When therapy can’t be done!

Therapy! Whats that?  Sometimes we’re scooping up every last crumb of  energy to just get through the day. Our last month or so has really shown me a lot about what to do when therapy goes to hell in a handbag – other titles may be ‘Riding on the seat of your pants!’ or ‘Anything Is Better Than Nothing.’ or ‘Dammit,  Lets Go For A Run!’

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When the going gets tough daily ‘action sessions’ take priority over therapy!

In retrospect we left the hospital thinking that ‘the only way was up’. That if we just put in the right amount and type of effort, that we would be able to make slow but steady gains. There is much truth in this assumption but what we hadn’t quite expected was for some things to go completely pear shaped! Our neurologist’s euphemism for this is that stuff ‘evolves’ after this type of Encephalitis.

Over the past months Matilda’s seizures (previous post link here) progressed from simple focal or absence (Petit Mal) to the full-blown shakey kind that most folk imagine and call ‘a fit’ (Tonic-Clonic/Grand Mal). Even her paediatrician admits these can be bloody scarey  when you have no experience of them. The week of the first big seizure resulted in extreme fatigue and confusion for all of us. Then the poor little taker got the ‘wipe you out cough/temperature’ bug that had been going through our community. There were 14 kids away in her class the first day she had off sick! This delightful week of attempts to get temperatures down whilst being freaked out that they would throw her into a seizure was followed by our worst week of behaviour to date. We all know that even when our kids are babies, that their rhythms all go out of whack after being sick. Well, our ‘recovery’ week was a doozey (think about your average tantrum and times that by 17 million…O.K thats an exaggeration but you get the idea!)

Therapy was off the agenda. Anything that even remotely whiffed of a structured task led to screaming, biting, running away and general mayhem. And look I have to admit that as a speechie, it feels heartbreaking to not be able to work out how to reinvent a task to an ‘acceptable’ format for her when the storms are raging. It makes me feel like a failure but this gives me great insight into how many of the parents I work with feel, when the demands my profession place on them are simple not ‘doable’ at that time, in their home.

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Even a messy house can be converted into a mini roller-skating rink!

Luckily brain science and recent research has given us lots of ideas and backed up a lot of what our instincts (especially Dad’s who doesn’t have professional blinkers) about what to do so that we still feel like we are nourishing and nurturing her repairing brain, even when planned rehab/therapy is off the agenda.

COMPASSIONIF IT IS TOUGH FOR YOU, IT WILL ALMOST CERTAINLY BE TOUGHER FOR THEM.

  • It is so easy for everything to spiral out of control. Too many words and angry responses fuel more difficult behaviours.
  • We talk about the ‘crankies’ in Matilda’s brain having a rant but it is not Matilda. At least for us separating who she is, from what is beyond her control seems to help.
  • Let it go! This is hard but not impossible. We can have been defending ourselves from a range of flying missiles or be heart-sore from having a favourite object broken but within minutes that tidal wave passes and we try to continue as though it hadn’t happened. No blame, no shame, no hashing over, no analysis of what cannot be explained!
  • Grab hold of the good times with gusto. Family runs on the beach, cuddles reading books in bed, hunting Pokemon or building a treehouse. We all have our different ways to connect and share love. Don’t get me wrong. I stress. I panic. I have sleepless nights. I cry. But I try, try, try to focus on the sweet times.

EXERCISEGET THAT HEART RACING. 

  • Its simple. Just get out and move. Jiggle, swing, swim, jump – anything at all.
  • There is a lot of really good research that shows how exercise helps brain function and neuro-plasticity.
  • Initially Matilda had no stamina but we are slowly building up weeny levels of endurance.

EAT & SLEEP WELLNO BRAIN WILL HEAL WITHOUT  REST AND HEAPDS OF IT.

  • Watch for tired signs and act on them. Retreat home, send kids packing, reduce talking or cognitive load, avoid multitasking (huh!) and so on.
  • We avoid carbohydrates and sugar. If Matilda had a breakfast of just a croissant with jam, we would see a total break down 1 1/2 hours later.
  • Lots of protein – this can be really tricky but we keep on trying.
  • Lots of Vitamin C rich fruits and lots of veggies…even if the range is minimal.
  • Anything with lots of  HIDDEN veggies. I grate carrots, courgettes and pumpkin into my spaghetti  sauce  – Jamie Oliver’s version link here. and mash in veggies to thicken stews.

WATER DRINK LOTS OF IT.

  • This requires constantly carrying drink bottle and checking her intake. If we don’t check, we find she has only drunk about 500ml in a day from lots of sips but not big gulps!
  • An adult friend with a grain injury commented that his symptoms are much worse if he doesn’t drink enough.

STAY SOCIAL FEELING LOVED AND CONNECTED HELPS KIDS MAINTAIN RESILIENCE.

  • We have ask our friends for short play dates, early dinners and quick little adventures. It takes a bit of courage to stand out as being different in this way (most of her friends play longer, harder & faster) but if we pushed Matilda to stay up later or play longer, she would be unable to cope. Th consequences would knock-on like a falling line of dominos.
  • Play and laughter with friends overrides so many of the other yucky things and not just for her!

RELAXATION AND MINDFULNESS – LOTS OF RESEARCH BUT REALLY HARD TO DO!

  • Much as I would love to say we do relaxation, yoga or mindfulness with the kids, the truth is our attempts are sporadic and often a failure.
  • Matilda will do some kids yoga videos alone.
  • Our best attempts at deep breathing coincided with hips lifts against a wall….breath out on the way up and breath in on the way down…slowly.
  • The research in this area is strong. It really does help but for us at least it tricky to get happening in any sustainable way, despite some grate books and CDs 9Such as Sitting Still Like A Frog – link here)
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Relaxation and mindfulness for kids and adults!

So much to do that helps when all the ‘other stuff’ just can’t get done. My only other HOT TIP is that the parents should do the same. For me yoga is almost nothing about what my body looks like and soooooo much about what my head feels like. In hospital Matilda once said  ‘Yoga means a good day!’. She nailed it. I just have to creep out of bed in the dark to do it!

Neuroplasticity. – Parts 1,2 & 3.

I started Part 1 of this post some time ago but have decided to post it, as our progression with the word ‘neuroplasticity’ seems to reflect the changes of journey – from high levels of sensitivity & distress, to curiosity & investigation and now finding meaningful & sustainable home-rehab.

Neuroplasticity – Part 1 (some time ago…)

Ok, so I’m going to share a peculiarity about myself. I don’t think many people suffer from this as it takes a strange confluence of your professional and personal life. Here it is – when well-meaning people say the word ‘neuroplasticity’ to me I want to run a mile in the other direction screaming! My hubby doesn’t suffer from this disorder, as most human beings don’t, so let me explain.

As a speech pathologist I probably know more about neuroplasticity  than your average punter but far less than someone who has studied it or is researching in the field.  For many years I have had a mild obsession with popular neuroscience reading all of Dr Oliver Sack’s books and soaking up Norman Doidge’s  The brain That Changes Itself.  I was enthralled when listening to Barabra Arrowsmith-Young’s TED talk  about how she devised her own pathways for learning. Little did I know that one day this would not only be a ‘general concept’ that influenced my work and life but one specifically related to my own daughter’s brain and neural pathways.

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Matilda after her first EEG  – her brain was under attack from the HSV virus and seizures.

Don’t get me wrong. I love the findings that have supported this field. As a newly graduated speech pathologist we were led to believe that there were certain critical periods for brain development or learning and that different areas of the brain served specific functions.If anything messed with this order, you had a small window for regaining some skills but after that you were pretty stuffed. We now know that your behaviour (what you do) can alter the physiology of your brain – you can develop new neural pathways. Exciting stuff!webconnected-minds-connectedness-constructivist-learning-brain-plasticity-6-728

But there are just a few weany problems. Neuroplasticity doesn’t just take practice to develop new neural pathways, it takes ‘perfect practice’ and lots and lots of it. Many of the case studies are written about adults who have suffered a brain injury or children who have been born with some part of their brain missing or unusable. These cases are quite different from say Matilda.  Adults who have Acquired Brain Injury  (ACI) may have more self-motivation to slog through the hours of practice required to regain a skill and the child may naturally have pathways develop in an alternative area of the brain through the sheer number of attempts that they make at most developmental skills. Just think of how many times a child will happily fall to their bum as they learn to walk. Matilda now has strong visual cognitive skills and I do wonder if these ‘sprouted’ during her long non-verbal period out of being used through necessity.

Despite having been a speech pathologist for more than a decade, in which I have frequently worked with parents to use all manner of ways to maintain a home-practice schedule, being your own child’s therapist is always hard. We are beset with behavioural, motivational and fatigue issues that mean we are lucky to get three short sessions of therapy done most days. That means a possible 1 to 1 ½ hours out of twenty-four. These require tenacity, ingenuity, creativity and massive doses of neutral-toned perseverance and persuasive techniques from Marty and myself. Folks we may not even be touching the edges of the specificity or amount of treatment required for true neuroplasticity.

Neuroplasticity is not a universal panacea or magic pill that easily fixes what has been damaged. It is more like a guiding force that drives us to persist and try because we know that sometimes directed, purposeful, repetitive practice does impact our neurophysiology enough to change function. A slippery fish – Are we doing enough to make real change? Are we doing the right stuff?

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Lots of literacy, language and numeracy – every single day!

So when sympathetic friends and strangers mention ‘neuroplasticity’ I suspect my brain wants to scream “Its not a magic wand!”

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Anyone call for a fairy-neuro godmother?

But you know when I take off my ‘grumpy-pants goggles’ I hear something completely different. What I hear when people start to talk to me about how neuroplasticity can fix Matilda is HOPE and CONCERN. It is a way of ‘praying’ for us and sending us all their well wishes that everything will turn out O.K.

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Neuroplasticity = Hope & concern.

 

And I will take people’s love, concern, care, and HOPE any day of the week, wrapped up in whatever form they choose.

So thank you and keep the comments rolling.

Neuroplasticity – Part 2

After writing the above post, lets face it a bit of a rant, I decided that I had better look into it a bit more. What is actually out there for Matilda?  What is the evidence? How much does it all cost?

At the library we picked up Norman Doidge’s newer book The Brain’s Way of Healing and started seriously wondering if some of these techniques may provide Matilda with a greater platform for learning and living.  Neurofeedback particularly struck us as a therapy to be further investigated. It was wonderful having Marty reading the books too. Second hand information can so often lead to a lack of understanding, curiosity and enthusiasm but he is right in the thick of it when we are sitting on our see-saw balancing our options.

For the moment we are holding back on directly trying some ‘neuroplastic therapies’. Currently we are trying some ‘medical nutritional’ ideas with a naturopath and as a ‘researcher’ I know we need to try just one thing at a time  to see if it has a positive impact. However pondering Doidge’s Stages of Neuroplaticity (Neuroplastic Healing: Neurostimulation, Neuromodulation, and Neurorelaxation) has informed my thinking. But with a mind like a colander I will need to reread it a gazillion times.

Neuroplasticity – Part 3

We recently had a lovely visit from some relatives during school holidays.  They witnessed a spectacularly garbage parenting moment, where Matilda had a meltdown over doing a tutoring session and I didn’t handle it too well. Afterwards when we were talking and I was being comforted, he wondered if the ‘battle’ over therapy/tutoring was worth it in the balance. The vast majority of Matilda’s rages are around ‘doing stuff’ – taking medicine, drinking enough water, eating the right food or doing  what we call ‘brain growing’ stuff. Sounds fairly normal on paper, like your average 9 year old, but much more high octane.

In a 5 minute period she can go from screaming “I hate you mummy” to “Your the best mum in the world”. I have wondered many times about the cost to our relationship of being the main hand in her rehab process. It is enormously stressful for all of us to come up with original strategies to keep therapy/tutoring going and I often fail.

But that’s where knowing about ‘neuroplasticity’ really helps. It is the galant knight coming up at the rear because quite simply it informs us with a basic mantra – USE IT OR LOSE IT.

Without exercise, good food & water, cognitive work, language stimulation and social interaction, Matilda’s brain cells will not recover yet alone bloom. Without challenging her to work to her limit, the MRI will become her story, a big empty brain space, where not only  those cells don’t work but the ones they usually talk to decide to take a hike cause no one is coming to play. The exhausting and stressful nature of this work is beautiful described by Christine Bryden as she explains how she has combated her early onset dementia (click here for link)

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I hate doing Kumon!- Our daily struggle but Matilda is now reading simple sentences.

So we USE IT, STRETCH IT, FLEX IT and wrap it a leopard with stripey leg warmers. Balancing the battles versus the possibility of  skills to be gained, Marty and I have decided to keep those cells active!

We will ride on into the sunset on the white horse name Neuroplasticity and see just how far we can go…….

 

Medicine -A spoonful of sugar?

I know this may sound very naive but I didn’t really think about what the medications Matilda is taking may actually be ‘doing’ to her until this weekend. I am full of respect for the hospital team that have been working with her and switched off a bit. Maybe it was just too much information to soak up. Maybe it was a numbers thing. We had reduced the dose and number of her medications quite a  bit as we transitioned home from the hospital. So less equals ‘good’ or at least ‘everything’s oki doki’, right?  The words ‘side effects’ however are now ringing in my ears and I have slightly weakened friendship with her meds!

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Medicine paraphernalia in our hospital transition phase.

Matilda is on an anti-seizure medication and a B6 supplement to mitigate the effects of the ‘side effects’ of the anti-seizure medication. As well as Melatonin to help with sleep.

Lesson #1    Repeatedly check that you are giving the right meds at the right dose.

One day I went to the chemist and bought the B6 supplement at a lower dose. I thought I had doubled it to match what we usually gave her. I also naively underestimated the impact this supplement had, thinking ‘Ah its just a vitamin.’ WRONG!  We had about four weeks of daily meltdowns before I checked her dosage sheet and realised we were 50% down on her dose. Taking this back up coincided with a return to a less roller coaster life. I had made two mistakes here – one was not really understanding what the B6 was for and the other was thinking that I could hold all this information in my head without checking.

Lesson #2   Know the side effects of the medicine and monitor them.

I am now wondering if much of what I have felt was due to Matilda’s ‘acquired brain injury’ is in fact due to the side effects of her anti-seizure medication. She has a very high chance of having seizures if she is not on the medication but it comes a huge cost. The rages, otherwise know as ‘brain fireworks’ are scary and emotionally shake us all down. When I stuffed up her B6 we felt their full weight. Part of me feels as though I am poisoning her to keep her safe – not a great feeling as a parent.

Lesson #3 Really listen to your kids when they talk about changes to their bodies.

Matilda has real problems explaining pain. Is it pain, tingles, cramps? She will do things like scrunch up her hands because she can’t explain exactly what it feels like. A few weeks ago she started complaining of pain in her hands and feet. And after we increased her dose of B6 after a recent hospital review, she continued to complain but also said her eyes hurt. At this point I hit the internet and this set in chain a process of reviewing what she is taking, blood levels, possible toxicity etc.

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Constant monitoring feels a little like being Sherlock Holmes.

They say it takes a village to raise a kid. I feel like it takes a big team of people and a gazllion trillion neurones to look after Matilda. There is no sitting back and letting it all happen. It’s all about the little details.

Whilst relying our medical team and their advice, we have also begun they journey of pondering alternative or complementary therapies. But thats a whole other post folks.

Remember to keep your eye on the ball ya’ll!

 

 

 

The hard times and the good.

We have had a pretty ghastly week. As Matilda has adjusted to a new classroom, timetable and teacher (all wonderful), she has become increasingly agitated at home. This seems directly proportional to how fatigued or overwhelmed she is. In practical terms this means rages, slammed doors, risk-taking behaviours that lead to accidents, disturbed sleep and eating patterns and global distress within the family. When weighed down by having to strategise every minute of your day to avoid ‘making things worse’, fatigue and the crankies settle in quickly for the rest of us. These times of fear and distress can seem a million miles away from her or our public persona. I take my hat off to all home educators and carers of any kind.  Navigating our path through the hard times and the good has only just begun. Missteps happen often despite the best planning and lessons seem to be raining down on us like a waterfall.

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Roller coaster of hard times and good.

Despite having a research-loving brain I have only recently started accumulating more information about Encephalitis. In my travels around the web I came across a public update by a doctor about his wife’s Encephalitis (click here to watch). Very similar to Matilda’s.  The hairs on my arms stood up and my tummy churned, as my heart filled with empathy for him. The frustrations and difficulties that he was living with were so similar to our own but in an adult version. There is a silent, hidden pervasiveness to this type of brain injury – it has such a huge impact on the individual but the poor insight, memory issues, temperament changes stay hidden as though they are through the cupboard in Narnia.

People talk about respite but this is simply not a possibility for most people. I feel like I need to learn how to have ‘respite’ in my head. After the ‘hard times’ the feeling of tension lingers like a stale odour that is hard to shake. My mission statement is to try to learn how to be mindful. Be on alert when needed and let it go as soon as possible. So easy to say….

Watching an amazing Ted talk by BJ Miller (American palliative care and oncology doc) (click here to watch) I felt renewed inspiration to practice this hard task. He describes being in hospital after being badly burnt and losing three limbs. A nurse smuggled in a  snowball from the soft new snow falling in the outdoors that he could not go forth into.

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Reaching and holding ‘the good’.

The snow, the compassion of the nurse, being part of the world made him choose life. My husband is a far more bounce-back character. His resilience is way higher then mine. I struggle with the struggle.

Matilda often struggles with the frustration of clawing back the skills she has lost. The frustration of her lack of freedom and not understanding what the world or her body is telling her. She practices and is brave. And then she practices some more.

My ‘practice’ is to find that snowball every single day no matter how crappy it has been. There is always a hand held, the soft sound of her breath, the tenderness from Reuben and Marty as we hold each other tight in the storm. There is going to be no ‘man overboard’ in this family. We are each other’s life raft.

And when I can’t find my ‘snowball’ I have to learn to walk out of the room, kick something soft, breath deep breaths and keep going. Surprisingly a friend having a cry down the phone with me made me feel so much better. At first I just couldn’t understand why. And then it struck me, I didn’t feel alone in that ‘hard time’ moment. The range of colours was exposed and she held on tight with me. A blessing that night.

I wonder at my motivation in writing this. I feel disloyal to my brave Matilda but more than anything I want to be ‘simpatico’ with other families going through the same thing, like the doctor and his wife. After the acute period dies down little is said about how hard this can be and it is such a long, long adventure.

Snowballs and honesty. Really people!  Well thats all Ive got so far…

 

“Are we there yet?”

1044 Km in one day – now that’s a road trip. Last April Marty, Reuben and Matilda managed to drive from Canberra to Byron Bay in one day. We were going to cover a similar distance in order to arrive at our Christmas holiday destination but this time everything was different. Matilda’s ability to cope with change and fatigue has significantly altered this year. We marshalled our best planning skills and decided to tackle the journey over several days. Within half an hour of leaving our house we heard our first “Are we there yet?” – there were many, many more to come. This is what we learnt about long distance car travel and camping after HSV encephalitis.

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All prepared for our long, long road trip!
  • Take heaps more time. Matilda can cope quite well with about two hours in the van if everything is well planned. We can even stretch it out to two and half hours but by the time you are heading to three hours no amount of DVD’s or playing ‘Spotto’ (spotting yellow vehicles) will halt ‘meltdown mode’.
  • Sensory issues. Our van is well past its prime but we do have a camping fridge. Being able to provide cold drinks and keep the sun off her with curtains helped. Right at the end of our journey we had to bump over a dirt road. Matilda complained about the noise and I was really grateful for good quality over-ear headphones that could reduce it as she listened to music. She prefers adult ones, complaining that children’s sizes are too tight.
  • Food. We needed to plan well so that we had good quality food to eat and the fridge really helped. Chicken and grated carrot sandwiches. Chopped up pineapple and rockmelon. In the old days we would have consumed a fare quantity of chips and jelly snakes. Not only doesn’t she like them anymore (finding snack foods is tricky) but too much carbs and sugar just lead to a nightmare….they seem to hasten the ‘meltdown mode’.
  • ‘I need a wee.’ We could ignore this a little but we did have to stop far more often than we would have done in the previous years (and that was just me!)
  • Avoid the ‘Disaster Combo’. On the way back we missed the spot we had planned to take a break. We pushed on past our usual two and a half hour limit as it was raining and we were trying to find a sheltered road stop. Matilda needed a WEE and was BORED and was HUNGRY. Kaboom! We had pushed her a little too far and she became absolutely distraught. We all ended up in tears or close too it. We learnt the hard way that we should have backtracked as soon as we realised our stop was missed.
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A room with a view…before our neighbours arrived.

Our Christmas involved camping at a family farm with about 30 of our relatives.  There was hardly any electricity so no screens or phone charging, no internet/phone signal and no indoor plumbing available to guests!  Yep, it was pretty rustic but absolutely wonderful. With folks of all ages from under a year to over sixty it wasn’t a Christmas that you could describe as ‘unexciting’ or ‘quiet’ (most of the time).

Matilda coped really well, trudging down to the pit toilet, dodging flies and ferocious ants, and bathing (a swim) in the dam.  Temperatures were hot one minute and chilly the next. Marty and I had planned to bail the minute she showed us that she couldn’t cope but with a little help, she was an absolute Trojan.

  • Sleep. The importance of sleep can just not be over stated. We tried as hard as we could to keep her sleep cycles quite close to the way they are at home. Frankly she was stuffed most of the time and generally went to bed before all of her younger cousins. She continued to have ‘quiet, non-talking time’ in the middle of the day (no matter what everyone else was up to).
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I think I really need to sleep….NOW!
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Is it morning?
  • Linking to home/normality. Matilda had a C.D player and she listened to story C.D’s a lot of the time when she wanted ‘out’ from the noise, at sleep times and to create an ‘sound environment’ that linked her to home. Favourites are by Roald Dahl-all of them,  Enid Blyton-The Faraway Tree and Louisa May Alcott-Little Women. We use a C.D player instead of an MP3/Ipod because at that time she couldn’t read  much and  C.D’s were easier to navigate which meant indepenendence.
  • Support. Our fellow campers (Marty’s family) all knew what was going on for Matilda and were wonderfully supportive. Even Santa helped out by arriving earlier than usual on Christmas Eve. Based on her cartwheeling and ‘yoga-tree-pose’ jumping off the dam jetty (with life-jacket on!), it may have been confusing for some as to what her actual difficulties are. One person commented that it was only when she spent some time alone with Matilda that she realised how she had changed.

So really why not just stay at home. We did have meltdowns and a few bungles. It really did require more thoughtful planning and making strategic decisions, than any travels in recent years. Well you know, I tend towards being an over-protective mum, which has become a great deal stronger after our Encephalitis experience but I WOULD DO IT ALL AGAIN TOMORROW. 

You can only really fly when you get out of your cage. Matilda and maybe all of our family came back more resilient. We came back with a little bit more elasticity in our whole system. Like a good sourdough, we have risen to the occasion! We were a little flattened and lacking in airiness, and now we have a bit more bounce.

We did not celebrate New Years Eve in 2015 as it did not feel celebration worthy but I’m pretty certain that we are gonna party big time by the end of 2016!

Looking forward to a great year ya’ll

Opto-much-tism

The kids and I have just finished reading a wonderful five book series called The Incorrigibles of Ashton Place by Maryrose Wood. We read engrossed morning and night, feeling saddened when the last page was turned, as with all great books. The lead character Penelope Lumley often questions whether her actions or views are ‘optomuchtic’ meaning overly optimistic or falsely so.

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A behavioural tempest rolled in last night!

Last night Matilda had her biggest meltdown since the horrible nights at rehab, when neurological agitation had her screaming and crying at night, unable to be comforted or knowing why she felt so terrible. As ‘the storm’ rolled over Marty, Reuben and I we had to bend and flex to her might rather than fight her. Both Reuben ( her 11 year old brother) and I have spoken to her and it appears she remembers little of what happened.

After she was asleep in bed, I wondered aloud to Marty if optimism had lest us down, could you be ‘opto-much-tic’.  Had we conned ourselves that all was well when in reality we have a daughter with a fairly major and recently acquired brain injury. Could all this positivism prevent us from settling into the reality of our ‘now’ and learning to adjust to what is ‘real’?  In the most blatant form I mean that I have avoided reading much about the behavioural issues associated with post-encephalitis thinking we may have dodged that bullet. It turns out that we haven’t.

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A new day dawned  – our local Watego’s beach.

Then today a new day dawned. Matilda had no recollection of what had happened and the water was clear and warm under my surfboard. The jury in my brain is out. I simply do not know what serves me better – optimism or a healthy dose of scepticism with a sprinkling of grief & reality.

One thing I strongly feel is that to hide the ‘dark side’ from my friends and family is to deny them a real chance to understand what we are experiencing. My neighbours compassion having listened to ‘the storm’ was greatly appreciated. They heard, they knew, they cared but not in a bad way.

 

‘Sharing is caring’ as the kids say.

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!

 

 

Fatigue, food and fads.

I know that it seems crazy to lump these things all together but they appear to be intimately connected in Matilda’s world. When the kids were babies we would occasionally smugly congratulate ourselves that we had for example mastered ‘sleep routines’ only to be proven wrong the next day! Learning about what helps Matilda to stay happy and function smoothly is a little the same.

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The knitting fad

Fatigue – Cognitive fatigue is so much more than ‘being tired’

Without a doubt one of the biggest issues we are dealing with for Matilda is fatigue. She needs frequent breaks throughout the day for ‘no talking time’ rest and good doses of exercise between her two hours of school, therapy sessions and home practice. Communication and learning new language wipes her out. It is almost as if you can see dark rings forming under her eyes the longer she continues in a ‘chatty environment’ or language session. Suddenly her eyes start blinking, her mouth becomes full of ‘cotton wool’ with her words and sounds being jumbled. If we are at home she will ask to ‘watch’ (kids TV) or if out and about she will repeat her desire to leave like a cracked record. Distraction works for a short time but soon she will implode, crawling into a ball, crying and unable to communicate – a place that is distressing to all of us and we work very hard to avoid.

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Playing Piggy-in-the-middle for an exercise session.

Structure to our day and knowledge of tired signs seem to be our best allies. We watch closely for signs that she is finding situations tiring and head for the hills. I remember once thinking I was going to need to leave a café before the food came. We go to quieter places, stay shorter times, don’t try to do so many jobs in one trip to town and go home when she asks to leave. Dinner is almost always on the table by 6 and bed at 7 p.m. As summer rolls in and the nights are lighter with her friends still playing out in the street, this is becoming increasingly tricky but there is no choice and for now we follow her lead.

Food – Oh me oh my!

Marty and I to a large extent were bought up in a ‘you eat what your given’ type world. We have always tried to accommodate our kid’s preferences but are pretty strict about healthy eating. Matilda’s food fads currently last for a while and then she will no longer eat the item…pears, grated beetroot, cake, chocolate, most biscuits…to name a few, have all come and gone never to be consumed again! The refrain ‘I don’t eat that anymore’ still startles me but no amount of coercion or discipline seems to alter this internal programming!

Last week we had a few really explosive and distressing evenings and it took us a few days to work out that she was HUNGRY. She was complaining of feeling sick and having a sore tummy. So now we are strict…a protein based afternoon tea is a must….peanut butter toast, sausage sandwich, sushi. We have even bought a protein powder to add to fruit smoothies as a back up. It seems to work.

Regular food and water. Basic chemistry at work but we cannot rely on her to understand what her body needs…yet.

Fad and favourites

Matilda often asks “Do I like that?” or other versions such as “Do you put red sauce (tomato) on this?” It seems that she has ‘forgotten’ a great deal about her former preferences and her ‘rules’ for how things went together especially with food.

It probably shouldn’t but it cracks me up. Knowing full well that she may have loathed something before, I will neutrally remark, “I don’t know, why don’t you try it?” This has led to some wonderful new experiences such as trying sardines mixed with parsley, mint and lemon juice, from which she would have previously run a mile but on the weekend she decided she loved! Go figure.

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Prior to “I don’t eat cake.”

Toys, clothes, shows, games…all go in favour and then are right royally dumped. Sometimes this is because they prove too tricky for her current skills but other times there appears to be no reason for the ‘break up’. Maybe part of her frenetic moving from one thing to another. Sorry mate, you’re dropped!

Our patience is often tested. We end up with lots of half completed craft and a fridge full of beetroot but we go with the flow because frankly there is no alternative.