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!

 

 

 

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Detective Literacy! On the case of spelling!

Ok so Matilda and I have now been doing rehab together for months and months. Many a day the ‘crankies’ invade my programming and little gets done. But we have all learnt to see the flash points as Matilda’s brain talking not her. Spelling is proving to be very stuck and we have seen very little improvement, so we on gonna give that a whole lot more love. Today Matilda asked if we could incorporate her speech therapy into being a detective, as she and a buddy have been playing spys/detectives a lot lately. What ho! Give me 5 minutes my lovely and lets go….

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First I had to find….Detective Literacy!

The Word Bank had been robbed! All the ‘u’ and ‘a’ words had been stolen. Our only clue was that the culprit had walked through spilt green paint as they left the scene of the crime.

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Follow the green footprints….

There were several different routes…which to follow?

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Suspect number one – his alibi was tango dance classes on a newly yellow painted floor!

Bag the evidence and move on.

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Forensics at work collecting words!
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Suspect number two had a cheesy grin. Not sure about his iceskating in butter alibi.

But where is the thief. The last trail of green footprints goes cold…

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Not the dreaded South-Asian-otter-word-thief from Australia Zoo!

DC Speech-Pathologist-Mummy-Rehab reads him his ‘WRITES’ ( lame joke).

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Always paperwork when a crime is solved!

A word sort based on work from Words Their Way (link here).  Phew lucky we had a detective in the house!

Just as an added bit of authenticity, these attempts to make learning fun don’t always go according to plan. We still had a little meltdown when the game became serious and the words had to be sorted and the sounds practiced being said. But by that stage our detective was a little hungry and tired…..

Tutoring – literacy and numeracy

There is not a great deal of tutoring available in our beachside town and my clinical experience as a speech pathologist led me to believe that we would need a highly repetitive and structured system. Before we left rehab I had booked Matilda in to be assessed by a Kumon teacher in a nearby town. There may be many other ways to rebuild an entire schooling for literacy and numeracy – this is just what was immediately available for us.

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Matilda has done a LOT of Kumon workbooks.

Kumon as a tutoring system prides itself on being very individualised  to meet the students needs and to promote independent learning. As their website states “Students progress smoothly in small steps. Students often encounter difficulties advancing on their own if the gaps between the topics are too wide. Thus, the worksheets have been specially designed to advance in small steps, enabling students to progress smoothly, while learning at the level that is most appropriate for them.”

Matilda had lost almost all of the skills that she had learnt at school with regards to reading, spelling and maths. It was incredibly daunting to work out what to do and frightening to think it may not return.

Initially she started doing both the maths and reading/spelling workbooks. Before she returned to school she worked through two of each topic which took approximately 40 minutes. She now does one for maths & english each day. This work was super tiring for her and there are many sounds that Matilda still can’t ‘hear’. We have a range of gestures or verbal clues e.g.’The start of Reuben’s name.’ for /r/, to help her identify the letter-sound match.

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Starting with single sounds through to words and sentences.

So now she is reading a few simple kindergarten books, Where is the Green Sheep and a couple of Dr Seuss. She can spell a few sight words and simple three letter words  like ‘dog’. All progress has been so thrilling, even tiny little steps. Sometimes it feels as though she is going round and round and then suddenly we will have a little spurt of improvement.

Rewards, distraction, bribery and corruption!

It would be a big fat fib if I said that getting the Kumon worksheets done everyday was easy. There are days when it takes all my patience to work through her anger outburst to find a solution so that we can continue. I persist because the evidence before my eyes is that steady work leads to steady progress.

Some of our ideas for ‘getting it done’:

  • Setting up well at the start – clear desk, little noise, well positioned etc. If we are chaotic she becomes chaotic.
  • Distraction – just a quick few words about what we are going to do next or something out the window.
  • Ice – sucking ice or ice blocks really helped in the initial few weeks.
  • Reward charts – we have done them over three weeks for a big prize or 7 days for a small prize. These must be well chosen or she would have given up.
  • You choose – letting her decide what we will do after the Kumon.
  • Change of location – doing them outside, on the floor etc
  • Offering physical activity afterwards – going to the pool, handball, play in the street with friends.
  • Don’t try when she is hungry, thirsty or obsessed by something else.

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Usually logic or explaining why she needs to do the work is the least successful, as is getting upset or angry. Interestingly she doesn’t appear to like being praised either.

For now Kumon  is working for us. That is not to say that it would work for everyone or that we won’t need to try something else in the future. It is an international program so there may be a tutor near you.

One step at a time!