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

Sunday, 19 October 2014

Why blog?

A wonderful friend of mine is a million things wrapped into one. She a mother, an educator, an administrator, a photographer, a business woman, a mentor. She's committed to her faith, she seeks out best practice in her parenting, even if it is 'alternative'. In many ways she is my inspiration. I know she is to many of her friends.

I love reading her blog because it makes me feel like I have company of this crazy journey. In moments of difficulty I take solace that I am not alone and in moments of joy I feel a part of that happiness. This wonderful mum is currently raising money for The Junior Diabetes Research Fund by selling some of her fantastic photographs on canvas.  She is so eloquent about why she is doing this and it made me wonder, why do I blog? Why do I have a Facebook page all about my daughter based solely on the fact that she has a diagnosis?

With October being World Down Syndrome month it's a good time to reflect on what I'm actually achieving. When Imogen was just a baby we had so many negative experiences of people saying 'What's wrong with that?', 'Don't worry, all kids with DS are happy' or 'She'll love music'. There have been so many negative expectations of her - her ability to achieve milestones, her ability to participate in regular schooling, her ability to do pretty much anything.

We knew that no daughter of ours would be limited by social restraints, particularly when they are based on stereotypes. I promise you all of my daughters will be able to change a tyre, mow the lawn and use power tools before they move out into the world. But here I am applying stereotypes now.

Initially I blogged because I needed a way to vent the frustrations I felt because of the limiting stereotypes forced upon us and Imogen. Now I blog because I feel we have been blessed with a wonderful opportunity to debunk those misconceptions and also to explain that yes, things might be a little more difficult, but never impossible.

Putting our lives out their has made me a much more reflective and contemplative person and I feel better for it. It has brought new friends into our lives and new understanding into theirs. It is amazing to see so many people from our little country town following us on Facebook and here is the reason it thrills me. Next time they meet Imogen in town they will have better expectations. They will know what it has taken to get her to that point in her life. They will understand how hard she has worked to achieve what she has and how her health impacts. In short, sharing now, means a better world for her tomorrow.

Even if you are reading this on the other side of the world (as many of you do!), then perhaps you wont feel alone in your travels, the difficulties and the joys. Perhaps next time you see a child with a disability, you'll know its more important to know their name than their diagnosis. Maybe you only just learnt that October is Down Syndrome Awareness Month. Possibly this post made you more aware.

What I would like to do with our family is to wrap them up and build a protective wall around us. To create a screen that allows them to experience life in privacy. To shield them from any negativity that is thrown at us.  It's silly but I feel like we are literally doing that by building a new front fence and arbour. A beautiful but functional little motte and bailey. It will never stop every bad thing though. The only way to combat negativity is to face it head on with love and understanding. I know that not everyone who reads will agree. And I'm ok with that.

Not quite finished yet and a path being started this week.

One of only a few PINK wisterias in town! Just a twig now but give it a few years!

There's no reason the girls can't make their own fun while the building is going on.

Saturday, 4 October 2014

A diet of dust and air...

When we first found out about Imogen's Down syndrome we read widely. We read every brochure, pamphlet, book and website we could lay our hands on. We needed to understand what was happening and what our future was to be. Why oh why didn't we do the same when she received the blow of a second diagnosis? I think the overwhelming grief that presented itself for a second time simply floored me. Grave's disease runs in my family and honestly, it's just horrible. I'm happy to say we've kicked DS to the curb, we own it, but Graves is this nasty little unwanted house guest that just won't leave.

 Initially we thought we were onto a winner with a pediatrician who used to be an endocrinologist. After 2 and a half years under his care we just felt like we could be doing more. Last year we decided to switch to a endocrinologist with the down side of hours of travel to see her every few months. We were told the medication we had been using was out dated and were given new scripts. I remember sitting in my office at work joining in the consult via phone and just having the world spinning around me again.

A year later, and we are still experiencing thyroid storms, sometimes Category 1, most times a 4 or 5. Having seen my big girl struggle so much this term has broken my heart over and over. Recently someone called my life 'charmed'. I wish they knew the truth. My Bear and I have reached breaking point and we are desperately looking for something, anything that will help.

If we had read as widely on GD as we did on DS, we would have known much sooner of the links between food and thyroid function. The guilt for having not investigated it sooner weighs heavily. Our two younger girls are already dairy free and as we always tackle things as a family unit, we are now gluten free, dairy free, iodine free and potentially egg free. I love my cooking, but this has become a soul crushing stress, tears upon tears have flowed. I feel that all we have left to eat is dust and air. Dust anyone??

We have experienced dietary issues when the girls were younger and found the Failsafe Diet by Sue Dengate to be a lifesaver. Both our big girl and middle girl reacted badly to salicylates and for Imogen in particular this presented in behaviour. Within 48 hours of a new diet we went from 2 year old terror to an angel. I should have really learnt from this experience. Even though I have shared that learning moment to so many other parents and spoken to others about the influence diet has on behaviour, I wasn't hearing my own words as I watched Imogen slowly falling apart.

We have our Thermomix demonstration booked for later this month and we'll see if that is our ticket. In the meantime I'm delighted to say that 3 weeks of a new diet means I have my big girl back. Our holidays have been filled with the giggles of three girls playing happily together. Social skills are difficult for our big girl when her brain is fogged up in a thyroid storm. I can again have conversations with Imogen and you can't know the joy in hearing her voice again as when she is sick or fatigued, she can loose all her language.

I have a steep learning curve ahead of me in retraining all the cooking intuition that I've gathered in my life. My gluten free food hasn't always been well received in the past but eh, you get that. I'm loving the new challenge set before our family and know that in time, it will simply be another blessing.