Little steps

Cerebral Palsy Awareness day has been and gone again. I wonder if the world is any different. Is every building accessible? Can any adult with CP access meaningful activities/employment? Is positive language being used (I’m looking at you “R” word!)? Have folk stopped staring?

I cannot answer yes to any of these questions (yet). They are all aims to keep striving for but are they a measure of lack of achievement? I think not. I reckon progress can be gauged in smaller increments.

My getting-bigger-by-the-minute girl has two applications pending for some kick a**e technology. One to cruise independently (and add to my grey hair!) in a powered wheelchair. The other will enable her to use her eyes to talk (I know right…amazing)! If there is such a thing as a time to have cerebral palsy, now is it. Amazing technological advances are becoming cheaper and allowing for new levels of involvement and independence right across the disability sector.

Positive role models are more prevalent then ever too. Skilled athletes gave their all at the recent Paralympics shining a light on the “ability” in disability. Kids of all abilities are regularly popping up in chain store advertising. Social media platforms allow many more voices to be heard. My kid doesn’t have to look far to see people like her living life well.

There’s lots of good stuff going on for people with CP (in amongst the crazy everyday juggle) that I can recognise when I pause and reflect.  It may be pertinent to remember that people with cerebral palsy and other disabilities were routinely institutionalised until only 20-30 years ago.   That is a big shift in attitude in my lifetime.  The world is not perfect for my girl and the extra challenges she has but it is perfect-er.

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I because Cerebral Palsy

On Sunday missy and I met a curious little dude at the market. His mum gently suggested he say hi. He was quite shy so my girl used her communication book to ask his name and tell him hers. He asked his mum why she’s in a wheelchair. The lovely mum began to explain but she wanted to use her book again. It was the first time I have ever seen her explain her own diagnosis….my voice may have wavered as I said the words on her behalf…”I because cerebral palsy.” The mum (who I now have a mummy crush on) took the opportunity to relate missy’s words to the para-olympics they had been watching at home. Meanwhile his baby brother and my baby-adoring girl made eyes and had a little chat.

 I had seen the little man looking and took a sharp breath in expecting past experiences….but his mum turned it around naturally and gently. She made it ok for him to ask questions and answered them all. She encouraged him to interact and check out missy’s communication book but didn’t insist. Parents often look awkward when their kids stare and I get that. It is not always easy to know what to do and is a rare thing for a parent to ace it like this lovely mum did. A simple smile would have sufficed but this chat was so much more.

It reminded me of another occasion. A time when a child looked at and spoke about mine. It was so very different. I was shocked by what came From his mouth . There have been numerous occasions in between. Pointing. Staring. Swivel-on-the-spot-mouth-gaping. And a gorgeous girl who simply wanted to tell missy they had the same dolly. On Sunday we met a mum who made it normal for her son to be curious. And my girl….she shone. She took the opportunity to speak for herself, about herself.  At what the girl calls “country market” we were reminded that there are good people out there…really good ones. And for that we are grateful.

We are here!

CP Awareness Day has rolled around again…dodgy pun intended. The campaign this year has centred around staking your place on a map. To virtually shout loud and proud…” I /someone I care about has CP and this is my/our story”. I meant to join in…I really did. But life has been extra busy here. And I guess that is the point.

To our family Missy is many things before she is a diagnosis. She is a smart kid, an adoring sister, a loving daughter, a caring friend. She is patient and clever and forgiving and funny and…did I mention patient? She has been sick. For many weeks now. Cerebral palsy may not define her but it does have an effect on many aspects of her life. Her health is one of them. So, this year, this day finds us on the upswing of a very trying time with very little energy to wax lyrical about her story, what CP means to us or the changes we would like to see.

Suffice to say…I love this kid. She has extraordinary strength and teaches me about my own every day. What does World CP Awareness Day mean to you?

The Word

My stomach is clenched trying to decide whether to rock the boat. I am not one for confrontation…I’m actually quite skilled at avoiding it. But I have to say something. I have to point out the faux pas even though I know it wasn’t intended. It was staring at me so hard that I couldn’t scroll past. This has happened a few times now. There are people who make a linguistic faux pas. The “oops, I’m sorry” (and genuinely so). No excuses made just owning a mistake. We all do booboos of some sort. I see this as an opportunity to communicate and educate. Which is much the same with those who really don’t realise their offence (fewer, and younger, but they are out there). A chance to inform is good…if not occasionally tiring.

The term mental retardation was diagnostic, or at least medically descriptive, many moons ago. So the term originates medically. Unfortunately using it as an insult originated humanly…and I definitely don’t mean humanely. It has seemingly become ingrained in our Aussie lingo. When spat at someone it is meant to be derogatory…that is the purpose when said like that and I fail to see why people deny it. For those that utter the classic “I didn’t mean it like that“…huh? You DO mean it like that…that’s exactly what you mean. Maybe they protest because they didn’t intend to insult my child (fair enough mistake to make?) or didn’t intend to say it in front of me (a worrying combination of knowing it’s an insult but aware enough to not want to cop flack for it).

My son’s first year at school involved a lesson with a relief teacher.  The kids were whispering to each other, as they do, when he said “I can hear you ya know. What do you think I am a retard?” Amid raucous class laughter my poor boy sat, shattered. He knew how insulting this was to his sister but wasn’t confident enough to say anything.{I did though!}  The teacher was a  youngish bloke but an educated one who should know better. It is all too common. On television {Shaun Micalef is a recent offender as are his writers and anyone else who saw the script and didn’t protest}, in sport {the urban dictionary actually relates the diminutive “tard” to players, staff and fans of the Melbourne Victory soccer team…I have no words.}

It comes down to this. Calling someone a f%$^ng retard is never a compliment. Using it as an insult implies the folk in our community who don’t speak or are in a wheelchair or who dribble or who think differently or slower than most…are less. And that is simply not true.  So using the “r” word has to stop.

Friday be good

It is strange how the mind works. I had forgotten. It happens every Good Friday but I forgot how much the appeal gets to me. How it creates many an emotional response.  Here in Melbourne The Good Friday Appeal raises a huge amount of funds for the Royal Children’s Hospital…our hospital. So far today I have shed sobbing tears and yelled at the television (well not quite yelled but I was assertive and the TV knew it was being ticked off!).

There are the memories. My whole rollercoaster ride with the hospital system and disability sector began at this time 11 years ago.  And the very first time Missy had a seizure long enough to need an ambulance ride was a couple of days before Easter. We were booked to go to the huge egg hunt at Werribee Mansion on that Good Friday but she was still on a ward at RCH juggling medication levels. It certainly was interesting seeing the Appeal from the hospital side…eggs for the kids, celebrities in the lift, much activity and hilarity…but we, and most other inpatients, would rather have been home.

Of course as well as bringing in money to pay for new equipment and programs and research the Appeal itself raises awareness. Many families, like ours, have the opportunity to tell their story. Yet I still feel the need to loudly tell the presenter (through my television) that yes I do know exactly what it’s like to have a child who cant even eat. I live it every day (I explain). Silly really and easy to forget that most people at home watching actually don’t know what its like to  have to put food down a tube for their child. I feel a strange mixture of things today. I am overcome at the amount of people helping, proud of our hospital and, oddly, annoyed that most people (read celebrity-donation-readers) only live this for a day. But the little faces and the stories told by their parents and medical staff warm my heart. There are many tales of sadness and hardship…and so many more of hope and healing.

Many of the stories make me smile…either with joy or empathy. But the tears began with a text. A photo of Missys friend  and her stall at her holiday caravan. She wanted to raise money for the appeal because the hospital looks after our girl….then decided to help her friend more directly with our frequent hospital visit expenses. So she and her gorgeous heart are proudly selling loom band treasures she made herself. Extraordinary. A child hovering around double digits brought me undone. So I sobbed out the memories and the sad stories and the overwhelming generosity of our little friend…and then smiled. For we are lucky to have this hospital and the expertise provided. We are fortunate that people are generous with their time and money today. And we are certainly blessed to know this loom banding angel. It is a good Friday.

Awareness with a capital “Eh”?

Apparently it is Cerebral Palsy Awareness Week in Australia. It may not be working. If I, as someone in the biz, only heard of it via one organisation’s Facebook post I think the general public may be blissfully UNaware. What is hoped for in such a week?

Well, we can regale folks with  statistics. Or at least try to. Navigation of the ABS site and several CP support organisations reveal that a child is born every 15 hours with cerebral palsy, or it may be 18. Somewhere between 20 and 34 thousand Australians have CP. That’s one in 4000 children…or is it 2 in every 1000? One site actually touted both the last statistic and that 1 in every 400 babies will have or develop CP but what’s plus or minus 100 babies between friends. Lies, damned lies and statistics. What I know for sure is that stats can be manipulated and (breaking the mathematician’s code) tell us not much except that CP is the most common childhood disability. But what does that mean? There are a lot of people afflicted (ewww…shudder) or shall I say dealing with the ups and downs of CP through a huge variation of issues and severity.

Shall we try the medical approach? Cerebral (of the brain) Palsy (muscle weakness or paralysis)  is an umbrella term for a developmental disability which affects the brains ability to control muscles due to an injury to the brain usually before, during or shortly after birth in a non-progressive but permanent way resulting in impairments in functional mobility and associated issues. (I hope you didn’t hold your breath through that sentence!) Medical-ese gives words that basically mean one side of the body  or both sides can be affected… one limb, two limbs or all limbs. There may, or may not, be issues with cognitive ability, speech and communication, eating, mobility, toileting, grasp and associated medical issues. Basically stuff is harder and some extra support and equipment is needed. Not to make light of the difficulties. At times the heartbreak is raw and palpable. But…and it’s a big but…the joys are immense.

And so to awareness, statistics and medical jargon aside. Unfortunately anyone wishing to become more informed about CP via Google would first see a medical negligence lawyers ad. It is a traumatic and necessary step for some families but it saddens me that this may be uppermost in peoples’ thoughts. I hope this week achieves one thing. People are people. Cerebral Palsy is not an adjective. So “that cerebral palsied child” is not a term that I favour. I have a kid with cerebral palsy. Kid first. Simple. Seeing people first. That’s what I wish for. Seeing a cheeky grin, an understanding glance, a funky hair do, a quick wit, a compassionate soul. That’s awareness we can all be proud of.