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…….