Another Day, a Little More Insight

I have a confession to make. When our girl was born I did not know cerebral palsy. I had heard of it, sure, but was oblivious to what it meant for her…and for us. I didn’t know what it looked like. Yes, that’s where I was at in my post birth, crazy grieving state. I wanted to know what cerebral palsy looked like.

So I asked. The only person with knowledge I could trust with such a question. My lifelong friend (who is an OT) said…well I can’t remember her exact words anymore. A lot of that time is hazy. She did reassure me. The feeling I remember from that conversation is that my girl will look like herself. That CP has no discernible features and even if it did that we will be ok. Looking back I am astounded by my lack of knowledge. But I use this experience now. If anyone asks an apologetic question about Missy I’m able to truthfully say that I too didn’t know this, once.

Now I reckon I could see signs of CP in a baby before a doctor (exactly as one experienced mumma once saw in my girl)…not because there is a “look”, but there are signs. Now I celebrate the lessons and people this kid has brought to us. So, on International Day of People with a Disability it’s not simply about generating awareness for me but a celebration of some of who our gorgeous girl is. She is a kid first…a friend…a thinker…a sister…a joker…a daughter and a kid with CP.

In her words of reflection back on World CP Day….. “Am thinking I have an idea. The universe chose me to be different. I answer, I feel (the) same. I understand. I want to do what the others are doing thank you. I’m ready. You need my cerebral palsy to help you world. Think; come alive; give love; be better friend; be you. (I) can be proud.”

So very proud, kid.

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Carers Count

Recently I applied for a job. There was quite a gap in my CV employment history…14 years worth. I debated the idea of putting “caring for my child” as an occupation. It certainly consumes my time but is it a job? The idea that I, as a carer, thought this gig was not worthy of being on a resume seems ludicrous. It’s also a very good reason why the theme of Carer’s Week this year was Carers Count.

Carers Week may be a lovely idea but it didn’t change what I had to do that week. I didn’t go to any events. The care always needs to continue. I did manage a coincidental catch up with a lovely bunch of mums of kids with complex needs. My hope is that there was enough media exposure to have people pause and think about what we do. That maybe some call centre workers who, when told my occupation is carer, will refrain from redefining it as “house duties”. Sigh…maybe. I often explain to people that a lot of what I do is parenting. But it is much more than that.

To fill the shoes of unpaid carers with paid workers would cost $60.3 billion in Australia annually. That is over one b i l l i o n dollars a week! A week! It’s any wonder we’re all tired. I imagine you’ve heard it all before but it is a constant slog. There are always calls to make, emails to follow up, extra cleaning to be done….and that’s when she is at school. The prospect of the NDIS gives hope that carers will be able to be more well supported in their roles. Hopefully we will be supported enough to enable some self care…and maybe use our collective and unique skills to work outside of caring.

I didn’t get that particular job but I did gain a different perspective on the value of what I do every day. I have learnt so much. I can multitask like a breast-feeding-fire-twirler-doing-a-load-of-washing. (I’m not sure where that came from either!) I’m a manager. I’m a personal assistant. I fill the roles of disability support worker and therapist. I speak the medical lingo like a pro…I know this for sure because I did a Facebook quiz! So I sat up straight and proud and put “carer” on my resume. Anyone hiring?

Punched in the gut

The girl has been a bit difficult this week. Hoisting her in and out of bed is a challenge when legs are kicking and her dystonic body is arching. A few support workers have needed to call in the reinforcements (a.k.a. mum) in the last few days. But what happens when the reinforcer needs help? Grumpiness that’s what! And then…heartbreak.

I thought the worst thing was having so much trouble getting her in her wheelchair; that her squirming and pushing until my back hurt was difficult. That was until she told me why. She’s a smart kid. She can be so helpful. She can make her crazy body cooperate. So I asked her why she had been so difficult. (Because) “I’m telling you something I born different”.

I felt the world stop and the tears start. She looked at me like she thought I want her to be different and my heart broke. Her eyes spoke of a body that fights a daily struggle between what she wants to do and what her brain lets her. And all I could do was hug her and sob apologies.

Of course I don’t want her to be different, not for me anyway. For her I would take away the pain and challenges if I could and if she wanted me to. The thing is, this kid is way more accepting of who she is than most people would give her credit for…even her old mum some days. The challenges remain. She is fourteen now…and tall. I am short with a stuffed back. These facts will often butt heads. There is no easy solution. Well she had one. “I have an idea. I am go away to friends house. Have play”.

It was a great idea. A sensible option from the kid. Some time apart to take a breath. But she can’t just go to a friends house.  It’s not that simple. (Aside from the fact that no one ever asks her…sigh). Giving her lunch is more complex than making an extra sandwich. Everything is more complex. So I bawled some more, we stayed home and figured out how to feel better together. Wii Dance is good for that.

I’m not sure why I was so staggered by her insight. I should know her better by now. I think it just hurt to hear. Because the grief never goes. And tonight, despite smashing out some moves to “Cake by the Ocean”, I’m feeling the weight of “different”.

Heavy

Some days hold more weight than others. It hasn’t been a horrible day…but it has been a day.

The thing that can drive me crazy about this gig is the sameness. Exactly the same sameness (can I say that?) that keeps me sane through it’s routine. Today brought change. Not a lightening-flashing-thunder-crashing adjustment but something that will take time to get used to.

My mind is full and my energy drained in equal measure. Hanging around a hospital all day will do that to you even on days of “just appointments”. Yet life still nudges along with dinner to be made and washing done.

Today, though, the grief washed over me. It does that. It snuck up as we finished our hospital to do list and reminded me that our sameness makes us so very different. That the little change I have to accommodate wouldn’t have caused a ripple for someone else. But to me, today, it is another thing to do and think about. Amongst all of the other things…the things that began at that very same but old hospital next door with those diagnostic words….”It looks like she has….”.

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.