My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.

Tuesday, July 31, 2012

the bliss of a break

I've just returned from 4 nights away visiting my old city, my old friends and my old life. It was bliss! Honestly respite is the one thing that keeps my sanity intact. I spent my time truly grateful for my life and family back at home but truly grateful for the break to make me feel that way. I got to go out to tasty restaurants that couldn't fit a wheelchair, eat gorgeous food that would make Eva break out in a rash, wear my lovely clothes without getting spit or food on them and sleep in as much as I liked. I know I'm lucky to get a break and I know of many people that can't or don't for financial or medical reasons. But it cost very little to come home feeling totally refreshed and ready for another 6-12 months before that can happen again. 
I found myself engaged in lots of conversations about Eva and one of them was a friend wanting me to tell her about my daily life in a blow-by-blow account. I realised as she kept asking more questions how different my life is and how used to that I've become. It's no wonder that the public generally knows very little about what it's like to be the parent of a disabled child - it's almost too long and involved to talk about so its easier to gloss over the everyday realities that in all their small ways make life sometimes so unbearably different, so heart-breaking and sometimes so downright boring. I'll get to it in a blog one day but in the meantime I just want to bask in the glow of my time away...
before I have to tell you about what happened after I got home when I managed to spoil all my calm with mild outrage.
That can wait til tomorrow.

Sunday, July 22, 2012

Who has her back

I've been meaning to post about this for a while.. When I was at the Spectronics conference a couple of months ago something really unusual happened..  I was in a lecture that was about "moving beyond requesting" which I was hoping would help me learn how to do more with Eva than just have her respond with yes and no.  The speaker got us to raise our hands to show whether we were therapists or teachers or parents and the room was overwhelmingly filled with speech therapists followed by teachers and very few parents (maybe 6 of us?). She showed a couple of slides about a boy who was having trouble using a communication device and was starting to look angry because he wasn't being heard; the device wasn't able to do what he needed it to. She asked the crowd "what do you think happens now?"...
As I muttered "he feels frustrated" almost every person around me called out "bad behaviour" or "act out". The speaker agreed with them. I just couldn't believe my ears. All that these therapists could see was that bad behaviour would be the outcome - a totally subjective viewpoint and one that was the total opposite of what I as a parent felt. All I could see was how frustrated and annoyed that boy would have been and if bad behaviour was the outcome of such frustration then surely you would address his frustration first and foremost. It was such a strange moment and one that continues to confound me. If the very therapists who are meant to help children communicate cannot understand them then what hope do the children have of ever truly being heard?

Tuesday, July 17, 2012

The curious art of comparing

It seems to just be a part of everyday life that parents compare their children to others.. check on their status both physically and metaphorically. In fact I remember it starting from conception - (smug smile)"oh you're not showing much for 20 weeks" or (concerned frown)"she hasn't babbled yet?" And so it continues. I got asked to "walk a day in my shoes" by a father who has four children with varying degrees of disability. The preface to his comment was a conversation (that he wasn't a part of) telling my friend how I wish I could just walk into my house and hey presto all the speech therapy symbols and boards would just be there - ready-made and ready to go. He told me I wanted life served on a silver platter to which I replied "well, why not?" and he responded with that comment. I was gobsmacked. Walking a mile in his shoes was something I didn't feel I needed to do. Was he a better disabled-parent than I? Was I due for some nasty lessons life hadn't yet taught me? I had naively thought there was an unspoken rule in disability - we're all in this together no matter what level so be gentle, kind and forgiving. I guess somewhere along the way I made that up and believed it.
I got to see this weird kind of one-upmanship again today at the public hospital where we attended an appointment with Eva's paediatrician. It is a busy hospital with clinics that range from fractures (pretty normal and simple) to cranial clinics where the cases can be anything from mild to severe and the children in various states of health/surgery/distress and clinics for syndromes like Rett, Angelman, Down etc. It was the perfect place to observe this intriguing phenomena of keeping-up-with-the-Joneses in an other-worldly Joneses-who-have kids-with-severe-disabilities kind of way.
As I walked into the lift a mother and her two children got in after me and I saw her quietly check Eva out. Eva was snotty, itchy and irritated and making all kinds of noises that a four year old does not make. Her hands were being chewed on with barely a seconds respite. The mother looked at Eva then at her own children. I saw her chest rise and fall as though she were inwardly sighing with relief. A Dad smiled grimly as he carried his big boy with a thick bandage around his head. His eyes were sad and my smile didn't get to him before he'd looked away. All the way down the hall and continuing into the waiting area parents sized each other's children up making internal comparisons. Looking grateful, looking alarmed, looking away. I'm not immune to this either. I have seen children with severe illnesses or disability that have made me almost thankful that Rett syndrome is all I've had to deal with.
It's as unusual a reason to feel proud as it is to feel grateful.

Tuesday, July 10, 2012

A trialling afternoon

After months of waiting, forms filled in with Eva's measurements - chest, legs, knees, armpits, you name it we measured it - and more waiting, we finally had a house filled with equipment to trial yesterday afternoon. Eight pieces, totalling around $70,000 sat side by side in a crazy mess of black metal, plastic, levers and wheels. We had Eva's physiotherapist in attendance as well as her occupational therapist, Eva's dad, me and the two reps from the equipment provider. And of course little Eva who yawned and giggled her way through being carted from one piece to another as we tested them all out. 

This was meant to be the chance to choose a chair for school next year and a walker for Eva to be more independent at home. But it was not. Big sigh. How frequently I find myself frustrated with the disability sector... The company had brought almost every single piece of equipment in the wrong size! And after spending time dutifully filling out all their forms with Eva's measurements I was immeasurably annoyed.
Standing Eva in the walker we had really wanted to buy, her legs were so long that her knees had to bend to fit in making it too much work for her to stand up and walk. There is a fine line with walkers - they need to be supportive enough to help hold your hips/torso to allow you to walk but not too supportive that you slump down in them. We couldn't tell if this model would be the right one because they didn't have the right size for her height!

It wasn't just the time we spent (2 hours) and the time of Eva's physio and OT we wasted but it strikes me as incredibly rude to get us to look at something in the wrong size then expect us to spend $4000 - $7000 on it. I lay in bed last night wondering if I knew of anyone who has bought say a wedding dress after trying on a sample size that was too small for them or buy a $4000 pair of shoes that they hadn't tried on. Nope, can't think of anyone.
Spending months waiting for something that will definitely help Eva get stronger and finally be independent only to be foiled by incompetence leaves me keenly aware that no-one cares as much as I do about getting Eva what she needs. I find it very hard to be assertive to people who are meant to be doing a good job: Doctors, providers, therapists etc. I expect that they will be respectful and if they are not I find it hard to call them on it. I absolutely have to learn to become more assertive. Call it what you will - squeaky wheel, helicopter mum, fierce, brave, mad... Whatever it takes, I have to stop being nice to people who don't treat my daughter, my family, my time and money as important.

Sunday, July 8, 2012

A Pain in the ...

Earlier this year I slipped down our front stairs while carrying Eva. I was only two stairs from the bottom but on the wet stairs my feet slipped suddenly and I was thrown backwards. The weight of Eva on top of me fractured my ribs. My brain, in that split second of falling, chose it's biological imperative: hold tight to my child and protect her from the fall. It was amazing to think my brain could react so swiftly, even before I'd really thought about it. I spent a few days in agony and four weeks in pain, resting as much as I could but even then I was still lifting and carrying Eva, taking painkillers and gritting my teeth. We have of course now expedited our decision to move house to a place with few or no stairs! Down the track we will also have to get a hoist to lift Eva into her bed and the bath to prevent our backs from taking constant strain. Either that or she has to learn to walk on her own. Hmmm not sure how much say I get in that one but she (and we) are trying!
It is the constancy of lifting and moving that is the real long-term worry for me, for all of us. Every day we carry Eva from her bed to her chair, then her chair to the toilet, toilet to bedroom, down our stairs into the car, back up stairs, into the bath and so on. I do a lot of other lifting and holding - dancing to music together or showing her something up high or just because it seems easier and faster than pulling out her 20kg pram and putting it together for a quick run into the shops. But the daily strain has meant we've spent more on physio and massage in the last year than ever before. I've been reading on the Rett forum about parents of older girls with Rett syndrome who have quite literally broken their backs caring for their daughter. They have had multiple surgeries, sometimes getting rods to hold their spines in place. It's a frightening reality if I don't take their advice and use respite and help as much as possible along with keeping fit, resting and recuperating. Eva's dad has had a shoulder injury for three months preventing him from doing much of the lifting. He's been doing physio excercises to get back up and running as quickly as possible but it is a matter of giving the body time to recover. I am already feeling what a pain it is if one of us "goes down" for any length of time. It's exhausting!

And so to resolve this we have now started a home program of weight training. Devised by Eva's dad to help him recover and for me to get stronger we hope it will keep us fit and strong enough to keep doing this for many years ahead.

Thursday, July 5, 2012

Winter holidays

It's winter holidays here in Australia which means warm sunny days of about 20 degrees celsius and cold dark nights with the sun down at 5pm and the chill factor being about 5 degrees celsius where I live. It's not bad as far as a winter goes! It's been fantastic having a break from driving and attending kindy twice a week plus running around to all the other appointments we squeeze in on our free days. It has showed me very clearly how managed and restricted our days usually are. It seems that life has become a long list of things to do with Eva having Rett syndrome: conductive kindy, physio, speech therapy and numerous doctor visits. But our list over the holidays has been wonderfully different and easy. We've been to see a movie, made some bookmarks, made a crown out of flowers and dried leaves, seen some African drumming, been to story-telling and walked around the modern art gallery, all of which were Eva's choices. 
I'm not a natural at organisation and routine and I find getting to appointments on time difficult most days. It's lucky that Eva is relishing the lack of routine as much as me and has been sleeping in, eating better and vocalising lots about all the fun things we are doing. We've started reading an Enid Blyton book while we laze around in the late afternoon sun but it will soon be over and the mayhem of daily organisation will begin. I will long for the cool winter days when the heat of summer kicks in. It's just like being a kid all over again.