Dumb

Missy had a speech therapist in her early intervention setting, at least I assume she did…I can’t actually picture a face or recall a name. The focus then was mainly her physical abilities and limitations and accessing equipment. She did have a very basic eye gaze board with a peep hole and two choices displayed. By the time she arrived at school that had progressed to four choices! Without a reliable nod or shake we interpreted her smiles to confirm what she was saying.

As a parent {and a highly strung one at that!} leaving the comfort of early intervention for school was a terrifying prospect. The school staff were familiar with the wide-eyed terror of newbies and were gentle. Two of the gentlest who cemented my choice of school were her teacher…and her speech therapist. In early intervention the physiotherapists had been my go to, her key worker and our safety net. This seemingly new breed of therapist presented  a simple Pragmatic Organisation Dynamic Display {{PODD}} book and my girls world changed.

I learnt from gentle-speech-who-gave-my-child-a-voice, let’s call her Miss Honey, to assume competence. If I thought she reacted…she did. If I thought I saw a choice made…I did. Previously I would have seen myself as my daughters biggest fan and greatest advocate but within weeks Miss Honey was reporting nods when I had only ever seen smiles. And then my kid exploded in a sea of language and expression. Choice is so important and had been our primary concern to this point. I thought I knew her  well so often filled in the gaps but when my “she will never communicate, learn or interact with you” child started to say the unexpected it was a revelation. Her personality began to fully reveal itself and it was a sight to behold.

The aspect of my child’s disability that makes me most sad has nothing to do with her but rather people’s perception of her. Too often people assume having a complex communication disorder means she has nothing to say. That is simply not true. The only thing that was lacking was a reliable and suitable way to say it! As my daughter developed her proficiency with her PODD she showed us her sense of humour. She revealed her observations of life…and reminded us she is always listening…a l w a y s!

Yourdictionary.com defines dumb…”The definition of dumb is unable to speak or someone or something that appears stupid”. Unfortunately many people assume “unable to speak” suggests someone is “stupid”. My pleasure and mission in life is to show those people they are wrong. Thanks to the Miss Honey speechys in our world and a super determined girl we are well on the way.

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.

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.

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.