Here we go again…

It’s gently raining outside and more than anything I don’t want to think about hospitals or what has happened to us over the past few months. A deep well of hot anxiety and fear starts to rise as I write this and prepare to return to Matilda in hospital today. But so many of our friends near and far would like to know what is happening, so here goes…may my tea be strong & hot enough to get me through.

Despite all that Matilda had lost and had to bravely face since she has HSV encephalitis in June 2015, we had started to muddle our way through.

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The best ‘natural’ surfer in the family!

Matilda still only attended school for three hours a day but her teacher, aide and I felt we were getting on top of a good program. We had applied for funding for some assertive technology to help compensate for her poor literacy skills but we were happy that progress, even though very slow was still happening.

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Matilda had started to do Craft-a-noons – an after school activity with mates.

Then in March this year (2017) she started to have more seizures and different kinds. We wondered if it was just that it was the end for the first term and all the kids were a bit stuffed. The paediatrician & neurologist increased her medication and decided that we would continue with our plan to go on a road trip to see family down south….all in very short hops and well orchestrated to help Matilda cope. Marty and I have always wanted to fill our kids lives with as many positive experiences as we can to balance out some of the really tough times they have been through recently.

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Saying hello to new cousin Felix alias ‘Chuckles’

But it all went a little pear shaped (too many seizures) and we found ourselves in a bit of a mad dash to get her back north so that she could be admitted to the big children’s hospital in Brisbane where the team new her well. At this point we thought the major crisis was dealing with her uncontrolled seizures. Her EEG showed almost constant seizure activity and they increased the number and dose of most of her medications. Matilda’s thinking, language and levels of activity had dramatically reduced and they also gave her steroids to try to reduce any inflammation in her brain and perk her up. She also had an MRI to make sure that her scar hadn’t altered within her brain and a lumber puncture to test for antibodies for other types of auto-immune encephalitis, which at the time they thought was unlikely.

You know the news isn’t good when two neurologists arrive at the bedside at 7 pm as you are reading your daughter to sleep and want to change her medication and ‘have a chat’. They had found then antibodies in Matilda’s spinal fluid for Anti-NMDA receptor encephalitis. The easiest way for me to think of this is a bit like severe Tonsilitis, when the body fights itself so hard that it makes itself sicker. They started Matilda on first line immunotherapy and more steroids. Thats when the rages started and they wondered if it was a reaction to the steroids or ‘road-rage’ as the nurses call it.

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Matilda became deeply unhappy with rapid mood swings.

What we didn’t really understand was the psychological changes that the ‘antibodies’ can bring about – screaming, aggression, violent outbursts, psychosis, paranoia and obsessive thinking. We tried to bring Matilda home last weekend and found these rages meant that she was very unsafe. Anything and everything could be a missile and she seemed incredibly fast and strong. Our neighbours and friends stood by us but our small army was not enough. As it was no longer safe to travel in the car with Matilda, her neurologist in Brisbane arranged an across state border home to hospital ambulance trip. It was only when the ambos arrived and they explained that they had never heard of such a thing that we started to realise just how concerned her team was.

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Matilda sedated  in the ambo on dash back to Brisbane.

Even Matilda’s paediatrician had never heard of not having to go through a local hospital to be transferred. Matilda raged at retuning to hospital and in the end had to be sedated for the 2 hours journey. When we arrived  back at LCCH in Brisbane it became apparent how concerned they were. We have a ‘assistant in nursing’ in our room with us 24/7. The room was cleared of all possible projectiles.  Over the next few days the heads of neurology, psychiatry and rhuematology all conferred over her case. She is about to start infusions (Rituximab) to wipe out her B cells and has been stabilised a great deal by careful psychiatric medication. She has been obsessed with an American Girl doll and the staff have been lovely, helping us to hunt all over the hospital in case she is hiding there! Yesterday she had a small seizure as they had reduced some of her anti epileptic drugs to see if they were impacting on her mood.

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One of the wonderful AINs who have helped us all day & night.

And here I run out of words. It will soon be Matilda’s 11th birthday and the anniversary of her contracting HSV encephalitis. I cannot explain how distressing it is that she will most likely be in hospital for this birthday and that we all feel like we have gone back in time by two years. Really it is worse this time. Neither Marty nor I can work as we need to change over in the hospital every few days as it is so  physically and emotionally tiring.  We do not know how long we will be in hospital for this time but after our last ‘not so brilliant’ attempt at coming home, I suspect we won’t be coming home any time soon.

We are blessed with people near and far who have generously supported us. In an era where so many people just seem to be out for themselves, it makes such a huge difference to have people around you acting out of compassion and nurturing. Even with all those hands and minds holding us up, it feels like a lonely and distressing bubble to be in. The ‘world’ continues unnoticed, as our lives are focused on the very small microcosm of a hospital room and home. Even when we have a day at home we are preparing, food, clothes and games for our return. I want to believe that everything will turn out OK in the end. I want to believe that they will kick the antibodies up the arse. I want to beleive that one day our lives will resemble ‘normal’ at least a bit.  But I also know that if I let my feelings out for second, I feel like I am being repeatedly dumped by a wave and it is getting harder and harder to get to the surface to fill my lungs with air……………

We will try our hardest to keep you all posted . Big hugs y’all.

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!

 

 

 

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!

Seizures

Seizures make me cry. Since early May Matilda has developed seizures. In the scheme of things ‘seizure-ish’, Matilda’s would currently be considered very mild. Many families are dealing with way more than we are . But despite my best efforts to convince myself otherwise, seizures change everything – subtle shifts through to absolute fault lines.

 

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Luckily she has learnt how to swallow tablets & capsules!

Seizures mean that the small amount of freedom Matilda had won back over the past year has been eroded. We hang closer to her as she is less stable on her feet and ‘shadow’ her when she is with her friends in case she has a seizure.

Seizures mean that we have to fill our little girl with medication, that has three pages of side effects I wouldn’t wish on my worst enemy. Most of the time we don’t know what is impacting on things like her speech – is it the seizures, the medication, fatigue? And you know what, neither do the doctors.

Seizures mean that at times she is so tired she can hardly function and our plans for slightly longer times at school may hit rocky ground (or at least how she is at home afterwards). Pushing dinner times out a little later or socialising with friends in the evening is becoming harder not easier (on the bad days).

Seizures mean that normal 10 year old girl activities need to be strategically managed – sleep overs, play dates and parties. Shorter, with mum doing the emergency medication talk or hovering in the background, leaving before all the others, only with one friend – never quite free.

Seizures mean lots more doctors appointments and not necessarily more solutions. We try to arrange ways that Matilda doesn’t hear the chat or discussion over outcomes/side effects/recent deterioration but there are times that this is hard to avoid.

Seizures mean  that Matilda has mentioned hating her body or being broken more often. She is tough and this only happens when she is at her absolute low-battery setting but on top of normal early-puberty issues, it strangles my heart.

Seizures mean that her 12 year old brother Reuben knows all about what to do in an emergency situation and that we have a sign on the fridge for what to say when you call for an ambulance.

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Getting ready for a recent EEG

Seizures mean that we check how far it is to the nearest hospital and if they have a 24 emergency department before we go away. Our car recovery policy will get upgraded too in the event of a breakdown!

Seizures mean more talks with the teachers at her school and kids in her class. They have all proven that the more they know, the more supportive that can be.

Seizures mean that I have no way to forget the horrible night when she was first ill and a seizure almost took her. I think often, almost daily of the doctor at her head, keeping her airways open, telling me to keep talking to her, that she could hear me, as she shook on the bed. My tendency to overprotect her has gone through the roof and I am constantly fighting my inner urge to check on her, hold her hand, not let her go too far…….

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Mum stands by trying to act cool but freaking out!

 BUT seizures mean we are still here. We are still in the game and prepared to do what ever it takes. This may be a temporary reality or for the rest of our lives. There are chances that it could become significantly worse or possibly better. Either way as a family and as a community we will roll with it, breath into it. Sadness and despair tap on my door. My yoga teacher read a beautiful quote from the poet/writer David Whyte from Consolations (link here)

Despair turns to depression and abstraction when we try to make it stay beyond its appointed season and start to shape our identity around its frozen disappointments. But despair can only stay beyond its appointed time through the forced artificiality of created distance, by abstracting ourselves from bodily feeling, by trapping ourselves in the disappointed mind, by convincing ourselves that the seasons have stopped and can never turn again, and perhaps, most simply and importantly, by refusing to let the body breathe by its self, fully and deeply. Despair is kept alive by freezing our sense of time and the rhythms of time; when we no longer feel imprisoned by time, and when the season is allowed to turn, despair cannot survive.

Breath, hope, step forward.

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…..

Integrative medicine – investigating alternatives.

Alternative, complementary or integrative medicine -to be honest I am not entirely sure if they are all the same thing or not. Different labels from different decades? Where I live we are very fond of such things whether it be chiropractic, osteopathy, kinesiology or a bit of a drumming circle to name a few. I have to lay my cards out and say that as a speech pathologist with a passion for research, I am a tad wary of some things that are on offer. However whilst I love a good bit of juicy research to assert that a treatment is both effective and efficacious, I can also admit that a lot of what I do clinically would fall more into ‘know-how’ or ‘clinical expertise’ or ‘that’s how my granny showed me.’ So with Matilda, my child who has an acquired brain injury following HSV encephalitis, the system has flogged itself to keep her alive but now seems a little lost. Conventional medicine feels slightly balanced between ‘we are managing her drugs’ and a shoulder shrug that insinuates ‘Huh sorry but ya kid has a brain injury and that’s just the way it is. Nothing more we can do here. Please step away from the counter.’. The problem here is that we don’t want to just sit back on our bums and wait to see what ‘natural recovery’ will bring us – something, not much or a fair bit? We want to be proactive in helping her be in the best position she can for learning and recovery. That may be boosting her immune system, feeding her brain food or doing more exercise, and this is where ‘not medicine’ medicine may really come into its own.

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SBS program discussing integrative medicine – “There is often an assumption that anything that is not ‘mainstream’ cannot have an evidence-base. But not knowing about or reading the evidence does not mean that it does not exist.” (Link here)

Professionally I have a little check list that I like parents to use if they embark on any intervention. It is particularly helpful if you are about to embark on a journey into the unknown…water, compass, bug spray, clean undies….Nicole’s Checklist!

1. DO NO HARM

I cannot stress this one enough and it is a little bit more complicated than it looks. To the best of your ability try to ensure that what you are going to try will not be physically or psychologically damaging.

  • Check that any supplements do not clash with medication e.g even simple food based  supplements can clash with cardiac or seizure medication for example.
  • Over-intervention. I have worked with a few kids who have been to see a gazzillion therapists/practioners and they can be quite emotionally unsettled by it. All these people can really add to a picture of ‘something is really wrong with me.’ So choose wisely.
  • Fatigue. Matilda has already had a gutful of appointments and hates listening to the case history part. We now take head phones with music or a DVD and if she isn’t being directly spoken to she can ‘tune out’.

2. QUALIFICATIONS AND MATCH

Ask what the person’s qualifications are. There is a big difference between a 3 day course and 30 years clinical experience. Anybody who is avoidant of telling you about their training or experience may be best avoided!

Follow your gut instinct. Just because a mate has recommended someone, doesn’t mean that they are right for you. Listen to your inner-voice if it says NO (or YES).

3. DON’T BE A GUINEA PIG

In most situations it might be best to avoid someone who has no clinical experience with the age group or type of issue your are seeking help with. Comments like ‘I don’t normally work with kids but I am willing to have a go!’ should probably ring alarm bells.

However sometimes a practitioner may be very open about their lack of experience in your particular area but very up front about how they could manage that – ‘I speak with my mentor every week.’ ‘I have read 10 journal articles, been to 2 workshops and am in regular contact via Skype with the authors’. Being ‘open’ in this way allows you to make informed decisions.

Another great way of checking up how you feel about a practitioner is if they have testimonials from other clients or clients who have volunteered to talk with prospective clients. In my private practice I have a couple of parents that have volunteered to talk with parents considering seeing me. I have no part of these phone calls and I think that parents speaking with parents is a great way for them to weigh up the pros and cons.

4. TIME FRAMES AND EXPECTATIONS.

It may be important to double check a few things with the practitioner. Endless sessions may be expensive and not really show any clear change. Having a sense of exactly what to expect is important.

  • What exactly do you think we can expect to happen? How will we know if the treatment has worked or not?
  • How many sessions is it likely to take?
  • If I start taking a supplement or doing regime, how long will I need to continue? What happens when I stop?
  • What are the alternatives if it doesn’t work?

Sometimes in my practice  I may say things like…’The research and my clinical experience says that usually children under 6 will reach the end of Stage 1 by 16 sessions. As Bobby is now 9 and also has a sensory processing disorder, this may take longer.’ So in some situations I cant actually say a definite program time but I can let a parent know what I do and don’t know, how we may have to vary from the norm or what we know from research. This lets them make an informed choice.

5. WRITE IT DOWN

It doesn’t matter what type of medical or intervention process you are embarking on, it is always a good idea to keep notes. These appointments can be bamboozling and they are there for your benefit. This is especially true of team meetings (mutli-disciplinary). It is soooo easy to forget to ask the crucial question you had or to later completely forget what they said!

  • write a list of things you want the practitioner to know (a parent/self report) and questions that you have.
  • before you leave, check that you have asked them. I once went into a multi-disciplinary meeting with just two important questions. Being tired and overwhelmed I failed to get my diary out of my bag and left without either question being asked or answered!
  • write down what they say. You think you won’t but you will forget!
  • don’t feel intimidated about going in prepared. Like I said all of these meetings are for your benefit.
  • Crochet through big scary meetings – scratch that! Unless your a yarn-nut like me who focuses better whilst armed with crochet!
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The blanket I crocheted for Matilda whilst we were in hospital – the wool was donated by friends and family. It went to most meetings and therapy sessions. Thanks to all of your lovely wool it is the size of a single bedspread!

6. FIND THE BEST YOU CAN

Within the bounds of reason, location and finances, try to find the most experienced person you can. The rarer the issue the more that this may be necessary. If you can find someone with a passion, special interest or clinical speciality in the area that you are seeking help with…kaboom you hit the jackpot.

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My first attempt at a gluten free cinnamon loaf – bit of a knee jerk reaction to reading The Grain Brain

7. MONITOR CHANGE

Recently Matilda started having crania-sacral session but unfortunately we also were adjusting the B6 she takes to mitigate the behavioural symptoms she has as side effects of the anti-seizure medication. The result of changing to things at once is that we don’t have a clear picture of what caused any changes to her behaviour.

  • Try to only alter one thing at a time to see if anything happens.
  • Watch out for small signs. These may seem quite unmeasurable like ‘We all feel happier.’ or  ‘Getting ready for school felt like before we went to hospital.’ or more smiles. You may be able to ‘measure it – we haven’t had a meltdown for the past 4 days.
  • Keep a diary of any changes so that your practitioner can help you assess how it is going – as a aid before it is so easy to forget details once you are in a session.

So we are now looking a wide range of options for Matilda – yoga and breathing exercises, cranio-sacral/ connective tissue therapy, neuro-feedback, nutritional medicine. Some we will embrace and some won’t get off the floor. Sometimes we will have enough answers to feel confident and at other times we will be flying by the seat of our pants.

Its really hard to just accept ‘the shrug’. So we will seek ‘outside the box’ whilst swathed in a banner saying ‘Do no harm!’.

Night John-boy, night screeching Koala’s, night weird-sounding owl, night ya’ll.

 

 

Get me outta here!

Cabin fever is the new bug laying waste to rehabees in our household. I think both Matilda and I are going slightly bonkers from how much time we spend at home and with each other. When refusal to do any therapy activities seemed to be escalating I decided it was time to ‘GET OUTTA HERE!’. We have done her tutoring, speech or OT exercises in the car outside the petshop, at the beach in a tree, at the pool and at numerous cafes to name but a few. Initially we had a bag with various ‘secret locations’ from which she would have to select at random. We are now in a period of negotiation over locations. Even therapy at home tends to involve movement and getting away from a desk. In this way we are stretching  out her ability to stick with it.

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Kumon tutoring at The Farm

Noise can be a factor and distraction but Matilda is pretty good at letting me know if an environment is too noisy. We have more problems if we try to do it before a surf session and she is itching to get into the water.

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And then there are the REWARDS!

Today we invented a type of ‘hide and seek’ mixed with sort-of-orienteering.  We have been trying to extend her vocabulary for household items. The kids had a list of clues about household items around the house.  They had to..

1. Read the clue

2. Find the item and a letter attached to the item.

3. Matilda had to draw the item.

4. Matilda had to say the letter name, letter sound and the name of the item.

5. Other kids had to put the item named into a sentence.

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Is it a tap or sink?

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The place the postman goes or a mailbox?

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More repetition – That’s me doing ‘tap’ but could be SPIDER!

I love a bucket load of repetition and after a fruit break we had a final activity today. Matilda had read a book about senses at school so I wanted at an activity that relied on TOUCH. I hung items that she had been having problems naming on a broom handle. The kids took turns to feel and guess what they were. Reuben as the big kid had to add what they were made off and put them into a sentence.

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We had used a tape measure last week and it was a tricky one to remember but she did!
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Is Reuben doing yoga?

I remember watching an Australian early-learning kids show called Playschool and thinking ‘Wow they can make anything with a box and masking tape!’. I think most activities for language learning don’t last too long and have to be pretty ‘down and dirty’. Its important to not spend too much time in the preparation or you can be pretty disappointed when they flop or only last a nano second.

I try to follow a rule that kids need to learn to be still and focused but they also need to move and talk at the same time. With Matilda, changing the scenery, including mates or adding action definitely keeps the wheels of therapy turning.

Have fun ya’ll.

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!

 

 

 

Getting down in the kitchen!

You know after 6 months of doing language, literacy and numeracy sessions with mum at home, things can get a little dry! In the rush and behavioural management stress I often forget the basics – make something and have fun! So recently Matilda and I made mini corn muffins for her language practice. (Click here for recipe – ours had no chives and we used wholemeal flour). Simple recipes make great sequencing and recall tasks. Matilda finds this extremely hard as she has lots of difficulties with working memory.

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Clipboard pictures and words for the recipe.

Personally I feel the secret to recalling sequences from hand drawn pictures is to make sure you draw them with your child, at the time you are doing the activity (not before) and repeat several times what it means.

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Matilda drew the main idea and I wrote key simple words.

Its amazing how tricky she finds pouring, measuring, lifting even though her right hand now looks pretty normal to most people. She masks this so well by looking disinterested when really its because the actually precise movement is tricky.

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I love that cooking covers language, maths and wee bit of science too!

So once the muffins are safely in the oven, we did a recall task with the sheet we had drawn/written. This was really pretty tricky and lots of choices were needed to support her vocabulary….Did we put the milk into a…jug or bowl?

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Lets not forget the washing up!

I am a huge fan of mind-mapping for children for tasks like this but the waters here are often muddied by over overcomplication.

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This just makes my head hurt!

If we use the same format for a mind map each time, the visual organisational tool is likely to be ‘fixed’ in a child’s mind. They can use it themselves to plan and sort. As they continue through life and education, they can add on extra branches and sub-sets as needed but the CORE FORMAT remains the same. Otherwise they just become confused between different designs that never become functionally useful.

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Now this is more like what I use – always starting at the top left corner.

So Matilda and I will move towards using simple mind-maps for these kinds of tasks but for no its time to plan our next tasty snack.

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Well I may have eaten a few too many of these!

 

 

 

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…