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.

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}}

Heavy Stuff

Holidays are fun, right? Well they are supposed to be. I enjoy spending time with my children. Really. It’s just…the stuff. That which still needs to be done (These people need food. Every. Single. Day. And the washing. Don’t get me started.). And that which can’t easily be done. That is what is messing with my head today.

Last week the girl was pretty sick but we did manage a couple of afternoon outings once her coughing had settled. I have tried to make fun and take the focus away from a fortnight almost sans help. With success, I think. The issue seems to be that I haven’t learnt from my mistakes. I continue to look at Facebook.

Happy snaps from all over the world greet me daily. Which is great for the snappers. For me, today, it feels heavy. The weight of the stuff we can’t easily do as a family is making me sad. It may sound ridiculous considering we adventured with another wheelchair wielding family on the weekend. How many wheelies can say they bumped along track in a four wheel drive looking for snow?

We have good times. Fun. Joyous times. We push the boundaries of expectations for this special kid. Even then I need to consider phone range and charging equipment and measuring meds and timing feeds and temperature management…you get the picture. {{sigh}} Tomorrow my big girl wants to see a movie and have coffee. So I shall go now, sleep off the heaviness and wake to a smiling girl. Tomorrow I will be ready to enjoy the stuff we can do.

The adventures of Ben and Holly

This morning I sat briefly as I administered medications. Missy was watching television before school. Ben and Holly (of Little Adventures fame) were playing hide and seek. Cute right!

The words came out of my mouth before I realised. “That’s a fun game isn’t it.” Well…she may say it looks fun. But she has never played. Never played Hide and Seek. Sometimes it’s the littlest of things that punches you in the gut.

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.