A year and a half on…

Whoa its hard to believe that it has been five whole months since my last post! Just getting on with LIFE took everything thang we had and there was nothing spare to document and share our experiences. But I am ‘back in the saddle’ so to speak. I love the wonderful interaction I have with people regarding the blog, whether its right here in town as I apply sunblock to the kids at the local pool or from far, far away. I’m keen as mustard to start posting about a whole range of stuff we are going to try this year but first lets have a wee look back at where we have come from.

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June 2015 Matilda in intensive care and hardly responsive.
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Matilda circa 2016! Rockin pink hair ends!

A year ago I started to write a post that I never completed. It was to be called ‘Meanies everywhere.’ which was a phrase Matilda used one night when frustration overwhelmed her and reading it now I can feel the pain of those days. It went like this:

You know I planned this as a blog about treatment and rehab. But as time goes on learning words seems far less imperative to learning LIFE. Matilda rails against having to practice the skills she once knew and this week has tearfully explained that her friends don’t want to play with her at school. She says she asks them to play with her but they say they are playing with someone else and she can’t play too. This is so common at school where alliances form and change on a daily basis but for Matilda it says one thing. There are ‘meanies everywhere’. Mum and dad are forcing me to do all this horrible work and now my friends don’t want to play with me. As she scratches at my face, rips up her homework book, pulls at her own hair and says that she wishes she was dead, I keep insisting that we move forward, finish the work and hold her tight in a sweaty hug. I feel like a meanie. I also truly believe in my heart that if I don’t help her to recover the best I can, if I take the easy complacent route, that I will be a meanie too. As with her friends who need time away from her strange social skills and are not mean, I am not mean either but bloody hell I feel it!-

Reading that a year after I had written it wrenched at my heart but also made me realise just how far we have come. It must have been a bad day as her friends have been great! Yesterday Reuben started high school and Matilda started with a new teacher and class aide. Everything was a little topsy turvy with a couple of our standard glitches but pretty much all family members had a likeable, interesting day and there was no mention of ‘meanies’ lurking. The kids both exuded an overwhelming sense that despite the hot, sweaty  weather…..everything was COOL!

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2016 ended with a bang. Matilda won a Shining Star award at her dance performance and Reuben was ‘dux’ of Year 6 after a really weird year – proud parents!

The crazy thing is that this is not because of some ‘magic pill’ that has ‘fixed’ our lovely Matilda or that she doesn’t still struggle on daily basis with what she has lost and dealing with the consequences of her acquired brain injury. It is simply that we, as a family, now operate like a well orchestrated machine (most of the time). We work together to lessen the chances of blowout and when they do sneak up on us, we all act to neutralise any negative feelings as quickly as possible.

This high level of awareness or ‘being on call’ in your own home/life all the time can and does take it’s toll at times. The restrictions of what we can and can’t do in a day, where we can for holidays (Is there 24 hr emergency department near by? How long is the drive? Is there a quiet space for day sleeps? ) and feeling very timetabled (medication and meals at set times, has enough water been drunk, is there the right kind of food in the house and watching her 100% when swimming because of seizures etc) can really grind you down even though they are the very things that enable Matilda to function as well as she does, to be as MATILDA as she can be.

We have also learnt the power of accepting help from our wonderful friends, family and community. Just one example is a wonderful friend who enabled us to have less anxious nights by having a device fitted under Matilda’s mattress that sets off an alarm if she has a seizure.  Without it we would have spent half of our nights sleeping on her floor with one eye open. The respite that this has given us has been immeasurable! We may soon be able to move onto a similar device that she wears on her wrist that we are experimenting with at the moment. Such generosity and thoughtfulness has repeatedly stopped our ‘titanic’ from sinking.

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Mostly we’re working on not sinking but have the occaisional “flying” moment like Jack & Rose (Titanic 1997).

So here’s a snap short of our  ‘HAPPY BRAIN – HAPPY HOME MANTRA’

  • water  – a least 1 1/2 litres over the day – little bits all day.
  • protein – at every meal and snack times (argh that can be a killer to work out).
  • exercise – a daily dose and even better if it challenges balance or dual tasking.
  • sleep – regular, good quality, lots of it and not when overtired or at wits end.
  • seizure monitors – oh that peace of mind for parents!
  • get outta here – have breaks away from home/change of scene.
  • socialising – trying to sustain everyone’s friendships…even if only tiny doses.
  • fun – replacing memories of hospital and loses with good times.
  • therapy – keep going back there, teaching to mastery, reteach when forgotten.
  • technology – looking at software/apps that may help with memory/literacy/typing
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Powerpoint for talking with Matilda’s class about her Encephalitis and seizures. Its a little emotionally exhausting for both of us but SO WORTH IT!

And my final mantra item is HONESTY. We try to call a spade a spade – with Matilda, with each other and the world. We talk openly with her about having ‘a big scar’ on her brain and don’t make promises like ‘everything is gonna come back if you work hard’ that may not be true. I tell my friends when I feeling ground down or like I want to run away from home. Reuben tells us when he has had a gut full too. If all else fails there is always yoga, kite boarding or singing the songs from Matilda the Musical at top volume in the car!

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“Never again, will I doubt it when my mummy says I’m a miracle” – Revolting Children

So bring on 2017. I’m really looking forward to sharing whatever mischief we get up to!

 

 

 

Talking to your child’s class-Advocacy

On Friday I had the lovely opportunity to speak with Matilda’s brand new Year 4 class.  I already knew a lot of the kids but there were some sparkly new faces. Experience has shown me that knowledge nurtures compassion. I can’t tell you how many times I have overheard children talking about ‘the naughty one’ in their class, when I know that child has a some kind of special need but the confidential nature of my work prevents me from saying anything. It breaks my heart. I want to stick up  for the child and explain why they are a little different and why it is OK. So I know that kids and adults alike, fill in the gaps when they don’t have a clear idea of why someone is different AND that the ‘explanation’ they form may not be accurate. I didn’t want this to befall Matilda. I have attached the video despite my accent sounding all over the place! Please ‘like’ it so that we can help other parents to locate it if they need some support in this advocacy area!  

To see the video click on any of the red or italics text above or HERE.

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Using a powerpoint to keep the kids engaged.

I know that many people are terrified of public speaking and you can times that by  about a thousand  when its a bunch of wriggling kids eating their morning fruit (crunching noises in the background of our video!). But you know,  it is worth all the butterflies.

I have heard many inclusion teachers talking about waiting for ‘teaching moments’ when another child says something that is a bit wonky about a child with a (dis)ability in their class. The problem with this ‘wait and see’ approach is that many of those conversations, assumptions or worse case teasing/bullying moments happen away from an adults earshot. Also saying ‘Don’t say or do that’ is not the same as providing ‘the story’ about your child. It is ‘the story’ not the label or diagnosis that will enable kids to generate their own natural compassion through understanding.

Here are some really uncool ways I have heard kids and adults misinterpret what is happening for a child with special needs:

  • Headphone for sensory reduction – “How come they get to bring stuff in and we don’t.”
  • Quiet corner use – “Baby” “Teacher’s pet”
  • Stuttering – “Her talking’s so gay.”
  • Sniffing and getting into other people’s personal spaces (With Tourette’s Syndrome)- “He’s always naughty.”
  • Loud volume/Impulse control (Not deaf or hearing impaired) – “He can’t hear.”
  • I have overheard adults commenting of other people’s parenting skills when a meltdown happens in public.

I am not making these up and they are the tip of the iceberg. As Matilda is the picture of physical health outwardly and is good at brief social chats, many people find the idea that she has on ongoing significant difficulty (acquired brain injury) really hard to get their heads around.

Top Tips for Talking to School – Kids or Teachers

  • What is you intention? Ask yourself what is it that you are trying to get across. I had a few ideas.
    • Matilda is still bright despite what she has lost.
    • Matilda is incredibly brave and a really hard worker.
    • Matilda finds physical things much easier than thinking/talking/listening.
    • Matilda still does heaps of fun things but does get very tired.
  • Use pictures/powerpoint. Kids love something to look at and the visual learners will soak up the pictures more than the words.
  • Keep it short. My talk was 5 minutes in practice but was a way longer in reality and then you need time for kids to ask questions.
  • Practice. After I selected the powerpoint slides and wrote a bullet point script, I actually praticed with my own family and a bunch of kids from our street. Their approval was important to me.
  • Tears. If it is really new and you think you may burst into tears, have a back up person who can just read from your notes. I think its completely fine for people to see the ‘truth’ about how our lives can make us feel – not just always the ‘brave together face.’
  • Tell the story. Most people have no idea what serious hospitalisation or disability is like. Don’t be afraid to tell the story. The good stuff and the bad stuff. Kids are brimming with natural empathy and compassion but they need to know what happened/is happening for these to be ‘activated’.
  • Questions. It doesn’t matter if the kids ask you questions or not. They will soak up the information anyhoo.

Some people have said to me that they don’t want their child labelled or stigmatised and that ‘going public’ will make that happen. My feeling is that we should give kids more credit and have faith in them.  They know exactly who can read what books in their class and who is the strongest or weakest at sport. There is no fooling kids so we may as well keep them informed. The kids who tend towards teasing/bullying will probably go there anyway, and there may be a slight chance that understanding why someone is different my help them to reign in their urges to say the wrong thing. So…..

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Give it a go. The kids will help you along!

Talking about Encephalitis to teachers & classmates

During the last week that Matilda was in out-patient’s rehab I spoke to all of the teachers at her school and her classmates. It’s a large school of over 600 pupils, so the we started with those who would have the most contact with her.

Many parents shy away from ‘going public’ about their children’s difficulties/diagnosis  and I completely understand the fear that this may work against their child, increase teasing or stereotyping from labels.

After many years of weighing the pros and cons as a speech pathologist with client’s parents and discussions with local friends, I was very keen that Matilda’s peers knew what had happened to her to some degree. I believe that knowledge leads to compassion and that ignorance can lead to…well filling in the gaps. People often come up with very odd explanations for why a person is slightly different. I hoped that a little bit of understanding would prevent any misunderstandings and foster acceptance of her new self.

My talk with both the staff and her classmates was fairly similar – some easy medical information and strategies for communication.

This was part of it….

“Matilda would like you to know that she is not silly even though she can’t always tell you what she is thinking and is working extremely hard to rebuild what the virus took away.

If you are a friend, teacher or someone helping her in the playground, please be patient. She is great at drawing what she wants or giving you a clue, like making a circle out of a piece of wool to tell us she wanted an apple sliced. Asking her questions that she can answer with a yes or no is great. Is it at home? Is it at school? ”

Last night I came across a great resource for explaining Encephalitis to children between 3-9 years, Gilley the Giraffe Who Changed. It’s a fabulous little book published by The Encephalitis Society that can be purchased as a book, viewed on screen as a PDF or animation and has associated games. I know that I will need to have a chat with her new class next year and will definitely use the animation on their digital white boards.

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Although Matilda did not attend either talk, her friend Sia who had visited her often in hospital, was on hand to answer questions. Hands flew up all over the class and I had to smile when one child asked her “The Friend’s Lego you played with Matilda, was it a present or did she bring it from home?”

Great to know they really soaked up the take home message!