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

Wednesday, 31 December 2014

Goodbye 2014!


Such an incredible 12 months. From low lows to high highs. A year ago I could not have imagined being where we are now,  but we had the technology, we could rebuild, a better, stronger, faster family - and we did.

Better than we were before, we are the 6 million dollar family.

After what feels like 7 years of famine we have had a year of plenty this year. The blessings have poured down on us, our careers, our house and our children. Our One Little Word - Together - has done us wonders as there has been nothing that we have undertaken this year that didn't begin from that mantra. Our garden is unrecognisable compared to 12 months ago and soon our house will be unrecognisable as building renovations get underway. We have strengthened friendships with incredible friends and forged new friendships with incredible and inspiring people in our town. 2015 is looking even better. Next year is another year of learning how to manage this journey.

I did not place any expectations on my two big girls and their school year and despite one or two hiccups, they have both excelled. They are both turning into book worms just like their parents. This year I have reveled in the opportunity to take my Viking to work with me and watch her blossom in a play based learning environment. I can't wait to spend next year with her again! How many mums are lucky enough to get to go to work AND spend valuable time with their little one? And still do the school run with the older kids? I count my blessings.

We were at time exhausted by the long line of specialists we had to see, some helpful, most were not. However, on the other side of it my Bear and I now feel so much more empowered to make decisions about the health and particularly and their diet. We have found that dairy and gluten free are really making a huge impact on making their lives easier, even if it has been insanely stressful for us at times. The upside to this is that Thor our Thermomix is making life so much easier and we missed out on none of the family food traditions this Christmas just because of our dietary restrictions.  What has truly surprised us is how responsible our girls have been about making food choices on their own. We've had plenty of feedback that when we are not their, they are asking other adults if the food is GF & DF before eating it! Even our Viking who is only 3 years old. How amazing are these girls!

My One Little Word for 2015 will be refinement.

Refining my parenting.
Refining my marriage.
Refining my leadership and management in my career.
Refining my GF & DF cooking skills.
Refining my friendships. 

Now bring on the celebrating!

Friday, 26 December 2014

What love, actually is.


Our Christmas Day has been amazing with the beautiful traditions we are establishing with our family. Stella's eyes were as big as saucers when she saw Santa's footprints and Imogen couldn't believe how many carrots the reindeer ate. Adele was a little trepidacious, concerned that reindeer might still be in the house. Though our day started outrageously early, watching our girls jumping on the trampoline that Grandpa bought and 'Santa' built was all the Christmas joy I needed.

Building a trampoline in the dark like a champion dad!
Watching the sun rise and children jumping!

Every Christmas Gavin and I watch Love Actually. Most years we get to the end before we fall asleep! Each year I am reminded about the different types of love- Colin's lust, Mark's unrequited love, Karen's faithfulness. It is always Sarah's love for her brother that strikes me as the most unconditional, the most tested, the most selfless. Anyone who loves a person with an intellectual impairment, chronic illness or mental health condition will understand how this feels. It is exhausting and trying, and often unrecognised, but it can be the most rewarding love.

It's funny how a movie that came out three years before Imogen even entered our lives, was already teaching me about what love, actually is. 





Merry Christmas everyone!

Wednesday, 17 December 2014

What does your report card report?

I had a blog entry on report cards half written and ready to publish when the Sydney siege happened. I now feel my thoughts are so trivial in comparison. Life is precious. We should stop complaining. We should embrace gratitude. My heart goes out to all those affected by the actions of one person.



What I had wanted to write about was that end of school year ritual - the report card. I'll still post my thoughts as it is meaningful to me, but I respect that you may be reading this with others concerns/anxieties at the forefront of your minds.

Choosing the school we send our girls to was made so much easier when we were told of their reporting system. Rather than the traditional five point A-E scale used by so many schools, our school goes against the grain to not sum up a child's whole year of learning into single letters. No 'grades' are given from Prep through to Year 9. Instead, we get a comprehensive report sometimes 10 pages or more, one that details in the teacher's words how our child has developed through the year in the areas of:
Character Development
Sense of Responsibility
Patience
Self Discipline
Social & Emotional Development
Approach to Learning
Health & Physical Well-being
and of course all the academic subjects

At the last school I worked at I initiated changes to the reporting model so that the level of support a student received would be reflected on the report card. If they were working to a different year level outcome than their class peers that would also be reflected.  I am still so personally and professionally proud of this because I really feel that a 5 point scale that marks against age based criteria doesn't reflect that each child works towards his or her own potential. This is such an important aspect of any special education or learning support/enrichment program.

We chose our daughter's school for many reasons, but we knew straight away that this type of 'report' would tell us so much more about how Imogen is doing at school. It gives us a better idea of her strengths and weaknesses than a single letter on a five point scale can tell. It would be a better marker of Imogen achieving to the best of HER potential. Not a comparison of how she is doing against a set of criteria.

One of the things we have learnt from Imogen is to remove expectations. She will achieve what she will achieve in her own time. She works ridiculously hard to do as well as she does and we are endlessly proud of her efforts. This year it was more difficult than before to read Imogen's end of year report card. This year our middle girl Stella started Prep, so she received her first report card. Though our girls are two very different people with different personalities, interests, likes and dislikes, comparisons are inevitable. Especially when the report card of a younger sibling shows that they are starting to pass their older sibling.

We have known that this would be the case and I don't think we ever put a date on it in our minds of when we thought it would happen. Imogen will sit down and read to Stella and Adele...... and anyone who sits still long enough to listen to her! And I'm so glad that Imogen will always have that, she will always be able to say she helped to teach her sisters to read.

In writing this I think I'm talking myself out of the initial heartache I felt when I first read the report cards.

We have good family friends whose son has just graduated, with honours, from medicine. Our girls adore him and have always been excited about the prospect of his becoming a practicing doctor and were thrilled when he sent them real life scrubs! He has undoubtedly worked hard to achieve what he has - with honours no less! But not for one second do I think that Imogen has not worked as hard as anyone else, just because her report card reads differently to that of her sister's or her class mate's.  Both Stella and Imogen put their very best into whatever it is that they do, though the outcome may be vastly different.


Inspiring our girls to dream big!

Special education, mainstreaming, inclusion - whatever you want to call it - is NOT about the equality of outcome. It IS about he equality of opportunity.


I don't know the origins on the image as there are many versions, but I was blown away by the simplicity of the explanation.


For the time being I am going to enjoy the school holidays and wrap myself up in my three girls. The renovations continue with plans for the new rooms finally coming together. The garden in looking amazing now that summer has brought some rain. Our little town is, as always, the most spectacular and friendly place to live. There is so much to acknowledge and be grateful for in these times of great sadness.


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.








Monday, 29 September 2014

Happy to be wrong!

School holidays are such a fabulous treat, especially when you are a teacher and you get to spend that time with your little chickens! If you follow us on Facebook then you would have seen plenty of pics of all our camping fun. We weren't able to go to our traditional September holiday and aren't likely to be blessed with it again (a beach side unit in a BEAUTIFUL resort for cleaning rates only!), so we accepted the challenge and decided to become campers! We chose a park in a small seaside town thanks to the recommendation of my lovely SIL. An old work colleague has already recommended a great farm stay place for our next trip in a few months time and we are planning already. My Bear is excited about increasing our camping kit after our success so if you have any essentials that you would recommend, let us know! We saw plenty of coffee machines and even a thermomix this time around!

While we are proudly calling this a success, this trip, like so many others, is one that reminds us of the perils of stepping out of our comfort zone. I'm sure every parent worries about bullying, except maybe the parents of the bullies, but when your child stands out as different there is a sick feeling in the pit of your stomach every time someone new interacts with your child. If the best predictor of future experience is past experience, then bullying and ostracising is going to happen again and again. This time some children had just left the playground Imogen was in when my Bear heard them say to another group of children, 'Don't go in there. There's a creepy girl with wierd eyes. They're huge!'

We are home bodies for many reasons, but fear of unknown social situations for Imogen is a big reason. We also avoid going out more than we need to as Imogen's body doesn't handle it too well with a chronic illness dictating her life. It's no way to live. Imogen's illness means she fatigues very easily and become highly emotional or non-communicative from anything which is too taxing. We were very worried that a new experience like camping might be too much for her, and she proved us wrong big time! It was one of those times you are so happy to be told that you're wrong.

Diet and nutrition are becoming an overwhelming focus in our house, causing tears on many an occasion, mostly mine. More about it in the next blog, but thankfully were were able to survive camping under incredible restrictions!


Friday, 19 September 2014

Friendship

Living in Holland you are reminded constantly that you are in Holland, while your friends live in Paris or Rome.

This year I've been getting out and really enjoying time with friends, putting the effort into catching up with old colleagues and booking in playdates for my big girl. Much more than I did last year. Friendships with other mothers is something that has always been a bit of a conundrum at times. It's hard to relate when their experiences of parenting are so different from ours.  Their concerns are not our concerns; their hopes are not our hopes.

I know my parenting path is different and sometimes I do grieve that the bumps and hurdles experienced by others aren’t what we experience. The parents of the other children is Imogen's social circle have their own trials and triumphs.

Triumphs
  • Making it through a whole school week without fatigue interfering
  • Remembering to give Imogen her medication 3 times a day
  • Having her dress or feed herself (ie she's not so tired she needs us to do it for her)
  • Hearing articulate sentences that explain what's going on in her head
Trials
  • Having conversations with teachers about how hard the day was
  • Waiting a year and a day for Imogen to get out of the car
  • Dealing with the stream of tears of the smallest thing
  • Having to say no to tv and movies knowing that she enjoys them so much because they are easy for her to engage with.
Talking to one of my closest friends about parenting joys/terrors as we went for an evening walk she brought up the issue of her trials not being the same as my trials. She thought hers might seem insignificant. What I felt was that there was this world going on that I knew nothing about. I didn't know what 'typical' parenting was. It’s nice to hear what ‘normal’ life is and sometimes I do feel left out because I don’t have a lot of those conversations with other parents.

It’s never insignificant. Never. Just different. I’ve learnt to accept what different is. Our reality is our normal. It’s not less, it’s not more. it just is. Better to feel grief than exclusion I think.

Saturday, 13 September 2014

Belated Father's Day

Fathers Day was last Sunday here in Australia and as my Bear's gift wasn't happening until today I thought I'd hold of on a Fathers Day blog. I'm sure by now you've picked up on our love of gardening (if not, where have you been?). Since this time last year our veggie patch has doubled in size, as has our brood of chickens! Our cottage garden is coming together with a wisteria covered arbour nearly finished as the entry to our house and yard. As a Fathers Day gift this year I organised a consultation with our good friend Clint, a well respected and award winning landscaper. There is only so much advice you can ask out of friendship before you need to make it official! I think it did a world of good to hear that the garden that was built from scratch was spot on for design.
Planning out a dry creek bed for the Australian 
native garden out the back. 

So as these two fine men wondered our vast estate (1/4 acre) and discussed designs, revamps and maintenance I thought it timely to write about a father's role in life of a child with a disability, at least from the perspective of a mother!

Our girls play area will get a wrap around seating for their stage.    We were first introduced to Orpington chickens by Clint.


I remember my Bear being hit hard by the diagnosis the day after Imogen was born, and since then he has worked tirelessly to give her whatever she needed, though at times I know I have been guilty of overlooking his contribution.  In the early days he barely got to see Imogen as his responsibilities at work took so many hours. He'd leave for work before she woke and he'd come home after she went to bed. While I was there doing the intensive physiotherapy for hours each day and running around to specialists and early intervention, Bear was busting a gut to make sure no expense was out of our reach. 18 months of that really took its toll though and we learnt that we needed a more combined focus and effort.

In the beginning there were specific fatherhood dreams that my Bear held and so quickly we had to toss them aside and learn not to expect anything, but to take each day as it comes. Low and behold the daddy daughter trips to the cinema are a reality, as is sharing a love of Astrix and Dr Who and teaching her how to use power tools. There is a very special and unique bond between them, but it is something that takes a lot of time and energy.

There are times when I can see the worry on his face as plain as day and I'm sure many parents feel hobbled and powerless when their child is struggling. I'm sure many fathers feel like the only thing they can contribute is a wage and that was how my Bear felt for a long time. One thing that has really helped us is both of us working part time. When consumed by a full time job we have both been guilty of having little energy left to invest in our family. Now we have a perfect balance happening where as a father he no longer feels disconnected.

We have it sorted with each of us covering different elements and we've become specialists in our fields. I look after classroom adjustments and outside service providers and Bear takes care of allied health (physio, podiatrist etc) and specialists like the pediatrician and endocrinologist. I look after diet and he looks after physical activity. I organise her social life while my Bear does homework. For us the division of labour has worked, but it does require excellent communication to make sure we have everything covered. Good communication itself is something that requires effort and maintenance. 

Considering we started with a bare block we've come a long way. We also started parenting with no knowledge of life with a disability.


Building a beautiful place for use all to retreat to is a project we have been working on for years and we are really starting to see and enjoy the fruits of our labours. I guess that goes not just for our garden, but building our little family. 

Wednesday, 10 September 2014

Expectations

Expectations will knock you down and kick your teeth out.

That's a phrase that gets thrown around our house a lot. In all truth though, the school we send our two big girls to  has taught us so much about expectations. The school is so true to their philosophy of holistic education that each week there's a Parents Program where we learn to be the best parents we can be. Most of the time it is group therapy where we learn that we don't have to be perfect parents and advice is give freely without judgement. It's not often a school commits to supporting their families as well as the children especially when there's a driving philosophy behind the school. One of the BIG things we talk about in Parent Group is the expectations we place on our children, and those we place on ourselves.

If you follow our family on Facebook you would know about our new tv policy.

August 26 :  One of the big childhood hurdles for those with Down syndrome (most intellectual impairments in fact), is initiating and engaging in play. Sometimes it is very hard to know how to entertain yourself.

Imogen LOVES her movies. It's easy for her as she doesn't have to put the thinking effort into maintaining interest in an activity. TV can be a highly motivating reward for less enjoyable tasks some times. Unfortunately for us Miss I has come to rely on TV a little too much- and it's not allowing her to develop much needed skills.

So..... Mean mother that I am, I'm not allowing tv until the end of school term. Instead I will have to work a little smarter to keep her occupied. 


Three weeks later and I think that the whole shift is working well. Our girls are playing well together plus we have a quieter and calmer house. Here's the rub though - engaging in play and knowing how to progress play is very hard for Imogen. Knowing what to say, how to respond and how to communicate her ideas and wants can be a challenge. She is putting all this extra effort into doing what we all take for granted and now her little body is tired. Her brain is using up so much energy that there is little left over at the end of the day. 

To put it into comparison, Imogen isn't tired from marathon training. She isn't exhausted from cross fit. She isn't trying to understand string theory. Her body isn't fatigued from the flu (through the Graves is causing some troubles at the moment). 

The expectations that we place on her - academically, socially, emotionally - need to be viewed in respect to the toll they take on her mind and body. For us that means being very mindful of how her body is coping with the demands placed on her. Are we asking too much some days - or worse yet, are we not challenging her enough because we think she isn't up to it or because it will inconvenience us too much. The expectations surrounding tying shoe laces has been filling our lives lately as our middle girl, Stella, managed to learn within hours of getting her new shoes despite being years younger than Imogen. We didn't want to place the expectation of tying laces on Imogen and then be disappointed if it wasn't for her, or worse, have her feel like she was unable to learn how. Low and behold, she has mastered laces at the age of 8! At one end of the spectrum of milestone acquisition but still peer equivalent!

 Getting the balance of expectations right, or better yet, tossing expectations out the window, is something many teachers I have worked with could spend more time working on. We should never ask children to conform, especially when they were born to stand out. 

 

Tuesday, 26 August 2014

The perils of news and social media.

Wow. Just wow. The last few weeks has really seen news story after news story that has just caused my stomach to churn. I've learnt in the last year or so to not just say what I'm thinking or to make rash judgements about an issue, without mulling it over. After the first news story my mind was racing with commentary and I was ready to put virtual pen to paper. So was every other blogging mother of a child with Down syndrome it seems! Then and even more offensive article was spreading across social media and I was making notes ready to respond with a fiery tongue. No one really responded to that one. Tonight, yet ANOTHER disturbing news story has invaded my life and honestly, I can't sit and mull any longer.

The first story is that of baby Gammy. In short, an Australian couple went to Thailand to engage a surrogate. They were blessed with twins; however, one twin had Down syndrome. It's hard to know what the truth really is, and it's almost always shades of grey, the typical twin came home to Australia, while the other twin stayed with the surrogate mother in Thailand.  There have been many 'revelations' about the story since it first broke and while the abandonment is heartbreaking, that isn't what really upset me.

It was the multitude of statements flooding social media claiming the preciousness of life, that the author of the comments would gladly have Gammy as their own, that every life was valuable. It wasn't just a handful of comments. It was a deluge. Blog comments, Facebook comments, news website comments. Here's the rub, 92% of in utero detections end in termination. I don't believe it's only the 8% that were commenting. Give or take a few percent of families like us who didn't go down the detection path at all, I still can't believe that the 8% are really that vocal. I think a large number people are hypocrites. Well meaning hypocrites. If the abandonment of Gammy was really so important to them, if they REALLY felt that all children with a disability had a right to a quality of life equal to that of their typical counterparts then why aren't they out in their communities, helping out families with a child or adult with a disability? Why don't they practice what they preach? Babysitting, cooking meals, offering respite, volunteering, lobbying? It's easy to feign outrage on social media.

The second story was a delightful vignette from the one and only Richard Dawkins. In short, he said it was immoral to NOT terminate foetuses with Down syndrome as their lives would be filled with suffering, however, children with ASD should be allowed to live as they can be productive members of society. Even his apology was vile. Sweeping generalisations aside, his premise lies in the survival of the fittest theory, which is fundamentally flawed in this case as Down syndrome is a RANDOM CHANCE conception. If he really has a problem he should be calling it immoral to have babies once you turn 35, but I guess that would alienate too large a demographic.

On the flip side creationists would have you believe that all disease and genetic chance is a result of the fall of man from the Garden of Eden. Personally, I'm not from the camp that believes God only gives children with special needs to special parents, or that God only gives you what you can handle (that's another blog entirely). I've seen and experienced the antithesis of both those premises. I don't believe, as Dawkins does, that my child is a terrible burden or shitty luck. I don't believe that my daughter is the embodiment of original sin.

I DO believe that she is Imogen.

The third news story aired tonight regarding pay rates for people with disabilities. A class action suit has been brought to put and end the the LEGALLY SANCTIONED practice of paying less than minimum wage to employees with a disability. Legal discrimination that allows for a person to be paid $80 a week. For those who aren't affected by disability I'm sure you're not too worried, but it underlies the underlying discrimination that is experienced by people with disabilities. This explanation is about sexism but is a good illustration of the issue.  Sometimes I worry that this life has turned me into a big ol' whinger, but then I'm reminded that while some discrimination and marginalisation is subtle and easily misconstrued, other discrimination is outright and needs to be opposed.

The only thing that I can ask you to take from this is to be mindful of the broader context in which families and people with a disability live in. You never know what little thing has been said to, or read by a person, or how heavy their heart might be at a given point. The media, and often people in general, remind us constantly that we are different, that life is sometimes quite needlessly cruel.

Personally, I am grateful, eternally grateful for the incredible support and understanding that we receive from our support network. Family and friends, without knowing it, have reminded me each time one of these news stories hit that we are not alone, that we have strength in numbers. This little town is an incredible place to call home and our little family is strong.

Please join our family at our Facebook page! We're growing bigger every day.


Thursday, 31 July 2014

there is joy BECAUSE of the grey

So much of the year so far has been filled with blessings upon blessings. Our house and yard renovations are coming together nicely and we really feel that we have the family space we'd dreamed of. Work has been a mixture of challenges & achievements and is balanced nicely with family time. Our big girl's schooling has been extremely rewarding with her teacher helping her to reach higher than we once imagined.

So much of this year has been about finding the joy amongst the disability; Regaining some semblance of a 'typical' life. In the most I think we've done really well and our ways of thinking & being have matured to sit more comfortably in this journey with Down syndrome.

Why then, when the Graves comes back with a vengeance does life seem a little greyer? (Just a note that the Graves is hereditary & not due to the DS, but it does compound a lot of the difficulties we experience). In the back of my head is the little voice worrying about the emotional outbursts, the pre-tween spots, waking up at 3 or 4am everyday. That little voice just wishing it were easier.

Things ARE different for us, for her, for children with disabilities, for their families. Today at the shops I spoke to several parents who were keeping their children home for a day because they aren't coping with their disability (ASD, anxiety, intellectual impairment). Tired, emotional, having difficulty with cues - the story is a common one. Parents who aren't able to work because they're on call to their children. Children who put so much more effort into what they do just to achieve the same as 'typical' children. Yesterday I sat in the school car park talking to another mum about the struggles her child is experiencing. If I hadn't been blessed with Miss I and having Down syndrome as part of my life, I wouldn't have been any help to this mum. As it was I was able to empathise because I've been exactly where she is right now. It is because my big girl directed my career to Special Education that I was able to give this mum the information she needs to negotiate with the school administration to get funding to support her child.

In amidst all this grey, the joy found me. I can bring the joy to others BECAUSE of the grey.

This week I received a lovely note:

Hello lovely family, I feel tonight compelled to write you a message about an experience I had today. I have to admit that in my past I was nervous when in the company of people with a disability. Today, Miss E and I were at the pool swimming, and in with us jumped a young teeenage boy with an intellectual impairment. We chatted, he and Miss E played, and we had lots of relaxed laughs. It wasn't until later today I realised how much I had learnt and changed since I met Immy. I understood the boys' mother when she rushed up along side us in the pool (hobbled actually, as she was on crutches) and asked if he was okay playing with us. I understood when she discussed with me that they are trying to teach him the niceties of social interactions - like not being too rough, and asking if it's okay to join in, and trying to be aware that the person on the receiving end of the play was also having fun. I could see in her face the initial concern, and then subsequent delight that her child was just another kid in the pool having fun with a new friend. I also realised that I wasn't projecting onto my daughter any negative concepts about people with a disability - especially when later in our play she asked me "can we go back and play with that boy?". I owe that to Imogen, I owe that to you both and your lovely family. I hope that my words convey how grateful I am to know you all, and how much you have taught me - without me even realising it. xxx

I was in tears when I received this, and reading it again the tears are again flowing. I know that our struggles are not in vain. This silly little blog and my FB page are not for naught. My girl and I have made a difference, we have made a little part of the world a little less grey.




Monday, 21 July 2014

WYSIWYG

I have so many friends who did it the other way around spending their 20s traveling the world and now they are settling down to have families. After filling my 20s with having children and immersing myself in further study I had always put aside my 30s for ME! I am glad that I prepared myself for this inward focus because what I've discovered in just the last 6 months has been life-changing, though I never thought it would also mean looking more closely at others.

What I'm coming to understand, is that anywhere up to half of all Australians will experience mental health issues at some point in the life. Depending where you read the statistics are different but on average:

1 in 6 people experience depression,

and

1 in 4 experience anxiety.

While there are MANY reasons and causes for mental health issues, there is no denying that the discovery of a disability or the diagnosis of a chronic illness is often a trigger point. Any significant trauma, whether in childhood or adulthood, can trigger depression and the trauma experienced by having the rug pulled out from underneath you at the highly emotional time of pregnancy or post birth IS a trauma. The grief which consumes when you think of lost possibilities and the future that will never be, when your expectations for tomorrow are savagely ripped from you, is often a precursor for a down hill journey into poor mental health. If this is in addition to any previous traumas then you have a stew pot of 'at risk' elements.

The mental health issues that arise are JUST AS REAL as the physiological symptoms of disability and chronic illness. (For the record I also want to include learning difficulties that aren't technically in the category of disability, though they can be just as debilitating).  So often people want to dismiss mental health as though it's a choice that people indulge in, rather than thinking of it like any other illness that requires treatment.

In the case of Down syndrome, not only do you have the grief of a diagnosis, but it occurs at a time when the mother is already on a hormonal roller coaster - postnatal depression can easily erode what should be a joyful time. A chronic illness often manifests in symptoms that further feed depression and anxiety and the snowball effect continues. Other people feel their quality of life is somehow less because of a disability or illness.

Something I try to touch on with each blog is the idea that we do have a choice about how we experience the world. Now, as I said before, people don't CHOOSE to have a mental illness, however despite living through a veil of disability or depression, or anxiety, we still have a choice about how we experience the world. We CAN choose how we experience difficulty.

This blog entry is something that has been percolating in my head like a strong brew for some time. Earlier this year I was blessed to attend a presentation on growth mindset by Josie Thomson.   The presentation was a summary of the neuroscience behind a threat mindset (using the primitive part of our brain) and a growth mindset (using our frontal lobe for executive functioning). It was a fantastic seminar and I recommend having a read through her website.

And add to that presentation a few TED talks:

and


The idea that we build our own identity, not so much by our experiences, but how we chose to forge meaning from them, is such a powerful one, and I think a very succinct way to sum up what it is that I'm discovering about myself in my 30s. Are we a victim? Or are we a survivor? I won't ever say my daughter 'suffers from' Down syndrome or Grave's disease, because neither she nor I are victims. We experience Down syndrome and we experience hyperthyroidism.

Stuff happens in life that leads so many down the path of mental illness, and it almost goes hand in hand with disability (for many cultural and contextual reasons I'll save for another blog!). How we choose to think about and speak about our experiences is how we will forge meaning and build our identities.  How we choose to respond as friends, family members and a broader community speaks volumes about OUR choices. Have a think about those numbers - 1 in 6 people experience depression, and 1 in 4 experience anxiety - and now think about your friends and family. At dinner with friends last night included reminiscing about the computers of yesteryear and I was struck by WYSIWYG - What You See Is What You Get.  This is so very true, in many different ways when you think about living with any illness/disability. How you see life is what you will get from it. How you see others dealing with illness/disability is what is going on inside of them. 

I don't know what the future holds, none of us do. My big girl's health may get significantly worse or she may get her thyroid back under control, who knows? She may live independently or we might have to support her for the rest of our lives. Change is inevitable, but unpredictable. It is much easier to cope with though with a growth mindset and not a victim mentality.



Tuesday, 15 July 2014

Winter break


Restful, rejuvenating, relaxing, recharging. This school break was sorely needed, for all of us. Staying at home, sleeping in, getting crafty and snuggling under the blankets indulging in family movie nights.

Holidays are gratefully embraced but we never escape needing to make adjustments. Our middle girl desperately wanted to learn how to ride her bike and as we are blessed enough to live only a few blocks from the centre of town it's an easy ride to the best park in town. Here lies the problem though, our big girl can't ride her bike. You'd think that was just part and parcel of every childhood, but not in our case. Another reminder that our family is different.

For her 6th birthday we bought her a top of the line bicycle. Training wheels were a must have of course. A good friend's son had learnt to ride his bike after intensive OT but that wasn't going to be possible for us. Our hopes were almost instantly dashed as her core strength and balance just weren't built for riding a bike. Being on a larger frame bike meant her centre of gravity is too high & she is terrified.

These holidays, with our middle girl's enthusiasm we weren't going to let the momentum get away from us. There's no way our Miss I can be hauled around in our bike trailer much longer (though it's a great intensive workout!). So, the question was, how do we 'adjust' a simple family bike ride.

We needed a bike that was going to handle towing a growing child (initially an additional 30kg/67lb) so my Bear bought me a 27 gear duchie and I've got to say, it rides like a dream! I haven't had a new bike since I was 10 & my Papa tricked me into thinking my bike had been stolen when he was really trading it in to get me a gorgeous pink BMX!  I get a little thrill every time I think about my new bike -nick named Cloud.  I wanted my big girl to experience that same freedom that comes from riding around the block and into town.

We needed SOMETHING for our big girl to ride. After chatting to the local bike shop owner we ruled out a tandem bike as he said they require excellent communication. That's not our forte! So we bought a half bike! It's going to take some getting used to but at least we have a chance at doing some of those 'typical' family activities.

In one way it's devastating to think that a simple childhood right of passage is a possibility that our girl won't have. On the other, I'm delighted that my girls will grow up with an alternative bicycle experience - just like their mama who learnt to ride a unicycle thanks to her bike purchasing Papa!

She was brimming with pride when she realised she could ride without fear!
It's a bit of a mess to park at the shops but someone always stops us to have a chat about our crazy bike set up!
Our holidays have brought our little family closer than ever as we forge our own identity, albeit with a few 'adjustments'.

My middle girl riding into town for the first time.






PS First day back at school and we're already looking at half days to help our big girl cope. It's not easy to juggle work and to be there 24/7 for a child with a disability.

Wednesday, 2 July 2014

Something simple.... isnt.

I have so many things to be grateful for, and so many things to cause concern. Life is nothing more than a balancing act- this past year has taught me that. All things in moderation. I'm getting back on track slowly with balancing it all and I think a lot of the is down to realising the ebbs and flows of living with disability and chronic illness in your daily vocab.

Over the past month I have had affirmations that have been desperately needed. Apparently I'm a positive, glass half full, silver lining kind of person and I know that I need to be reminded of this. Don't we all need to be holding onto hope & showing gratitude daily? 

Apparently I am a 'go-to' friend, a shoulder to lean on, the deliverer of hot soup. Shouldn't we all be there for each other in times of need?

It wasn't easy making it all the way to winter holidays and in fact in the last week of school we saw no less than 4 specialists with another still to come. On the last night of school we were invited to the 18th birthday party of a close family friend. As they live in a neighbouring town we offered for them to get ready here. Having 9 people getting ready for a party, the disruption to routine, the noise, the general fatigue- it all made it so abundantly clear as to why we have such difficulty doing 'normal' activities. I can't describe the chaos that was our house for 2 hours while we all dolled ourselves up for the evening. Something as simple as going to a party requires an inordinate amount of effort.

Not only was the preparation difficult, but the dinner was as well. How to explain to my big girl that the party was not for her, even though she is still riding on the high of her own 8th birthday a fortnight ago? It breaks my heart to see her tears when I tell her she can't get everyone's attention and sing 'Love is an Open Door'. While she is the most generous and giving person I know, sometimes she just cannot see beyond herself.
https://www.facebook.com/pages/Story-Book-Cakes/255637067809968?fref=ts
The most amazing cake made by a darling friend at Story Book Cakes.
Swapping stories with amazing friends.
My little Viking and my gorgeous middle girl exploring the magic!


If the preparation and dinner were hard, we paid double the following day. Such an exciting event is so emotionally draining that the next day often leads to an inability to be her generous & giving self. If it's been particularly bad there can be almost no communication at all. I learned early in my career as a special education professional that communication IS behaviour and behaviour IS communication. My girl is telling me so much, by not telling me anything.

It's in times like these that I really rely on that innate positivity - my silver lining inner monologue. I become her go-to person, her deliverer of soup for the soul. I could have a big ol' pity party for one about how this isn't fair, how we can't do all the things 'typical' families do. Instead, I work hard everyday to acknowledge the joy she brings to the world, and to my life. It's a choice. I'm tired, fatigued, worn down, resigned, but always filled with joy -  because of her.

The next two weeks of holidays are about sleeping in, chilling out, learning to ride bikes, baking, spending time with friends, breakfasts in bed, building puppet theatres and mud kitchens. I'm looking forward to lavishing attention on my girls & connecting with my Bear.




Monday, 16 June 2014

A beautiful anniversary.

We've had a few beautiful anniversaries to celebrate of late. Today is another. Today I celebrate my 8 years in Holland. It's been a study tour. I came as a tourist & became a foreign student. I've studied earnestly and learnt more than I could imagine.

Those who know my big girl see the world through her eyes- selflessly, naively, without limitations. After my last blog on hugging, Miss I gave a random hug to a mum in the carpark at school pick up. The mum then sent me a text telling me how awful her day had been and how that one act of kindness brightened her day. This is the way she lights up the world, and how she has taught me to be the same.

She has taught me & many others gratitude. Pure gratitude for the simple things in life. When you see how much harder she has to work just to achieve the same as her peers, it demands respect. She has earned that respect and we are all grateful.

I've never been the sort of person to stand by while injustice occurs, but she has truly given me a focus & direction in my life. She introduced me to my calling and I've been able to help so many others because of what she has taught me.

I was having a wonderful theological discussion with a friend last week when she expressed the stereotype of 'children with DS have such happy dispositions'. I was told that so many times just after she was born that I took photos of her crying just to prove that she was the same as every other baby.

That really does sum up what the last 8 years have been -people having expectations & Miss I smashing them. Milestones, growth charts, personality, academic ability - there have always been people who have stereotyped. While Miss I marches to the beat of her own drum and not to a generalisation, I have fought the good fight, for her, always for her, always in her name. Just to give her and others marginalised like her, the same as 'typical' children.

I know a beautiful mother in the US who contributes so much to her community and has brought so much to the lives of children with DS (like her daughter). She too is made to feel like she still has to fight for basic rights for her daughter simply because of the expectations and stereotypes others hold. It is an experience shared by many.

Despite all this, the constant uphill battle, the tears of tiredness, the lack of emotional regulation, the hours of take up time required.... The future is bright & full.  There is no need to worry about tomorrow, it can worry about itself! We can conquer whatever comes before us! I know we'll still be here in a year's time triumphing over our struggles for there will undoubtably be struggles. Life is hard at times, but always joyful.

Happy Birthday my darling big girl! Thank you for everything.

For pics please come join me on Facebook.

Tuesday, 3 June 2014

Hugs and Kisses X0X0

I started this blog as a way of venting. It forced me to articulate what it was that was causing me grief in a way that was socially appropriate. I have been very grateful for it as an outlet. In recent weeks/months I haven't been writing as much and I think the simple reason why is that we have been receiving blessing upon blessing and the anxieties and worries that came into our life thanks to Down syndrome and a chronic illness seem to have abated.

The healthy living course I have been doing over the past four weeks has been very beneficial. Though at times I have sat there and thought 'but I already do this' or 'I already have that thought pattern', I guess that has served to remind me of the joys in my life and that I'm not such a bad egg after all. The greatest lesson I am taking away is about being in the moment. Forget the regrets of the past, restrain from projecting on the future, just 'be' now.

I read an article the other day from a mother who wanted to teach her child with DS boundaries because she was worried about inappropriate hugging when he gets older. I guess I am coming from a completely different parenting  perspective because I encourage all my girls to hug. From a professional standpoint, I have worked with an adolescent boy who hugged as a greeting. He learnt quickly which teachers and students would reciprocate and who wouldn't. I didn't have a problem with him saying hello with and hug....  and I still don't! I'm not his teacher anymore, but seeing him can easily be the highlight of my day as he hugs hello and proceeds to tell me all about his latest cooking adventure.

Here is why I don't have a problem with it. As an adult I can find social situations, particularly greetings, very difficult. Do you handshake? Do I need to hug? I have one friend of my husband who I know is a cheek kisser. In the past I would never initiate the cheek kiss. I guess I simply didn't know how to. Too many awkward cheek kiss misses. Ughhhh. Awkward greetings, I'm not a fan and they can make me feel ill at ease. They leave the whole social encounter feeling awful.  So, back to this cheek kissing friend. I now know that is his greeting style, so I steel myself and preparing mentally. I lean in, offer my cheek, kiss the air near his cheek and.... we're done! Phew! But he's getting married to a friend of mine.... what will be the protocol on their wedding day? Hug? Cheek kiss? In short, the problem is mine, not his.

Now, someone please tell me why my daughter hugging people is wrong, and why she needs to learn 'boundaries' when this man who wantonly kisses the cheek of all he passes is deemed socially acceptable? In reality, we could all use more hugs, couldn't we? Shouldn't we the receivers change our perceived boundaries?

So, back to being in the moment.

I think that worrying about whether or not my 8 year old's hugging will or will not be the cause of boundaries to be crossed in the future is wasted energy. I think that the mother in the above article who saw the actions of another child and projected them onto her own son is missing the 'now'. Surely if my parenting now is the best it can be, my daughter, DS or not, will be the best she can be, now and in the future.  If I can teach her to find self affirmation, then she won't need to seek it from others. Isn't that a better plan than teaching her not to hug people she meets?



A very dear friend of mine has a blog far superior to my own (plus her photography page). She started her journey of motherhood a couple of years before me and she has taught me more than she could realise. Just today she posted about the fear she goes to bed with every night because of her daughter's T1 diabetes. It really put any worries I currently have for my daughter into perspective and maybe the mother in the above article needs a little of that perspective too. I am grateful for the ease and joy which has descended onto our little family this year.

Worrying about what may or may not be in the future needs to be proportionate to the significance of the thing you are worrying about AND your ability to influence it. My friend has every reason to worry each night. Worrying about how a hug may or may not be reciprocated by someone 10 years from now...

Tuesday, 13 May 2014

Mother's Day 2014

You know those days that are so good you declare that it will be a hard task to ever better them? Well, that was my Mothers' Day last Sunday. It was a most brilliant end to a rather busy and stressful week.

In the lead up to Mothers' Day I was thinking about what I would blog. Initially the phrase 'bitter sweet' came to mind. This certainly isn't the motherhood I thought it would be. My life is nothing at all like I thought it would be 10 years ago when I was a newly-wed, and it's not like I thought it would be 2 years later as I prepared to bring my big girl into the world. Even though I was a month and a half off my due date my darling Bear still bought me a Mothers' Day gift that year!  16 hours after giving birth to Imogen everything I thought about becoming a mother was tossed out the window. My expectations, my hopes and aspirations for my first born were obliterated with 9 little words ' I think we need to consider Down syndrome'.

That could be perceived as the bitter element of my journey through motherhood. I try my best to not think through that lens. I believe that my big girl was brought into my life to make me a better person, to introduce me to a world that I never knew existed and to teach me about what really makes life sweet.

On Friday, at the height of my awful crazy week, my Bear sent me a text.


There was no way I could say no! Tony Robinson has been in my lounge room since I was a small child! Fat Tulip's Garden, Maid Marian and her Merry Men, Black Adder, Time Team and countless documentaries!  Despite now adding a day long trip to the neighbouring town to the end of our rather hectic week we decided there was no way we could not go. We figured we would need a telescopic lens to even catch a glimpse but you've got to be in it to win it.

Not only did we get to see Sir Tony up close and be in the front row for the filming of his latest tv series, we saw some magical moments between him and out big girl. The first moment was in between filming when my big girl called out
'Hi Fat Tulip!'

Tony Robinson turned to her to say, 'How do you know about that? You must be a very young looking 40 year old!'

To which my girl proudly responds 'No, I'm 7!'.


After the filming we went back in the afternoon to have a book and audiobook autographed. We duly waited in line and when it was our turn, I swear Tony recognised Imogen. We had our photo taken with him and as I was checking the photos and squealing with school girl delight, I turned around, looking for my big girl only to find her having her arm signed! Now that's one incredible Show & Share!



Monday at work I was totally having Tony withdrawls!

Now while this chance meeting of a childhood hero will make it really hard for my Bear to top next year, meeting Sir Tony wasn't the best part of the day.

Laying in bed first thing in the morning being showered in gifts, my middle girl gives me a card she has made at school. It contains cut outs of the 5 people in her family, plus her imaginary brother (maybe we need to have baby number 4 after all!). The message is written by her teacher but no less touching for it.  I move on to open the next present and stop half way. I turn to my big girl who is now reading the card her sister has made. A completely unfamiliar text, with phonologically irregular words. She reads it perfectly. Defying and surpassing all expectations, hopes and aspirations others may place on her.

Now that is what makes 2014 a Mothers' Day to remember!

Sunday, 4 May 2014

Constructing, one brick at a time.

I'm not the only person to blog to be cross at themselves for not writing often enough, but with holidays, work-related management, garden renovations and spending time just 'being' with my perfect little family, there hasn't been time or desire to write! I'm going to try and change my pattern a bit and write while I sit beside my big girl and my little Viking's bunks while they drift to sleep. I love listening to the different rise and fall of their breathing and the inevitable snore from my big girl!


There have been so many moments of late where I have thought 'that would make a great blog entry' but before I get to write it down, another idea comes along. Unfortunately between the ideas I haven't had time or inclination to write! One that did strike me quite profoundly that has stayed me me in one form or another is the idea of constructing childhood. It started like this: we were visiting good family friends in the neighbouring town for a blissful six-hour lunch. It was one of those afternoons that could have gone on forever. On arrival our friends had planned an Easter egg hunt for the girls and they spent the rest of the day playing with the animals, domestic and farm. There was a look of pure joy in their faces and it was then that it dawned on me. They were creating memories, memories of visiting friends and sharing a meal and playing in a beautiful garden in the middle of nowhere. This memory was a direct result of a choice I had made - being that I had said yes to the invitation to lunch.

I remember the gatherings I attended as a child dragged around by my parents. My memories are a result of their choices and here I was doing the same to my girls. The idea of constructing their childhood struck me hard. Some things we actively work on, like diet and exercise, trying to construct a childhood we think will put them in good stead for life. For us, it is extremely important that they develop a good relationship with food and the idea of exercising daily is completely normal for them. We actively chose their school because of the philosophy of non-competition and character development. We choose to live in the country to offer them a simpler way of life. We choose to have them involved in all the work we do around the house and yard.


Helping their dad to renovate!

There are however, so many things that we don't get to choose and can't control. I'm working hard to try and learn to not let those things (and people) I can't control impact on my anxiety levels and general well being. Things like: what other children say to my big girl, whether or not anyone plays with her during the lunch break, what her teachers say when they are frustrated with her.  And it's not just my big girl whose childhood is constructed by others. Those times we've been at the park and my middle girl has had to stand up and tell other children to stop being mean to her sister will not only form the construct of her childhood, but also her idea of what disability means. All of these things will combine together to construct her childhood, to create the memories that will stay with her for a lifetime. The power and the influence that others have in her life without even realising it is rather daunting really. It really brings home why I need to be her voice and her advocate. Do I let the world construct her understanding of herself? Do I let the world tell my middle girl and little Viking what their sister is worth? Hell no!

Today I was blessed to start a healthy living program with a local 'wellness' center. Over the next six weeks the other participants and I are going to learn about diet, exercise and mental fitness. Like most workshops I attend, I sat there thinking, 'but I know this already', though I am thrilled at the opportunity to be challenged to really incorporate the knowledge into practice. Here's hoping I can really use the next six weeks to reflect on the way I construct the childhood and personality of each of my girls.

https://beckyhiggins.com/products/


Saturday, 19 April 2014

Do more of what makes you happy....

Do more of what makes you happy.......

How many times have I seen this inspirational quote pop up in social media lately? Well, enough for it to stick in my brain, swish around like mouth wash and form itself into a blog entry.

I whole heatedly believe in this motto. Who wants to do more of what makes you sad, angry or uncomfortable? Almost no one would volunteer for that and it isn't healthy to wallow in self pitty/denial and

Work makes me happy. I'm thrilled to be throwing myself behind leading my little early education center and we have such big things plan for the next 9 months. Lots of funding applications to completely revamp our outdoor play area keeps me motivated as does the wonderful staff I have working for me. I am excited by all the possibilities in front of me.

Gardening makes me happy. To see the massive landscaping changes we've made since an injection of funds last December brings happiness daily - the tiered veggie patch, the terraced lawn, the floating wooden bridge, the new driveway, the imminent new front fence and arbour. I come home from work and go straight to our garden for that calming effect.

My family makes me happy. This is a given. I adore my girls and my Bear as much as the next wife does her family. I love seeing my little Viking asserting herself and learning something new each day. I love hearing my middle girl piecing together her letters and making words, always asking how to spell this or that. I love watching my big girl reading; I mean reading everything she can! We can't even pause at a set of lights without her reading the shop names!

So... to do more of what makes a person happy..... 

I was blessed today to spend hours upon hours just sitting with amazing friends, eating, drinking and chatting. Peppered throughout that happiness were moments remembering (and explaining) that our path is a little different to most. 

The idea of being a regular, non-marginalised family makes me happy. However, when I drop my big girl off to Girl Guides I am reminded of how patient the other girls are with her. Why does this thought even have to cross my mind?  Why do I need to be reminded that we are 'different' when I pick my big girl up from school at the end of the school day because her teacher tells me of how tired she is?  Daily I am reminded of how my big girl struggles most of the time to initiate play even with her sisters.

My darling big girl has many interests in life. Singing and dancing is a particular freedom that I've taught her to embrace. It is what makes her happy and we even recycled some wooden pallets to make a stage for her and her sisters in our yard. Even so, I couldn't count the number of times she has tried to sing a song she is learning, or tried a new dance move, only to have her brain and her body fail her - to not do what she wanted them to do. How do I help her overcome the frustration that is inherent in doing what makes her happy? How do you overcome the fact that you can't do more of what makes you happy because of the thing that makes you sad?

It's hard to do more of what makes you happy, when what makes you happy also inadvertently reminds you of the grief and pain that exists in your life. It takes a lot of work to overcome that background noise, to rise above it and be just in that moment of happiness.

I wonder how many other families out there touched by disability would like to do more of what makes them happy but cant due to lack of support or resources. Or more importantly, need to do more of what makes them happy, for their own mental well being and overall health.

I wanted to share this clip again. Like so many other 'happy things to do' it is a bitter sweet mix of happy with the reminder of that background noise.  I've already shared in on my Facebook page but watching it again is certainly on the list of doing more of what makes me happy.



Come and like my Facebook page where those touched by disability can work together to navigate this path through life together.


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.

But.....

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.