Let’s chat

Communication is something I think many of us take for granted. I know I did…pre my-teacher-Miss K. Happy childish banter; debriefing with friends; explaining symptom to a doctor; ordering a coffee; sharing a joke; revealing your innermost thoughts to a loved one; smashing a job interview. All of these and much more  is essential to a fulfilling life. People with little or no speech have to find different ways of expressing all of this. And they do!

I had the privilege of attending the AGOSCI conference in Melbourne over the weekend and it has left me full of excitement for my non-verbal child. I thought I was up with the AAC club but there is so much more of a rich and vibrant world of AAC out there than I realised. Technology has come a long way…and so have expectations of people who speak differently. Our Miss K is a multi-modal communicator. She uses a couple of key word signs, body language and facial expressions, her voice and intonation, a PODD book and her voice output eye gaze device. So, really, we are all multi-modal chatters…phone, text, insta, Facebook. 😉 And even these can be accessed on many speech devices.

PODD is missy’s favoured way to make her point. She has a good range of language to use in her most practised format. But it is the eye gaze device which points to a great future. I have noticed that when we are out in the community people look at her out of curiosity rather than the usual rude staring if she has her device. You see it’s essentially a tablet so she looks more like your average teenager than a kid with special equipment. And it takes very little expertise to set up. The independence she craves is coming…then I’ll have something else to worry about!

Being immersed in AAC for a couple of days normalised our world. I heard speech therapists present exciting new research, teachers passionate about the voice of their students, parents learning with and advocating for their children…and I heard AAC users themselves. I am not going to use the “I” word because these were simply people living their lives and telling their stories. These were people who had heard the same “can’t” won’t” and “will never” that we heard about our girl…but they didn’t listen. They found the courage, support and the voice they needed to rewrite the medically expected story and make their own. I listened to the wit and humour of a woman who works in the legal profession and could see my girl being the writer she’d like to be. I heard about the crazy antics of an young man who skis and dives and rides bikes in the bush and saw a kindred adventurous spirit to our kid.  And I got teary watching Missys friend present her work on her favourite invention…the PODD book….because it gave her a voice. Augmentative and Alternative Communication may be an unfamiliar term to many but to our family it is a way to see our girl…her humour and dreams, her wit and kookiness…and it’s her golden ticket to the world.

Green as…

The topic I am currently workshopping in my head is…”How to not be resentful during a long weekend when everyone else seems to be having more fun”. So far I have…nothing. The title is simply on a loop.

I thought I’d be fine. “We’ll do some fun things…it will be like a holiday at home.”  I’m not so convinced today. Tomorrow we do have plans so there is hope…but today is blah. It was a tough week here so today really needed to be low stress. Nup. The girl is on try-hoisting-me-if-you-like-but-I-will-kick-all-the-way fire. Her brother helper hurt his wrist yesterday so can’t help to lift her. And the oldie is away for what feels like ages. So it’s just me.

This kid is so many good things but man she can be hard work!  My shining light? I do know {{somewhere in the recesses of my mind}} that I am lucky. And that Speechless is on again tonight! Watching a family like ours on TV is good therapy. And here’s where you come in dear friends…hit me with your solutions. How do you care for your family and keep it light and fun when you feel you are constantly missing out? The workshop is still in progress.

Zinging

You should make something. You should bring something into the world that wasn’t in the world before. It doesn’t matter what it is. It doesn’t matter if it’s a table or a film or gardening-everyone should create. You should do something, then sit back and say, ‘I did that.’ ” Ricky Gervais

This quote sang to me… Fat Mum Slim has a way of choosing and writing words that resonate. Often her posts encompass the joy and challenges of parenthood in a way that make me yell “what she said” at my screen. She may not be in the “special needs” club but I still feel she gets it. Whether you have a child who has a diagnosis or is painfully shy or has allergies or is a red head {{yes I can say it…I love a red headed monkey}} parenting can be a tough gig. Yes, I am a parent by choice. I am a carer because…life.

I think of the “caring” part of my role as a job. A full-time-unrelenting-but-rewarding job. There is always something to do. But that’s the point it’s all doing and no creating. I, like so many others, am always busy with important but repetitive tasks. There is a lot of thinking  and much feeling the pressure to not forget that feed/medication/appointment or whatever it may be…but not a lot to expand and develop the old brain. And certainly very little opportunity to sit back and admire a creation. Unless you count the kids themselves! Washing keeps getting dirty, continence requirements need to be met, phone calls made and emails sent, and driving, driving…I’m always driving. So, without actually making a resolution, this year I plan to mix it up.

I hope to find enough time and head space to write…and take photos…and do the odd bit of sewing. My goal has begun well {there may be a little sarcasm in that}. I am back in the swing of the Photo a Day challenge…if not a bit behind and publishing weekly. I started to sew a lovely kimino cardy just for me…yes, started. The writing though. This very draft has sat, partly written for a few weeks now. So I am fully immersed in the irony of my blog…and my goal.

But I shall push on because there is something about the creative process that I need. Maybe we all do.  The possibility of new brain synapses zinging and left and right side creating harmonies is worth my time. Time just for me off task and smiling.  I AM about to press the old “publish” button so that’s a win!

The Last First

Do you remember lolling about on long summer days as a kid? You felt like they would last forever. And waiting for your birthday was a torturous countdown of weeks, days then hours. Gran, or some other “oldie”, would remind you that life goes by so quickly but it didn’t ever feel like it would. Then. When life was leisurely. Yesterday I blinked and today my son starts year twelve.

He has already turned eighteen which was tricky to get my head around but this feels even bigger. Once he finishes school it will be different…the end of an era. It’s weird isn’t it? My mum brain {or maybe heart} is clinging to a baby who has been grown for many years. The young man in his place is growing more independent just as he should. But…sigh.

I watched him walk to the station on his last first day feeling proud and a bit sad. Living in this family with the girly for his sister is…different. He has had to deal with lots if ups and downs so is a bit more worldly than his age suggests. I think he is growing beautifully. He is a caring friend. He is witty and funny. He is terrific at reaching things on high shelves! And he has a sister who likes nothing better than to gaze at him adoringly. The timer on his childhood has buzzed {l o u d l y} and will continue to emit crazy odd beeps on days such as this but I think he is ready…even if his mum is not.

Teen Queen

Recently I came across a quote which resonated. “Disability does not mean inability.” {I can’t recall where I read it and a quick search reveals many people have said it so I give credit to them all!} It applies to our girl in so many ways. She may not speak but communicates in other ways. Her legs don’t carry her around all of the time but her wheels sure do. Little miss may not be able to climb out of the window or swear at me but she is thirteen and a half and is wielding defiance like a sword!

The kid’s expertise at reading body language and facial expressions have helped her to develop epic skills of pushing my buttons! You may wonder how dear reader…let me tell you. It begins first thing in the morning when she has buckets of energy and I don’t. Getting her dressed can be akin to defending myself against a black belt with a wet paper towel. The legs kick {c o n s t a n t l y}, arms flail around and butt lifts off the bed with reps that would make a pilates instructor proud. “She can’t help it…she has cerebral palsy” you may think. Yes she does but she sooo can help it!

The attitude and determination with which she tackles life are a little harder to smile at when aimed at my stomach with full force before I have so much as had a cup of tea. She fools people with her sweet smile and delightful personality…there is a ninja hiding under that beautiful mane of hair. Let’s talk about planking. It may not be such a thing anymore but no one has told the kid. She times it perfectly. As soon as the hoist sling or two people lifting get close to her wheelchair under the impression that she is cooperating…boom. The head flings back…bottom up…legs straight just waiting for a selfie and social media praise for her extraordinary plank. Meanwhile poor helpers desperately encourage/plead/beg/yell at her to BEND. Guess what she does next? She laughs! Yep.

I often finish the morning routine in a sweat of exertion and frustration. A couple of days ago when she sat sweetly in her chair after a Tyson like fight to get pants on I asked her why. “Why do you do that when I know you can cooperate beautifully? Do you enjoy getting mum worked up?” Her answer? One of the most enthusiastic nods I have ever seen. So to anyone who may have thought the teenage years would be a little more cruisy with a kid with CP…umm no. Hormones still run rife and she finds a way to make her mumma crazy {ok, fair call…craz-ier!}. I have a little confession…I am a bit proud, she’s so clever even at my expense. But please don’t tell her. I am sure she has more weapons up her sleeve!

Class of 2016

This is it. The culmination of 7 years…12 years…39 years. I didn’t anticipate when my family moved to this little foothills town 39 years ago that my children would attend the same lovely school as me but they have. And now they won’t.

What began again twelve years ago with her brother was celebrated last week and will finish tomorrow.  Our gorgeous girl is growing up and moving on, just as she should, and she’s excited. Me? I’m sad and nervous and not ready. I have (because it’s all about me 😉 ) been an emotional sop all week. I cried watching kids I didn’t know at the school concert,  am getting mushy over Christmas ads and bawled on graduation day when I bumped my hand. It is a big change but when I say it’s all about me that is just the sadness. The excitement and celebration is all about her.

Missy has conquered this primary school thing. She has had to adapt to a noisier, busier setting every Friday and work in a different way. The girl has friends. She has learnt…and she has taught. Last Thursday she popped on the dress she chose and proudly joined her graduating class…just as she should. (I was the one harbouring wads of tissues!) Tomorrow is her final day. She will have her bear signed and join her friends for final assembly. (I will again be the one with the tissues.)

To you my gorgeous kid….the next stage of life now unfurls itself at your feet. Make the most of every opportunity. Take chances. Shine your light. Be brave. And if you could turn back every now and then to pass me a tissue I’d be ever so grateful.  Go and enjoy. {{sniff}}

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.