you so acutely aware of how the things you do influence the growth and development of another. As babies develop in utero any stresses experienced by the mum can impact on their neurological development (Example A - hubby), a difficult birth can impact negatively as well (Example B- myself and daughter number 2). Pre-eclampsia and premmie babies are a good example of this risk factor, though positive outcomes are also possible. Through my work in early childhood I've seen so many infants and toddlers affected by the stresses their parents are experiencing - never for their benefit. Once the event has happened, there's no going back. If the event repeats, it is even harder to repair. Nature and nurture are so intrinsically linked that you can't separate them.


I can't control the early childhood experiences my students bring with them when they walk through my classroom door. Often I won't have any clue about them from in utero or their birth story. Most often I don't even know if they've had breakfast that morning! I can't control or change what has happened before, but I can impact on how they experience life while in those four walls. I am able to control how I plan and teach. So much of their nature is determined before I even meet them, but perhaps if I can nurture them based on who they are when they come to me, and not some preconceived notion I have about what a student should look and act like, then that nurturing might impact on their nature for the better.

Monday, 11 November 2013

Defining Moments


The other day I was asked to define ‘Special Education’. It made me pause for a moment. That phrase has never really sat well with me. I remember as a child that ‘special schools’ had such a negative image. When I had my second and third daughters I had to ask, “Why aren’t they ‘special’? Will their education be less because they aren’t considered to be unique and special?”

One of the blessings and joys of working in a small school is that you get to be a jack of all trades. The last school I worked in had a Special Ed teacher, a Learning Support teacher and a Gifted and Talented teacher. I am all of those things at this school (on top of my beloved grade 8 maths, English and science classes!) yet I don’t get to spend as much time at it as I’d like. The challenge has been amazing and I’ve gotten the chance to apply all the things I’ve learnt from the people that I’ve worked with. Even so, the term ‘Special Ed’ still wasn’t leaving a palatable taste.

After a chat with my principal who understands my obsession with semantics, we’ve settled on a new job title for me for next year; one I am very excited about, given I am taking on the task of coaching the teaching staff to improve the writing skills of our students. From 2014 our school won’t have a ‘Special Needs Coordinator’, we will have a ‘Learning Enrichment Coordinator’. This title really reflects the desire to help all students achieve their best, whatever that may be.  I am busting waiting for my new name badge! Learning Enrichment aptly looks at the lifelong learning skills of everyone equally. I love it!

All this was floating around in my head as this person asked me to define what I do. The very first phrase that popped into my head was social justice. As a family we have experienced so much injustice and inequality thanks to a label, a diagnosis. Chatting with a friend during the week who is also touched by the disability lens we agreed that all we want and expect is the same opportunity that everyone else has a right to. We know equality of outcome isn’t always achievable and in some cases extremely unlikely, but the right to be treated the same is paramount. She has avoided labelling for some years now and plans to continue to do so because of the harm she fears it will bring.

Last in my definition was the idea of mainstreaming or inclusion. These words shouldn’t even rate a mention really, not if we just lived by a ‘do unto others’ policy. If society really believed that our kids were on the same par as all the ‘average’ or ‘normal’ kids then why would we need to ‘include’ those with a disability? The idea of Special Education still ‘others’ a minority and pushes them to the fringe.

Let me relay a conversation I had in class the other day:

“Mrs Lovely,” he asked in his most innocent voice, “are there other kids like me?”

“Of course there are,” I answered (He calls me Mrs Lovely because he can’t remember my name. I adore him for it and, in fact, most of the kids call me Mrs Lovely now!).

“What I mean is, when you went to school, long ago, were there kids like me who didn’t do homework? Did they become successful?”


This question from a boy in my class broke my heart.  It made me cry for two reasons. Firstly, this precious angel thought that just for a moment he wasn’t like ‘other’ kids. He felt different. The second reason I wanted to cry was that my boy thought that because he was ’different’ he couldn’t be successful.  Now while he may not be able to do the same literacy and numeracy tasks as most other students, he frequently comes up with the most incredible insights into our lessons, whether it’s English, science or maths. I am incensed to know that another school in town turned him down because he was deemed ‘unsupportable’.  I am grateful every day that I work in a school where the students do not tease or torment those who appear to struggle at their school work. In fact, I’ve seen so many of them band together to help each other that is also brings tears to my eyes.

He asked me what it was like when I went to school - if there were kids like him back then. While I told him I went to school with kids just like him, I honestly can’t remember any. If there had been, I doubt I would have been as tolerant of them as I am now of my students and my own daughter. I don’t remember a Learning Support unit at my schools or a Special Ed unit. I do remember classes being streamed, particularly for maths. My feelings are that students who struggled were most likely sent to the Special School down the road. Historically the idea of special education was largely an exercise of exclusion and until recently many students were institutionalised and denied any access to education.

I pray that the students that I work with will never know the othering that can occur through word and deed. I want their peers to grow up with tolerance and patience and compassion for all those minority groups that are marginalised. However, I can’t expect either group to learn these things unless we first show them how. I can’t expect them to all feel embraced until I start teaching for all of them, not the bell curve. To expect them to take the first step would be counterintuitive.  I will do whatever is in my power to make their future happy, and for life to be as easy, and as enjoyable as it can be, simply because I care deeply and honestly for each and every one of them, unconditionally and it is what they deserve – no less. For they are all special.


PS: My principal is getting me a ‘Mrs Lovely’ name badge! I’m over the moon!

My friends who sit on my desk and help me teach!



Friday, 25 October 2013

Positive Perspective


As with any job, teaching has its good days and its bad. There is so much emotion tied up in the job. I don’t know of any other profession where you need to micro manage and work so intensely with so many others at the same time. I am truly passionate about my job and feel a deep attachment to ‘my kids’. While good morning hugs are the norm from my students (prep through to grade 8), there is nothing quite like going away for two days of conferences and workshops and coming back to students mobbing you for hugs and good mornings. To know that you can and are making a difference is worth getting up every morning. This is why I’m happy to take the good with the bad and that’s exactly how my Friday went.

I had planned a lovely morning of office work to get ahead on some IEPs that are up for review, but this was quickly put on the back burner when I had to put some things in place to help a parent and student who had some troubles the day before. The rest of my day was teaching grade 8 science and English and I wasn’t really looking forward to this. First thing in the morning I’d had to pull some of my 13 year old boys aside and give them a stern warning after they were misbehaving in Chapel. It was a rainy, windy Friday and their home room teacher was away for the day.

Bad Weather + Relief Teacher =  Me prepared for the worst.

Working with teenagers is easy to do when you understand them as biological beings; most of their stupid behaviour can be explained and corrected by knowing that their bodies are programed to make stupid decisions in order to learn from them. As such I tend to be a much more lenient teacher when it comes to discipline and my expectations in the classroom. I can ignore the calling out and forgetting to raise your hand before answering, I’m just glad my students are listening and answering questions!  There was more than just the typical teenage ‘misbehaviour’ and my English lesson was heading quickly downhill. After having to crack down on the rain and wind influenced ‘exuberance’ I had one student giving me the silent treatment, another sulking and a third being somewhat aggressive towards me. All I could think of was going home and curling up under a blanket. What happened next was something I did not expect. It’s why I will gladly get out of bed on Monday morning.

We’re looking at ‘author perspective’ this term. Two thirds of my class couldn’t spell that topic and at least half couldn’t read those words. Trying to teach the same content as their peers but pitched at an appropriate level is a challenge but Anthony Browne’s Voices in the Park makes it much easier. A discussion about why we all have a different perspective started off in a manner resembling removing teeth. I tried hinting and leading but it just wasn’t clicking. I had to explicitly talk about individual experience shaping each of our perspectives. I went back to the picture book and started the discussion about the author’s perspective on parenting. Then, there was a spark in one boy’s eyes.

Moments like these make the years of study, months of rapport building, weeks of planning all worth it.

“You mean the author thinks parents should pay more attention to their kids than their dogs?” One student posed.

“Why do you think that the author has this perspective?” I asked. “What is your proof?”

He mulled it over, ummed and ahhhed. “Cause the picture has the boy hiding behind the mum. You can see more of the dog than the boy”

 Well, I literally jumped into the air with joy. All the kids laughed and then the ideas were flowing thick and fast from all of them. We were able to use a supermarket catalogue as a text and discuss experience and reader perspective. It was just delightful and reminded me of my golden rules for teaching.

1.       The content needs to be relevant. No one is going to put effort into something that is meaningless. It needs to be delivered so the kids understand. I’ll write important words on the board, but most of the concepts are explained through pictures and stick figures.

2.       Engaging kids begins with your enthusiasm for the lesson. If you aren’t excited why should they be? Going into a classroom with a preconceived notion about what will happen won’t allow for the unexpected moments of learning.

3.        Any child can learn – it’s up to the teacher to teach. The candle will sometimes flicker before it remains steady but as long as you are patient, nurture and protect it, the flame will take. It’s the same progression of complexity but some students will take longer to get there, others may disembark the train before it arrives at the station.

 When you are truly connected to another then you are willing to do whatever it takes to see them happy and to succeed. Sometimes you have to sing along with them, other times you need to step back and let them step away from the nest. One day you will be able to let them go, knowing you have taught them to fly. And if they don’t remember the lesson on flying, at least they can sing. The important thing is that you are there in a way that lets them know that they are cherished, just as they are.

Monday, 14 October 2013

The Bell Jar


Sylvia Plath wrote beautifully of the Bell Jar descending and trapping her within a confusing, oppressive fog. Her words are lyrical and poetic and for anyone who has suffered grief or depression you can relate to her writing with the greatest of ease, almost a sense of comfort. A very good friend told me that reading The Bell Jar would make you want to slit your wrists; however I feel Plath is almost a kindred spirit.  Many of us can relate to that feeling of being overwhelmed by our circumstance, trapped inside the bell jar.

For most of us there are times when the jar is lifted. Fresh air fills our lungs and we can see with clarity again. This is very much how I was feeling during our recent holiday to the coast. Holidays are a blessing and a curse for our family. While my darling daughter gets so fatigued by the end of a school term that we start taking half days to compensate, holidays don’t always bring relief. If we stay home to allow her time to recharge her batteries, we, and our other daughters ultimately miss out on those ‘normal’ school holiday memories. Cabin fever sets in and we’re all champing at the bit to go back to school/work and get away from each other.

If we go away, like we did this time, and try to do the ‘regular’ family outings of the beach, the zoo, the movies it can become overwhelming quite quickly and my big girl goes downhill and into meltdown. In the past we’ve had grave concerns over safety near the water and traffic. In the past we have felt isolated and melancholy on holidays when we should have been happy and relaxed. In the past….

These holidays were the bell jar lifting. Going to the pool shared with so many other people and families has always been a little daunting.  Not so this time. In fact, it came to be the highlight of every day. More than one holiday maker commented on our girls’ outgoing nature (read: the flamboyance to introduce themselves to anyone who stood still long enough to listen).  We proved that our middle girl can literally talk under water.  It was such a weight lifted when every person our big girl introduced herself to, child, teen, adult, all introduced themselves in return and struck up a conversation. Our big girl was able to initiate games of pool tag and to encourage others to create a whirlpool in the smaller of the pools.

At the zoo any language, cultural or cognitive barriers were broken when a Chinese tourist took some photos of our big girl with a red kangaroo. Without words, he asked her permission, got her to pose and then showed her the picture he had taken. It brought such joy to my heart to see her being treated so kindly and so respectfully by a complete stranger. There was no judgement on this holiday. There was no ignorance.  There was no bell jar.

Being the incredible nerd and workaholic that I am I managed to squeeze in some planning over the holidays both for my classroom teaching and a coaching project I’m running next year. When I say ‘some’ planning, I think it totalled over 40 pages in the end, oops! That’s what I call a perfect holiday. A balance of play and planning!

While putting together science and English for my incredibly diverse class, I was able to create a program that will allow all of them to learn the same content yet respond at a level appropriate to their ability. I have 4 different marking rubrics based on their differing levels of understanding for just one subject.  I have a lovely list of activities designed to get them experiencing the content, not just passively taking it in. I have designed handouts and teaching activities that allow for my students with poor literacy to still participate. I have readied myself to focus on my students.

Accepting that you are submissive to the life and duties of a full time carer can easily force you into a bell jar of anguish, frustration and bitterness. Very few people ever willingly make the choice to become a carer and I’m sure no one would ever wish to take on the role and live in the jar. We can however be a carer and live outside of the glass dome. There are opportunities to enjoy the beautiful moments and to pause long enough to see the potential life has to offer. 

Wednesday, 25 September 2013

Independence


Since becoming a parent seven and a half years ago, I would often look at my childless brother and be slightly jealous of his carefree lifestyle: the weekend sleep ins till midday, going out to the movies regularly, walking into family functions with nothing but his keys in his hand, being able to watch a tv show of his choosing. I would sigh for that lost lifestyle, the freedom, the independence, then look at my girls and remember all that I had gained, not lost.

The idea of independence though is one that has been mentioned to me again and again recently. I think it is a concept not fully understood by those not marginalised by a disability and is more often than not taken for granted. A number of teachers I have been speaking to have expressed (I won’t say complained of) their frustration at the amount of one-on-one time students with a disability require, particularly those with an intellectual impairment.

My first reaction is incredulity. “This is my life!’ I shout at them in my head. As a parent of someone with an intellectual impairment I live this ‘one-on-one’ support 24-7. I don’t get to go home at the end of the working day, back to my independent life. I live a life where someone is completely dependent on me and will likely remain that way is some form or another. There’s no respite, no escape, no end point, no knock off time where parents or carers can just end their working day and down tools. I get disheartened when those who have chosen to help and guide children put some of them in the too-hard basket because their ability to be independent is limited.

I wonder if these teachers stop to consider what that ‘one-on-one’ support means when the child goes home. For many parents and carers in becomes like a split personality. You no longer keep track of the needs of just one person, but two. I don’t mean in the simple way a parent looks out for a child or considers their well-being. I mean an intensely intimate knowledge of another person’s needs, long-term, short-term, immediate. Toilet training is hard for almost every parent, but imagine having to be that intensely aware of another human being’s bodily functions and needs, always.

What they eat, how much they eat, is their body functioning well, have they had their medication, how is their coordination and muscle strength, is their mobility hindered in any way, are they tried mentally, are they tired physically? So many questions to be constantly asking about another human being. Imagine having to think about the physiological needs of two people (yourself and another), but now add in the fact that you have to stop and think about their thinking patterns, trying to understand how they are experiencing a situation in order to help them negotiate it. On top of this, add in that you need to think about their safety, their happiness, their treatment by society. As I travel during these school holidays I can promise you I don’t get to finish that one-on-one support at 3pm every day.

Just yesterday I watched a documentary on how adults with various disabilities negotiate having a sex life. In some instances parents needed to be responsible for the sexual well-being of their children. That takes looking after another’s physiological needs to a whole new level. You can understand why I get frustrated at the teacher who gets bothered by the intense level of support needed in a classroom for the duration of a double lesson.

As educators we need to be doing what we can to help every student achieve independence. We want them all to be productive members of society. Eventually the students with disabilities we teach will be the people helping us at Target, or serving us our coffee, or working in admin with us… or thanks to the lack of effort put in by their educators they could be on welfare limited in their ability to be independent because they were not supported to. I came across the interesting fact a few years ago that every $1 spent in the early intervention of a child with a disability saves $6  for the rest of their life. Imagine if we translated that to time. Maybe every minute spent in patience now could save us six minutes down the track. We could just sit back and moan about how students with disabilities are a drain on our time in the classroom, or we can do something to give them the independence they so rightly deserve.

Friday, 6 September 2013

Comorbidity

Though Simon and Garfunkel would have us believe we can be an island, or a rock, it simply isn't true. It's even less true for those living a minority or marginalised life. In some way or other, we all live with comorbidity, that is two or more diagnoses along side each other. I'm being quite liberal here and using the medical term with a bit of poetic licence.

In my case, we have a literal comorbidity of Down syndrome and Graves' disease. We need to keep in mind which is responsible for the symptoms that impact daily. Metaphorically though, we have comorbidity with her youth, no family in town to support us and limited medical/therapy services in our town. We are not an island, isolated from the people and services around us. We have many blessings included in our medical and social diagnosis, wonderful friends, supportive school and understanding employers. All of these things contribute to the degree of marginalisation we experience.More of one, less of another and it can drastically alter the path we walk.

I recently, and randomly met a mother who was beginning her journey through getting a diagnosis for her young son. It was nice to be able to offer some comfort as she went through the initial stages of grief and then took up the torch to fight for her boy. While her son didn't end up with a dual medical diagnosis, she experienced comorbidity with no support, friends or family in town. Even her husband worked away. She was having a tough time with her son's kindy teacher.

Her story is an example of how we all bring our own prior experience/baggage to this wonderful journey of disability. Each of us travels a unique path. Even members of the same family will experience their own comorbidity. How my daughter's experience their sister's disability will be very different to how I experience it. My brother is a wonderful advocate in the public sector, though his experience of disability of the ground floor is limited. I'm sure many people think that because I'm a Special Needs Coordinator that I have most, if not all, the answers for my daughter. Truth is, I still grieve, I worry, but I rejoice too. She did her first class performance this week. Spider in the Shower will be off to West End I'm sure! (On a side note while Imogen may not be the best reader in the class, she could easily have been the understudy for all the kids in the class as she knew EVERYONE'S lines!). Ultimately we are neither islands or rocks, but all threads of this social fabric.

With the 2013 Australian election looming tomorrow, we all have a chance to impact on our own personal comorbidity. I won't be using this forum to sway you to vote one way or another. Your vote needs to represent you and your circumstance. It is a chance for us to perhaps lessen the metaphorical social comorbities we live with, and perhaps improve the medical comorbidities as well. Make it count.



If the politicians can post selfies, I can add one of Imogen's MANY selfies!

Monday, 5 August 2013

Wanting, Doing, Being


I think one of my personal flaws is that I’m impulsive, but I also see it as a positive. I am a person of action. Too many times as a parent I was told to ‘wait and see’. If I had waited then my daughter would have gone for another 6-12 months not being able to hear anything. If I had waited and dismissed her behaviour as normal ‘Downsy’ behaviour, her thyroid would have burnt itself out. I believe in being proactive and tackling life face on.

Recently I have encountered three other personality types that seem to emerge in the face of disability. The first is the apathetic individual. I’ve met so many teachers along the way who seem to do less than nothing. They fail to see the marginalisation that occurs, they are oblivious to how much more effort is required from those with disabilities and their families. Apathy is almost forgivable because it comes from ignorance most of the time. It isn’t until you experience the life first hand that apathy becomes passion. Hopefully over time this group of people will learn as they grow older. As we enlighten them and welcome them into our world, they will come to understand that we are all in this together.

Less forgivable is the actively unreceptive individual. In schools this personality can be found in both administration and in the classroom. With their dismissive attitude they willingly deny those with disabilities their God given and legal rights. My anger takes on a physical manifestation when I hear stories of parents trying to enrol their children and not even being able to get past the reception staff. I have heard many of these stories in the last few weeks. I cry with the parents as they express their hurt and confusion, I explain to their child that the fault doesn’t lie with them, but with the adult who have failed them. The problem has been so rife of late that I have taken steps to remind certain individuals of their legal obligations in not discriminating when enrolling new students.

The group that is driving me nuts at the moment is the group of people who happily shake their fist and get angry with me. They talk about doing things differently, say that teaching every student to their ability is not a dream, but a reality we can create in the classroom. Equality of opportunity for all is achievable in their eyes. ‘Let’s try new ways of teaching. Let’s use technology’ they say. Then come the morning they do the same old thing. Nothing changes. When students can’t complete the set task they commiserate and say they will plan better next time. Some students are bored, others disengaged. They aren’t able to be their best.

The reason I’m so frustrated by this group is that I think they hold back the cause more than the others. Ignorance can be remedied with knowledge and compassion. Discrimination can be corrected by law. However, it is hard to gather momentum when others are dragging their heels. The old idiom of leading a horse to water, well, I guess we just need to keep leading them to newer, cleaner watering holes. It would be easy to have others take away our forward motion but if through consistency we can inspire others, drag them into the light, then forward we shall go, better we shall become.  I spend my days wanting better, trying to do better. I will spend my life trying to be better.

Wednesday, 10 July 2013

What comes after the sausage factory model of education?


Monday was my first day back at work after the holidays, and lucky for me it was a student free day. CPR course in the morning and then office work for the rest of the day. In fact, Tuesday was a student free day too, though it wasn’t quite as crusiey. I had two workshops to deliver. I love my job no doubt, and I want to share what I know and help my teachers be stronger and better resourced, but to say I give these workshops with complete confidence would be a lie.

My first concern is always that I will bore the socks of the teachers and tell them things that they already know. I mean, a couple of them are straight out of university, surely they will have been taught the best teaching practise possible. What more can I offer them?  Well, I can offer them chocolate, that’s what!

I planned to show a rather old but very enlightening clip by the visionary Ken Robinson, from there decided to bang on about one of my favourite pedagogies, Universal Design for Learning (UDL). I unpacked it and hopefully gave enough examples to make it practical for the teachers to implement. I adore UDL because it moves away from ’differentiation’, the idea that you plan a unit of work for the class and then make it different for the kids who struggle and the kids who need extension.  UDL inspires teachers to think outside the box about the content they deliver, how they make it interesting for kids, and how they assess a student’s understanding of what was taught. I tell teachers that in its simplest form UDL is about making the lesson interesting and relevant to students. At the extreme end, if a student can express his or her understanding of medieval Europe through interpretive dance, then there is no reason a student can’t get an A+ for doing so. (The topic of a 5 point reporting scale will be a blog of another day!). I strongly encourage you to go to the CAST website and read up on UDL. Suggest it to your child’s school and teacher.
                                                                             picture from  http://cast.org/
I also gave a workshop on executive functioning and sensory processing. Understanding these two things, these essential elements that help to make us unique individuals, regardless of ability or diagnosis, gave me such an insight into not only myself, but also into the students I teach. I am a firm believer that there is no such thing as a naughty child and researching executive functioning and sensory processing (amongst other things) helped me to see clearly for the first time.

At our school in one secondary class we teach everything from Foundation (Prep) through to year 9 or 10. The classroom teacher was finding the diversity a bit of a struggle, and rightly so. The Principal has even given me an extra day of work just to help support this class. I am terrified about being back in the classroom but delighted at the chance to challenge myself. Can I actually do all the things I advise my teachers to do? I quickly called in the big guns to help and a week ago I had the privilege of consulting with a lecturer from our local university, specifically about this class. While he certainly gave me some helpful ideas and frameworks to follow, like the June Maker Model of Tiered Assessment, I was both reassured and dismayed to hear that in his honest opinion, we are already doing everything we should be doing for this class. I plan to share this second framework in my workshop tomorrow, plus throw in a little of Gardner and Bloom as well. Oldies but still useful.

But if what the lecturer said is really the case, and I feel like I have nothing new to offer in my workshops, then what hope is there that we can teach for the 21st century? How can I do better for my students? For my own daughter?  I think I am simply projecting my own self-doubt and pursuit of teaching excellence onto my workshops. The nature of my workshops incorporated all of the teaching strategies I am trying to inform my teachers about.  If nothing else, we will be working together, as a team of teachers, talking about how we can do better for our students. We will be brainstorming, collaborating and striving to do better. We are supported by one of the most amazing Principals I’ve ever had the blessing to know. He has a great passion for true inclusion and is a delight to work for/with.  UDL plus tiered lessons and assessment should give us enough to keep us going for the rest of the year. Incorporating it into planning and having a supportive network of teachers will be imperative. As will be the chocolate!

Wednesday, 26 June 2013

It's a matter of geography

In those first few days post diagnosis, my head was spinning with so many new thoughts. Brochures and pamphlets were thrust into my hand along with a robotic pat to the shoulder. When I finally got home (after the emergency drive to another town to have a scan of my daughter's heart, no major holes thank goodness), I finally got the chance to sift though the mountain of information and start the search for answers.

Google was a good friend back then. I remember how I discovered that our high backed office chair was good for both breast feeding and as a make shift rocking chair. I remember being horrified by some of the things I read, like the statistics pointing out that my gorgeous infant had been born into the highest risk demographic for sexual assault. Who wants to be thinking about that when they have a newborn in their arms?

Finally, after so many Google searches, I stumbled upon Holland. Holland gave me perspective, and hope. I held onto the idea of Holland for a long time, though as the years marched on it seemed further and further away. It wasn't quite right anymore. It no longer described us.

This week a friend of mine posted a link to a new take on Holland. Another parental perspective. When I read it I felt such an affinity for what the author was saying. The anger and despair that so often chokes me was tangible. Our visit to Holland has been anything but scenic. We didn't draw the short straw with many of the normal health concerns associated with DS, my perfect daughter's heart has the tiniest of murmurs, her ECG was fine, she was blessed. When she was in Prep we found out that she has Grave's Disease (hyperthyroidism). Usually people with DS are more likely to have hypothyroidism, but my poor family genetics meant my little girl is an exception to the rule (Grave's is in my family 3 generations and counting). The toll this disease has taken on our little girl has made living with a child with an intellectual impairment just that little bit harder. Her little body struggles to keep up with day to day living and she can be more emotional than a hormonal adolescent.

I know that Holland would still be possible even with a dual diagnosis. The problem for us though, is that we are alone in Holland. It's as though there was a zombie apocalypse just before we got here and now that we've arrived, even the zombies have all fled. No one is left to lend a hand. We are not in a position to rely on family for respite. Nannies and babysitting is costly on top of all the normal expenses associated with raising a child with a disability. We almost never get time out as a couple and if we do we're back home within a few hours. I can't remember that last time someone babysat over night.

The end result of this is that at time I feel very worn thin as a human being. I am filled with rage, I am resentful, I am stressed. It has taken it's toll on every relationship I have. I bury myself in my work because it brings me great joy. I can achieve things and see an end in sight with the projects I run at school. At home it can be hard to remain patient with all 3 girls, especially when communication can be difficult at the end of a long day. All this leads into the beautiful spiral of shame and guilt. Holland never told me about that.

Next time you see ANY parent struggling, whether it's the mum doing grocery shopping with the 10 year old having a tantrum or the dad at the park with a toddler screaming because someone touched his truck, stop and spare a thought for their bigger picture. If we all stopped and helped that mum pack her groceries into the car, or struck up a conversation with the dad about how he's doing, we could be making a huge difference in the lives of an entire family. It is impossible to see every diagnosis or know what support network a family has. It is possible to make an impact by doing something. It is possible to be a part of a support network for those around us.

Friday, 24 May 2013

Words that go bump in the night.

Life in the world of a marginalised minority has the blessing of opening your eyes to something which can be truly beautiful. Life is a slower pace in Holland and the joy in that is you get to see all the little things as triumphs, things most others would take for granted. I can remember the day my big girl first used a pincer grip to pick up a sultana, the first time she stood on her own (incidentally also the time the OT slapped my hands away because my first reaction was to reach out and 'catch' her). I remember the first time she used an adverb in context.

While there can be beauty and blessings in this life, it should not be one that is marginalised, yet it is. I know I've written about language before, but words are not just my living (so many funding applications, curriculum documents, workshops, meetings with staff/parents/case workers), but words create the context in which my daughter, my family, my students and I exist. Speaking with a friend and colleague who was identifying a family at school she had been talking to, she named the parent, the child, then went on the qualify that he 'IS Aspergers or something like that'. I was already aware of a diagnosis, it is my job after all. But for this teacher to use it as a defining feature of who this boy is and who his family is, is at the heart of the problem.

I am confident that this boy is a wonderful son, he's a great big brother. He has talents, strengths, weaknesses and is a complex individual. Using a diagnosis as THE defining feature about him, the first thing anybody should know about him, how he is introduced in every situation is what will marginalise him. It says that he is 'other': Not the same as the rest of us. Before you know anything else about him or his family, you need to know it in the context of him having a diagnosis.

At work this week I was to give a brief workshop to the staff about IEPs. Due to the delights of technology (my Prezi was so much more inspiring than any old PowerPoint!) I didn't get to do my workshop so instead I took 10 or so minutes to get on my high horse about PC language. I didn't cry when I recalled some of the things that have been said to me about my daughter so I consider the event a personal win.

The point of my rant is that language we use is a display of the attitudes we hold. It signifies to all what is on our minds and in our hearts. If the language we uses highlights stereotypes and generalisations, it shows we do not consider a person to be a unique individual, a characteristic we would bestow upon those who don't have a label or diagnosis.

It also impacts on the way we view families. If the defining feature about the family is the one individual with a diagnosis, we reduce those around them to little more than carers. Please don't get me wrong, I'm not saying those who are carers aren't amazing people, but they are more than 'simply' or 'only' carers. Just like the person/child with the diagnosis, those around them are unique individuals who have more attributes than being related or connected to someone who is 'other'.

Words have such power, whether spoken or written. Words have the power to create and the power to destroy. What a dream it would be for words to create a world where there was no 'other'.

Wednesday, 3 April 2013

A little challenge goes a long way

In my professional role I have often felt like a fraudster. With little time spent in the classroom actually teaching what can I possibly offer the teachers I am meant to provide advice to? What credibility do I really have?

Oh sure, it's easy for me to say 'Differentiate your plan. Include every learning style in an activity. Make sure your assessment doesn't set anyone up to fail. Teach to their ability'. I am able to offer strategies and suggestions, resources and recommendations, examples and explanations. But where does it come from? Does it carry any weight?

My journey to Special Ed Coordinator has been a fairly standard one I now find out. Girl studies to be a teacher. Girl spends some time in a classroom. Girl gets pregnant. Girl gives birth to a beautiful daughter. Girl's life gets turned upside down with a diagnosis. Girl studies to be a SE teacher. I'm not alone in this path. It happens more often than I used to believe. I used to think I was unique.

From the time my daughter was 2 weeks old I have been emmersed in the world of SE. I used to take my daughter to our local Early Childhood Development Centre, run by Education Queensland. There we were surrounded by an OT, a speechie, an SE teacher, a physio. It is from those amazing ladies that I learned the most important trick of the trade. When you invest yourself emotionally, you make a difference. When you are willing to give your best, to give everything, to see something succed, then you have taken the first step to being a good SE teacher. (There are plenty of mediocre ones out there too).

I have been to so many workshops, professional-development seminars, read so many text books that I have a knowledge bank that even I am sometimes astounded by. I've written so many thousands of words on the image of a child with a disability and the context they grew up in it has become a part of my psyche. I've also investigated the Australian Early Years Framework and the Australian Curriculum to see how they impact on students with disabilities. I've done the groundwork.

In my current role I am working with students of extremely varying abilities, not just across the cohort, but also within each student. For the first time since becoming a SE Coordinator, I am challenged by some of the questions being asked of me. I'm having to come home and read and research again, in order to go into work the next day with an answer. I was beginning to doubt my validity in my role.

This was however, until I took on the role of planning for an alternate program for a student. I believe wholeheartedly in mainstreaming, but each student should still be taught to their ability. I couldn't count the numbers of times I've said 'I know it's more work to differentiate (I actually subscribe to a UDL pedagogy), but it's just good teaching' without having really ever done it myself when I was a classroom teacher.

I have actually enjoyed writing an integrated unit (Eng, Sci, Maths) for a student where each subject draws on content descriptors from DIFFERENT YEAR LEVELS in the Australian Curriculum. I have enjoyed working with the classroom teacher to create a wholistic program which compliments what is being taught in the 'mainstream' class. It's by no means finsihed, but then there's still a week and a half of Easter holidays left, right? :p

I feel validated again. I have been able to apply my theory to practice. I have been able to practice what I preach. Inclusion is not just a buzz word, not merely a possibility, but what every students is entitled to. Inclusion in school, inclusion in the community, inclusion in the workforce.

I watched this video this morning on Facebook, posted by a group called Circle 21. There is not a day that goes by that I don't hope for this, not just for my own daughter, but for all of  'my kids'. The quote from the video that still resonantes: "Even though I have Down syndrome, I see myself as a real person".  I work hard every day to make sure my students and my daughter are treated as real people, they deserve no less.

Video: Extra Ordinary

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: 

Unless

and 

Respecs