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.

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.

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.

Mum…no

My kids both amaze me. They are both compassionate, caring and smart people. The clever bits are more difficult for most people to see in our girl. Not talking {in the traditional sense} tends to make some folk miss her intelligence. But tonight it shone. She needed something and let us know loud and clear.

The bed time routine around here is involved and lengthy. There are a plethora of medications to measure and deliver. A book to read. The usual PJs on and toileting after transferring to her bed from her wheelchair. She then needs a drink of water through her PEG and air vented out. Tooth brushing…face washing….special cleaning of her sore chin and cream applied. By the time we say goodnight a marathon  has been run. But tonight she protested. Her bed side was raised and we were walking out but she said “Mum no!”.

Sometimes she can be reluctant for us to leave so I list the bedtime routine to reassure her that all has been done and it’s time to sleep. Tonight she listened, expectantly. Then I got to one medication and her eyes lit up. I had forgotten it. She knew and she wasn’t going to let us leave without getting her point across. I’m so proud. And so was she…with a little “I told you so” glint in her eye. The kid is a rock star!

5 am

The “look” when strangers see Missy in her wheelchair is familiar now. It is part sympathy, part curiosity and basically says having a kid in a wheelchair would be the worst. But it’s not. There are challenges, for sure, and I do wonder if she longs to run and play but overall the chair is ok. The lack of talking though…that’s what gets me.
Missy manages incredibly well with her PODD book and her voice output Dynavox. The hope of assisted communication is more than simply conveying wants and needs…it is about showing yourself. And she does that. Her sense of humour, her intelligence and her curiosity all shine through. The device, though, needs to be set up so she has to be in her wheelchair. The book requires a competent communication partner, good light and an alert kid. Neither of these work for her at 5 am. At that time, and in pain, she needed to be able to yell “Mum! My leg is stuck”. But she couldn’t.
She got my attention alright. I went to check on her. But I misread her. I didn’t understand. I put another blanket on thinking she was cold. So she stayed as she was…for another hour. There was no yelling. No desperation. She sounded a bit sad. Even when I went back in I tried several tricks. “Do you have a headache? Is there air in your tummy?” I vented her PEG, I gave her some water and finally I pulled her blankets back.
The sight still puzzles me. A leg should not be at such an angle. I don’t know how she did it. The relief when I gently moved her leg was immediate. It didn’t seem to be a sudden reduction of pain. What I saw was the relief of being understood. And that says everything.

“This is me”…an introduction

Every year I ponder whether it is necessary to “explain” Missy to her new class. It hasn’t seem so the last few years sticking with much the same bunch of kids at her mainstream school. This year she is in a composite class. So half the class don’t know her very well.

When she was in kindergarten the teacher and I ran a small group making stress balls from balloons and rice. It was a great opportunity to discuss muscles and how the brain makes them work.  Young kids are masters of the straight up question so it was a lively, effective session even with such young-uns .  I  also sent home a letter to all of the other parents with a brief introduction and welcomed them to approach me if they wished which worked well…as far as I could tell. There were no sudden silences as we rolled into a room and at least one mum mentioned a lovely bed time chat she had with her child about friends with similarities and differences. Nice.

Once at primary school, the principals idea was to simply let her be part of her class rather than point out her differences. I went along with that for a while but this year has brought a new teacher, new aide, a bunch of different classmates, a desire to focus on communication with her peers and a girl old enough to decide for herself. Today at school she told her own story. I typed her ideas…and edited under instruction (may I say she’s quite the critic!). She delivered her story via her voice output communication device to a captive audience. And this is how it went…

Hi. I think you all know my name but I wanted to tell you a bit more about myself. As you can see I need wheels to get around and I don’t talk the same way as you. That’s because I have something called Cerebral Palsy. My brain was injured before or when I was born. My brain still works well for thinking but it doesn’t tell my muscles what to do very well. So I do things differently and need a little extra help. I enjoy doing the same kinds of things as you. I like to read books, watch TV, bake cakes, swing and do craft. When you talk to me I will answer in the way you might if you have a sore throat. I nod for yes and shake my head to say no. I take a little while to make my body do what I want so you may have to wait a sec. When I want to say more I use my book. I look at the section of the page then the colour of the square I want. I’m really quick so you may need to ask me to slow down. Do you have any questions?

After school I asked her if it went well. She beamed and nodded in a proud “I nailed it” kind of way. Awe-some. I am in some serious awe of this clever young lady. Apparently she finished to the sound of applause and an enthusiastic hug from one little friend.  What? No one threw flowers. Maybe next time. It is a proud mumma day.