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

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.