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.

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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.

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}}

I dance

The girl doesn’t have much control over her life. Many choices, particularly medical ones, have necessitous outcomes. So while she always has things explained to her and has the opportunity for input she can’t always have the final say. I aim to offer her communication book during any appointment. This is both to give her the chance to comment and to remind medicos that her voice is important. At last weeks pre-botox appointment I did just that. My girl grinned as she navigated her book to say her piece. Her words? “I dance.”

Tears welled as I looked at the proud, determined kid before me. Dance classes have become more important to her than I could have anticipated. They are fun…and so much more. She is motivated to make her body work. To open scrunched hands. To lift uncooperative arms. To coordinate moving her legs in her wheelchair as instructed by her teacher. But, clearly, she wants more.

The girl can see that Botox treatment gives her a chance to improve her movement. She recognises that the medicine that will make her arms and legs less stiff can do more than enable her to be dressed more easily or assist with other aims we have for her. It can help her achieve her own goals. It can help her to dance.

 

 

 

 

 

This seems a fitting quote for our determined girl……….

“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.”
Vivian Greene

Grin and we might be able to bear it!

Accessibility is important in literally being able to get to school. But it isn’t everything. Access can be tweaked and small steps ramped if the school is willing. That is the key…being willing and accepting of a kid who does things a little differently. Last week we went on a somewhat scary tour of a mainstream high school. We listened to the principal and saw the facilities. We appreciated the ramps but were most impressed by the smiles. Smiles from teenaged students!

I now live with two teenagers and know they sometimes get a bad rap but they are not known for their cheerfulness. And the sunny looks happened not once but several times! In a world where my girl still has people stop in their tracks and stare, I was pleasantly stunned. As we had arrived the reality of transitioning to a whole new school hit hard. I was tempted to get back in the car before even trying. I know my girl so well but it takes a lot of time to teach all of her intricacies to others. And secondary schools can be prickly places for the most confident and able kid.

To succeed at school one needs to be able to communicate. Learning how missy talks takes some time and effort. And, of course, recognising a smart, funny person with a lot to say. Seeing a young  lady not just a wheelchair. In class time much of this will be the responsibility of an aide. But peers are so important to time at school. And these students filled me with hope.  For me, last week (and often) it all begins with a smile.

Change is in the air

The house is so very quiet. It happens every time they head back to school. But this year feels a little different. This year they have both moved up the ladder. The boy is now in VCE with only two years of school left…eeek! And the girl….she is currently enjoying (I hope) her first day of senior school….s e n i o r. Being at two schools with slightly different criteria tomorrow she has her first day of Grade 6…her final year of Primary school. A year of endings and beginnings at the same time.

Many families are tackling the push and pull of change this week. As children begin primary or high school our babies suddenly look like giants . There will be tears and smiles and lots of sighing…and that’s just the parents. If Missy is anything to go by the kids will adjust and embrace their new challenges a little faster than mum and dad. Having said that yesterday my girl was nervous. Her senior campus is on the same site as her old primary but expectations and some of the people will be new.  After a few chats she downgraded her apprehension from “frightened” to “a bit worried”. So is was with trepidation that I put her on the bus this morning. She was wearing a little smile which I hope stayed and grew wider as she saw her friends.

Change is not my thing. So I have been (am) struggling  with newness of this school year. But it is more than that. For a kid like Missy the future after school is less what will she chose to do and more what will she be able to access. Will she be able to access further study if she wishes? Will she be able to engage in meaningful  interaction with her community? Will she be able to work? Who knows. So today is a big step closer to that uncertainty. For now I will try to remain hopeful….and live in the present. To all families heading into new stages this week…all the best of luck. May your children find their feet quickly and may you have a stash of good wine and/or chocolate close by.