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.

Counting Blessings

7 weeks home; 2 surgeries; 6 whole hospital days plus visits; 9 wound sites; 16 medications; many hours of extra help…but not enough; 1 tired, crazy mamma and infinite trust and patience (mostly) from a 14 year old girl. The numbers are overwhelming but can never tell the whole story (as a maths head it pains me a little to say that!). It is the moments between the numbers that count. (Pun unintended…or was it?)
To say Missy’s orthopaedic surgeon is amazing is both unusual (orthos are not always renowned for their sunny disposition) and an understatement. The work he does on my girl scares me but, even when he changed the consent form moments before I signed, he has the skill, confidence and charm to win us over. He is dedicated and fiercely supportive. He pauses and takes the time to talk with her.
There have been times of pain and grumpiness for Missy…too many. Amongst it though the girl has used her words. She worked so hard to describe how she was feeling and what she needed. Her ability to differentiate between discomfort due to muscle spasms and other pain and then request the specific medication blew me away. She is proud of herself too.
And the difference? She is only just out of plaster so it’s not all apparent yet but what we can see is wow! Imagine trying to sit a plank of wood in a wheelchair. Then, just when you manage to bend enough to get in, it straightens again…that was our girl. Now she sits tall and proud with her bottom all the way back in her chair. And her feet! Her left foot has been transformed from a twisted mess to an actual foot. Dancing is already more comfortable for her which is great because her motivation for all of this was …”I dance”.
The irony of this little post-surgical contemplation and finally having a few minutes to sit and write? The draft was written on the only piece of paper I had with me…the back of a hospital appointment letter. This life! Amongst the challenges and fatigue and heartache there are blessings. And I am glad of a little time and quiet to count them.

Happy Sunny-versary

My baby has been neglected lately. No not the real one, she is getting plenty of attention. That’s my point. When the care levels of the kid increase (necessarily) my time and headspace for writing decreases. I miss it. To be neglectful even when busy is poor form. To do so on Sunshine’s birthday feels wrong.

Four years ago I took and deep breath and published my first post. It can be confronting putting my words out there for anyone to see but the support of you fine folk out there has spurred me on. Over the last four years 5393 visitors have taken a staggering 8702 views of my blogs. I am proud to say I have made over a century with 105 published posts (and many drafts laying idle…oops).

Happy 4th Sunny-versary little Sunshine in Puddles. May the second half of this year bring you more thoughts and musings…I can only try.

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.