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

Thursday, 27 March 2014

You're not allowed to...

You're not allowed to work.....

That's what the man from Centrelink (the Australian welfare agency) said to my Bear this week. Effectively, he was telling my husband that he had worked too many hours to claim the carer's pension for looking after our daughter. Now this would be fair enough if we were earning six figures maybe, but we aren't. My Bear works two days a week, maybe three. He is our stay-at-home dad and does a remarkable job at juggling all the appointments, treatments, therapies, schooling etc... that comes with the territory.

As parents, in our specific situation, we are not able to both work full time. One of us needs to be there as a carer for our big girl. As a family, there is so much we simply can't do as a direct result of the Down syndrome.


To be told that you're not 'allowed' to work is simply insulting. How is being a carer for another human being not working? And why shouldn't we be 'allowed' to work just because our child has a disability? This simple minded person on the other end of the phone has no idea what we can and can not do. He has no idea what looking after another human being is about.

Does he know what it's like to dream of travelling the world in retirement, just to remember that you'll be booking three tickets?

Does he know what it's like to plan to renovate your home, only to have it in the back of your mind that the extension probably needs to be converted to a granny flat at some stage?

Does he know what it's like to pray that your daughter finds a good man who will love her for who she is, but know in the back of your mind there's a high likelihood you'll have to parent your own grandchild?

And all these thoughts before she was even a day old. 

I do not resent having any of these imposed on my life. Having a child is always a roll of the dice and I wouldn't change our family for all the tea in China.  I do resent people in a profession that directly impacts on our well being being completely insensitive to what life with a disability is like.

Don't make it sound like caring for another person is less noble and respected than holding down a 9-5. Don't limit us, or our big girl with your preconcieved notions.

Saturday, 22 March 2014

Celebrate World Down Syndrome Day!

So many things running around in my head today - there's plenty of material for a blog. Instead I'm just sitting back and chilling with my perfectly imperfect little family. Bliss.

I did make the local paper, they even gave me a byline! My first ever!

If you're on your computer click here!

If you're on a mobile click here!

Happy World Down Syndrome Day! 

Sunday, 16 March 2014

The earlier you start....

I'm writing this on a complete high at the moment. It was my birthday this week and my family and friends have spoilt me no end. Time spent in good company is medicine for the soul. I can't express the joy I felt at having a yard full of friends and their children and watching the kids create little performances on our home made stage.

I'm also on a high because our garden has been transformed even further in the last 24 hours. After a week or so of preparations we have worked like Trojans to put in a retaining wall to terrace our lawn and install a floating wooden bridge from our driveway to our back entertaining area. Not to mention my Bear built me a gazebo (with curtains!) for my birthday. Visiting The Laurels (a formal garden in our town) and speaking to the amazing landscape architect there gave us so many ideas about how to improve our time outdoors (I'm also having him do our garden at the Kindergarten!). I'm truly feeling overwhelmed with blessings right now.

Working in our garden, earning myself some pretty nice blisters using ever garden tool imaginable, I was reflecting on how much has changed in our yard. We started with a bare block - not a single tree in sight. In the beginning we had no plan drawn up for us, little knowledge of gardening at all really. Very much like how our life with our big girl started. A completely blank slate.

When we first moved into our home we knew straight away we knew we wanted shade in our yard, so we planted shade trees. Today we are able to enjoy time outside with our girls because of the 'early intervention' we made with our back yard.

The early intervention we gave our big girl has many parallels. We wanted somewhere for our big girl to explore her own imagination, so we built her a tree house. She needed to do her physiotherapy at home, so we filled our yard with equipment. Our big girl needed to work on her core strength so we built her a driveway so she could use her scooter, bike and skateboard at home. She has had surgeries and therapies galore to improve the outcomes in her life. The sooner these we done/implemented, the sooner she could reap the benefits.

In those early days of researching what Down syndrome actually meant I found out: that life expectancies had risen sharply in the last few decades, that health risks were on the decline thanks to modern medicine, that independent living was an expectation now where it hadn't been as recently as the '70s and '80s. We no longer place children with DS in institutions. We provide them with as much therapy and support as we can, as soon as we can, and the end result is a much better opportunity of outcome. I can not overstate how blessed we were to start early intervention with our big girl at the age of two weeks, daunting though it was. Without it, we wouldn't be where we are today.

Through my Masters I learnt the fiscal benefits that $1 spent in the first 5 years can save $6 in adulthood. I also learnt about all the 'at risk' categories, and now I am seeing them in the flesh rather than a text book. Low socio-economic backgrounds, premature births, emotionally dysfunctional homes, diagnosed disabilities, the list goes on. The thing they all have in common though, is that you can never start soon enough.

Through my personal experience and that of many close friends I have learnt that early childhood is such a critical learning period, it simply can not be underestimated. The lovely teachers who helped my then baby girl become the confident, literate young lady that she is today are the same teachers who in part inspired me to specialise in Special Education (the other part of inspiration came from my big girl!).

To have plans drawn up of what we would like our garden to look like but never do anything about it, to never do the hard work, would result in nothing. The same can be said for special education in general. We know where we would like our kids to be, but if we don't do something the moment our intuition tells us something is up, then we risk losing our best window of opportunity. The starting point can be an official diagnosis like ours was, or
  • it could be knowing your bub was born premature, 
  • it could be seeing your boy doesn't fit in at playgroup, 
  • it could be hearing the kindy teacher say they're awfully quiet at kindy,
  • it could be your girl is late to hit all the milestones
  • it could just be your parental intuition,
the point is it doesn't matter what, but the when really does matter. 

As our needs have grown and changed, so has our garden, but if we hadn't planted a single tree, we'd still have nothing. If I want my garden to look like the Laurels in a few years, I need to be out there now, rotating my veggie patch and trimming the hedge.

March 21 is World Down Syndrome Day. The sooner we start to educate and eradicate the ignorance, the sooner we will live in a world where others can understand what it's like.

Friday, 7 March 2014

My daughter is NOT a word.

These last few weeks have been challenge and a delight all rolled into one. We moved to this idyllic country town for work, but instead found family. People we really love and who love us in return. One of the true pleasures of living in a town where it takes five minutes to drive from one side to the other is that it makes the spontaneous visit so much easier. It is a common event to organise an after school play date as the bell rings to let the kids out. It's easy to change plans and visit a friend. It's easy to say 'stay for dinner' and spend hours in good company. We've had so many visitors lately my Bear has playfully reffered to our house as a drop in center. We couldn't be happier.

One of the not so obvious reason for being happy about the constant stream of people that others might see as intrusions is that we have an opportunity to share the intimate details of our day to day life with others - some are a celebration, others are a commiseration, but it's all honest. We get to dispell the unknown about life with a disability by sharing it with others, and by dispelling it, perhaps make our big girl's life a little bit easier.

You see, the ignorance that I had prior to her coming into my life is still rife amongst other people. Just because she has educated me, brought purpose to my life, and taught me to love beyond measure doesn't mean that everyone else has come on the journey with me. Though I've taken it upon myself to try and spread the word, I still have conversations with teachers who refer to 'the autistic kid', even after we've just had the talk about 'child first' language. Thankfully, those in our close circle are no longer ignorant, because they get to know, get to understand.

ignorance = lack of understanding, fear, hatred, intolerance, impatience 

knowledge = understanding, support, love, opportunities

Ignorance breeds fear because we are biologically program to fear what is different as a matter of survival.  Not knowing about life with a disability can be forgiven as not everyone has that specific life experience.  HOWEVER, once you know you've no excuse, only your own choice to be hurtful.

 When my brother and I were children we grew up calling each other 'mong'. When we said the word it was to mean the other person had done something stupid, that it was worth pointing out that you had failed at something. We said it to hurt the other person, to make them feel less (weren't we great siblings!).  While we never used the R word*, we certainly said 'mong'. I have no idea where we picked it up from but I know we perpetuated its use.**

After my big girl was born, just a few weeks later I was talking to my brother when the word was used, more affectionately than in the past, but still to mean that one of us had done something rather stupid. I was hit by the sudden veracity of that word. The guilt and shame that ran through my body was a tangible physiological experience that I remember vividly at this moment. In an instant my ignorance was gone, my lack of understanding, my intolerance, all gone. In that instant I got it.

When I was 28 weeks pregnant with my little Viking five years later I was having an ultrasound where the sonographer asked me, 'Do you really want to risk bringing another Mongoloid child into the world?'.  There are simply no words to express how I felt at that moment. That this complete stranger could assess my big girl's life as not being worth living. That he could use THAT word to tell me he thought she was LESS than everyone else. After the complete shock had worn off I called his company only to find out he was the manager of the facility. I called his head office to try and educate them about this highly inappropriate word. Two weeks later I received a phone call from the man in question, JUSTIFYING his use of the word. Even after being given an opportunity to know why such a word would be hurtful, he still chose ignorance. There simply is no reason and no excuse to choose ignorance, but many still defend their choice to hurt others with their words. How many parents of children with disabilities need to blog before they'll get it?

I will continue to try and dispel the ignorance. I've no choice really, because I refuse to have my big girl go through life ever being made to feel she is less.

*It is time we Spread the Word to End the Word™ and build awareness for society to stop and think about its’ use of the R-word. Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. The R-word is just as cruel and offensive as any other slur. Visit www.r-word.org to make your pledge today.

**  I need to add that my brother is totally awesome and a huge supporter of my big girl. He has been my shoulder to cry on many times and has been the first person I've turned to for impartial advice when I've needed to fight for my girl. Word bro.

Saturday, 1 March 2014

Allow me to explain through interpretive dance!

I can't start blogging this week without huge amounts of gratitude to all the amazing people in my life and my town. I've had so many people come up and tell me what a difference I've made for them and their little ones- parents from last year's school and schools from long ago. In my current role I've met people for the first time in a professional context and straight up they say to me that they can tell my heart and soul is in special education. 'You can hear it in the way you speak so passionately' was the feedback from one professional. I've been in touch with educators around the world thanks to my blog and Facebook page plus I've been asked to consult for a couple of other educational settings! It is great to exchange ideas and learn from others. Wow, simply wow. What a week filed with positive affirmations. Thank you.

It is because of this that I really want to give something back this week. Something practical. While I was dancing and singing with my little ones this week it struck me; the need for music and movement in learning. I guess it is something we take for granted with early childhood as being a necessity, but who is to say that it isn't needed all the way through to secondary school and beyond? I guess the best example of the way music can become etched in our memory is in the way songs can makes us remember those great moments of a relationship and those songs given to us by others in laughably bad relationships we'd rather forget.  Most of us would have a break up song or two, right? What memories and feelings do they evoke? In university I would study for a subject and listen to only one album, then in the exam, I would remember the songs from the album and it would help me remember what I had studied!

Music can absolutely be used that way in education. Teaching Yr 8 maths last year I found this little ditty which helped my kids enormously:

Hey diddle diddle, the median’s in the middle,
You add then divide for the mean.
The mode is the one that is the most,
And the range is the bit in between.

I didn't write it, I won't claim credit for that, but it did prove invaluable in help my guys remember the difference between mean, median, mode and range. You could hear them humming the tune during the exam.

When giving instructions I would (and still do) sing them and the tune, the rhythm of the instruction would stick much more easily than simply saying it. You have to be able to be self deprecating or have a great singing voice and I know I'm the former rather than the latter!  How easy is it to get kids to pack up when you sing 'Everybody pack up, pack up, pack up, just like me!'?

There is a large body of evidence that suggests we have a kinesthetic memory too - that is movement can help things stay in our memory and movement can help us remember that information. Certainly visual instructions are retained in working memory longer than verbal instructions, so tapping your head when you asked kids to put their hat on or miming opening a book when you ask students to open their maths book will help them follow the instruction and really requires no extra of the parent/teacher. I've had kids act out cell division in science classes and had the physically demonstrate Newton's Laws of Motion. The answers on the exam paper showed that the concepts had stuck in their memory!

The idea that kids learn by sitting at desks in neat little rows belongs in the prehistoric British boarding school model that is- in the past. We know better today thanks to leaps and bounds in neuroscience and it's a wonder why more isn't taught to beginning teachers as part of their degree.

You might even find that the music and movement will have the dual effect of assisting those students with sensory processing needs. I know that I for one adore getting to dance around with my guys several times a day as it helps me enormously. The endorphins ensure that every day is a good day! My staff have even commented that I'm not too shabby on the dance floor but I'm doing it for the fun and learning! How awesome is my job to be paid to dance and sing and teach all in one?  It helps to meet sensory seeking needs but may not work for those with sensory sensitivities, so again, finding a balance is needed.

You don't have to get kids doing an interpretive dance to every new topic you teach, nor do you need to deliver everything as though life is a Broadway musical (wouldn't it be grand if it were?). Just adding a little bit of variety is the key.  A little but of music, a little bit of movement and you will create memories that will far outlast any break up song!