‘I have a disabled daughter’

You know in the old days when we used to write letter or even long emails to each other (pre-long texting conversations), we would often start with an apology – ‘Sorry its been so long…’ or ‘This is my fourth attempt to write.’ Well, I feel a little like that about writing this blog – its been ages, a year in fact! But the words just haven’t been there. The energy or motivation to write about our experiences were simply zapped by, well coping with the experiences themselves! But now the words have came back. Just like an old friend, wiping the dust off her dirty boots on the door mat, as she steps over the hearth and yelling ‘Cooee’ (as my Gran used to do). Be warned, after a year of no finger tapping, this ain’t gonna be a short post!

Tilly, Reuben and Rosa (assistance dog) having a cuddle at the Smart Pups training day.

The past 12 months, well the past three years, have been bloody tricky for my family. From the first moments of Matilda (Tilly) contracting Herpes Simplex Virus encephalitis, our lives inevitably altered in uncontrollable and at times devastating ways, unfurling one event after another for us all to navigate. Here is a snapshot:

• In 2015 HSV encephalitis followed by major brain injury, loss of almost all skills and 3 1/2 months in hospital (several hours drive from home).
• Gradual increasing of seizure number and severity.
• Contracting Anti-NMDA receptor encephalitis in 2017, probably caused by Tilly’s brain not liking the scar from her previous event, resulting in a 4 1/2 months in hospital and a year of extremely challenging behaviour.
• Life threatening seizures together with a diagnosis of Lennox-Gastaut Syndrome (chronic seizure activity) in early 2018.
• Moving from one tablet of anti-epileptic medication morning and night to handfuls, with her neurosciences team trying many different combinations. These can take up to an hour on a bad day to consume.
• Starting taking CBD (Cannabinoidal) oil as part of a compassionate scheme.
• Trialling the Ketogenic diet which resulted in a psycho mummy, after cooking for hours each day only to have the food rejected.
• Transitioning to a special needs unit for high school next year, in a town 20 km or so away, rather than the local high school around the corner where her friends and brother will attend.
• Tilly gradually becoming more disabled – the time to understand or express an idea getting longer and longer.
• Our climbing, swinging, cartwheeling, swimming, surfing and generally risk-taking daughter,  living a life almost devoid of risk or action.
• Tilly being consumed by fatigue that is like concrete – making her immobile, unable to speak or eat or play or choose or sometimes even think or feel.
• Tackling the paperwork of the new National Disability Insurance scheme (NDIS), designed to support individuals with disabilities (which they do to some extent) whilst simultaneously causing extreme trauma for families by the uniformed, rigid and policy-over-client-centred nature of their systems.
• Recently having a Vagus Nerve Stimulator (VNS) implanted in Tilly’s chest to hopefully help reduce her seizures or their severity (similar to  large pace maker implanted under a general anaesthetic)
• Together with Tilly we have spent ONE THIRD of this year in hospital (again!).
• Meeting the class to seizure response dogs at Smart Pups, in preparation for matching with our assistance dog.
• As working parents we have used up every ounce of our leave and I have been only able to work 1 day a week. I love my job as a speech pathologist but currently Tilly’s variable condition and frequent hospital visits make getting back to work an almost insurmountable difficulty.
• One parent always sleeps in Tilly’s room overnight due to seizures or needing the bathroom, despite alert mats and video monitors (which just don’t detect her full range of seizures)….I miss my big firm bed (well, maybe her dad too).
• Holding Tilly’s hand at all times (metaphorically and literally) to prevent major injury as she is currently having roughly five ‘drop’ seizures a day. These come with no warning and she just suddenly collapses. You can imagine how this feels for a 12 year old teen
• Everything is on ‘Tilly Time’ – how long it takes to get out of the house, where we can go and how long we can stay. Even early family dinners with friends are tricky as Tilly’s brain injury makes juggling the noise and her tiredness super hard.
• And the worst is just watching our precious daughter have such a bloody hard time of it, day in and day out. Tiny things like using a knife and fork or saying her BFF’s name, can be impossible on a bad day and plain hard work on a good day

Now I don’t want to gripe, but these things were not on our bucket list. They were not part of our  family goals, aspirations or how we invisaged our lives as parents. Some good things have come from this ordeal but I would never wish it on anyone.

Tilly just weeks before she contracted HSV encephalitis

Recovery

When Matilda was first ill, in those early months at the children’s hospital, they said that due to the size of her scar and subsequent brain injury, that she was at risk of having profound learning difficulties and possibly only reaching a kindergarten level of education. It’s not that I blew them off but I pretty strong faith that if anyone could beat the odds, then we could. You know, I felt we would have to adjust some of our aspirations for Tilly but I still thought she would become an independent reader, that she may work, that she may live independently or that she would maintain her friendships. I had an Amy Cuddy  (click name for link to Ted talk) type recovery story in my mind – well scaled down to our situation.

Tilly in 2016 between encephalitis bouts – different but seizure free and moving forward.

Every book on neuro-plasticity had adults working day and night to improve and regain their skills. I presumed through shear bloody will power and hard work,  that her dad, brother and I would be able to create a ‘recovery’. Maybe not back to where she had been but a ‘recovery’ nonetheless. What I didn’t expect was relentless, slow, plodding deterioration. I didn’t foresee our lives circling into smaller and smaller loops until we were in a vortex of time and space, with ‘brain injury’ as the seemingly benign but slightly nasty overlord. I did not expect to have to say to shop assistants ‘I have a disabled daughter’ when they looked at me oddly for walking around holding her hand or as she drops to the floor for no apparent (to them) reason. There is no recovery – only managing with what we have each day.

Tilly in 2018 learning to  identifying as a person with disability and asserting her rights!

Learning to understand

Many people think that I must consume humungous amounts of information about the various stages of Tilly’s condition. The truth is I do not. It’s a bit like a decision I made a few years ago not to watch the evening news. I simple couldn’t deal with gratuitous violence or ‘grief porn’ as one writer called it. Images would enter my system and remain there, disturbing me. Similarly, most forums, journal articles, books and so forth, do little more than drag me down. They weigh heavily on my already sunken shoulders and add to the ‘Grand Canyon’ that was once a simple frown between my eyes. In the wee few hours when I am not being with or ‘for’ Tilly, I need to settle my mind with ‘fluff’ or at least other, less distressing stuff.

This policy of ‘don’t go there’, was however thrown to the water with a book entitled ‘Handywoman’ by a knitter, writer and designer from Scotland named Kate Davies  (click on name to link to TED talk).The book reflects on her experiences of a brain injury following a stroke at 36. Maybe it’s because I love knitting and crocheting. Maybe it’s because many of the people whom have held my hand are ‘yarn’ people. In describing the productive ways that she was ‘gradually adapting to the reduced pace of my post-stroke life’, I felt that somebody was putting into words what Matilda couldn’t say to me and also what my family had experienced as a unit. Also from those souls who have actively stepped towards us with support rather than turned away, unable to decide what to say or do.

Kate Davies and her book Handywoman

Look, at this point I could get a bit ‘fan’ driven and rave about her descriptions of all encompassing fatigue, how design for the ‘disabled’ minority is ultimately ‘design for all’ but what struck me most was her views on making and points for what had helped her, so I will stop dribbling and carry on!

Living with a brain injury and making

Matilda’s dad and I have been together for 15 years but we had an unusual ‘falling in love’ journey. I have loved him for ages but until recently thought we had almost nothing in common. But this was really a case of not seeing the forest for the trees. Since Tilly became ill, we are statistically part of the lucky few, in the wider community, and even luckier fewer in the community of parents with children who are seriously ill or disabled, who have stayed together and have developed a stronger relationship. And I seriously think this may be because we are MAKERS.

Spoon carved by dad and socks knitted by mum – a makers gotta make!

I knit, crochet, weave, carve wood and sew. He does stuff with electrical things I don’t understand, builds everything from decks to sheds to furniture, designs, resembles and crashes RC planes with our son and carves. Often a quiet settles over our house as different people tinker. I had always put the benefits of this process down ‘MEDITATION IN ACTION’ but Kate Davies eloquently describes how making something changes your surroundings and that each item or stitch or curl of wood enables you to feel as though you are moving forward, even in weeks of chronic fatigue, when faced with another crappy diagnosis and when Tilly’s skills feel like they are going down the plug hole. Making helps you to breath and stay engaged in a life purposefully rather than sink into your underpants and just throw the towel in!

My favourite new heroine, the feisty L3-37 from the new Star Wars film Solo.

I digress here a little to my new droid heroine L3 -37. She was created but then recreated herself with new droid parts she collected along the way…she explains to her new ‘organic overload’ Lando, “We’re programmed to learn. Which means we grow. We grow away from that singular moment of creation, become something new with each changing moment of our lives—yes, lives—and look at me: these parts. I did this. So maybe when we say the Maker we’re referring to the whole galaxy, or maybe we just mean ourselves. Maybe we’re our own makers, no matter who put the parts together.”

We’re our own makers, no matter who puts the parts together and I hate to say it, whether you are dealt a good or bad hand, the only thing one can do, is play it as best you can. So I see Kate’s recommendations as being for both people with a brain injury and for people who love & look after a person with a brain injury too. I’ll give you wee preview but you’ll have to buy this wonderful book to get the full idea.

1. Try new things – Overtime when we thought we were boxed in we would try something a little different. This may lead to a lot of quirky idea fails but at other times to successes. Don’t wait for some professional to guide your hand (and that’s coming from a speech pathologist!)
2. Try old things – Often we give something a go and it doesn’t work but then if we try again sometime later it does. Reading is one of those thing for Tilly. Sometimes she can make out words and other times forget it. At times she wants to make and then it goes. Recycle and upcycle your own life! Same with carers. One month you have no time to squeeze in a much loved and needed activity and the brown stuff hits the fan, and  the voila, you find a way to get back in there. Just because something hasn’t been accessible or worked for a while, doesn’t mean that will always be so!
3. Prioritise yourself – We do this for Tilly by reducing noise and activity in her life. We do it for each other by expressing love and having snippets of good quality family time. I do it for myself with exercise, meditation, journalling & making (none of which happens consistently). Cuddling Tilly and Reuben – holding the ones you love. Good food. Lots of sleep. Having fun. Creating little adventures. Listening to your gut instincts.
4. Feel proud of your body – We cannot make Tilly or Reuben proud of themselves but we can be honest, authentic, not pretend that this big disaster hasn’t happened or that at times we are not afraid. We help Tilly by encouraging her to make choices about how she looks and to some degree where she goes in that body of hers. We talk openly with people about our experiences rather than hide behind ‘Yep all good mate’ – encouraging her to ‘own’ this new self.
5. Accept that grief is part of the process – This is super hard. Some days it just hits like a hurricane and I cry. There is no pushing grief away. My daughter has suffered and will suffer and her and our lives will never be the same. I worry already about what happens when I die. I want her to find a lover, have a baby, feel connected. There are times when I look at the other girls her age and my knees feel like they will buckle. In some ways I dread her year six graduation as I don’t want to see her lined up  next to her peers….all ‘normalish’ and thinking about boys (or girls) and what they want to be when they grow up. And Tilly now looks ‘disabled’, subtly lopsided, a little quirky….people can tell there something going on there even if they don’t know what.
6. My add ons – if at the moment you are ‘able’  (but may not be when your old) try really hard to imagine what it would be like to not be able to do what you want, when you want, with whom you want, and the way you always did it….it may help you ‘be’ around people with  a brain injury or other disability. Think about this….
   • You can’t read so have no idea what is in the products at the supermarket or how much they cost. You can’t choose a song on your phone cause you can’t read the title.
   • The noise of being around other people chatting makes you want to crawl into a ball and hide under a blanket. Cafes…forget it!
   • You can’t remember the name of your favourite food, so can’t ask for it.
   • You forget that everyone else walks fast as you kneel down to pat a dog in a busy street and you cause a ‘people crash’.
   • Your can’t answer the phone. You don’t ‘get’ what the other person is saying.
   • You can’t understand if people talk at a normal speed. You need pauses and less information but most people are too fast.
   • There are no footpaths, so its hard to walk and impossible to wheel if you need a mobility aide.
   • Your support worker is sick, so you can’t go out today.
   • People don’t understand that when you mean a ‘quick visit’ you mean less than an hour when all you pals have 48 hr sleep overs.

Rise Up by Andra Day

So where does that leave us. Well, in the only place I feel I can be as a parent. Looking for inspiration to make each day better.  Finding the ‘fight’ to advocate for my daughter to be well educated and supported to be an equal in our world.  Finding the strength and love to be a different parent than I expected. Although about a different situation I love the words to Andra Day’s song Rise Up.

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousand times again
For you

And lastly I offer you a way to support us.  A loving Kindness Meditation by John Kabat- Zinn (click on name to see link)

Imagine Tilly in your heart and say these words with loving intention:

• May Tilly be safe and protected and free from inner and outer harm.
• Many Tilly be happy and contented.
• May Tilly be healthy and whole to whatever degree is possible.
• May Tilly experience ease of being.

And with that folks, I think I need to go and knit a sock!

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.

June 2015 Matilda in intensive care and hardly responsive.

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!

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.

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

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!

“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!

 

 

 

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.

 

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.

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…….

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.

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.

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!

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?

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!”

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.

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)

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…….

 

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.

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!

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.

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.

 

 

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!

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.

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.

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.

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…

 

Where did all the words go?

Language is a slippery fish. As a speech pathologist I often feel that parents and teachers are great at identifying speech sound issues but ‘language’ is a far trickier thing. Matilda emerged from her acutely ill phase with both motor speech issues (dyspraxia) and severe language difficulties – these are sometimes called naming or word finding issues. Finding ways to hunt down those words that had gone walkabout or replant those that were lost entirely has been one interesting journey!

I would like to share the way that I often talk about ‘language’ to myself and to parents at clinic. Whittling it down to a simple idea may help explain why I chose to do mostly ‘INPUT’ tasks for speech therapy.

Speech sounds versus language in a nutshell.

Speech sounds roughly are the individual units we hear that make up words. So I can change ‘mat’ to ‘sat’ by moving my articulators differently. Most of us can ‘hear’ when this goes wrong because ‘cat’ becomes  ‘tat’ or words are slurred for example. Language is a tricker fish altogether. It’s the words that we know and how we put them together. You know that ‘Nicole eats carrots’ makes sense but ‘Carrots eat Nicole’ doesn’t and so on.

We can imagine language as a neatly organised filing cabinet.

Imagine ‘language’ as a filing cabinet. Everything we hear, see or experience is neatly organised in a drop down file – lets say one for ‘animals’, ‘sea animals’, ‘animals with four legs’ or ‘action words for animals like galloping’. This well organised system means that we can store words in a way that enables us to find them quickly again, when we want to understand what someone is saying (receptive language or comprehension) or say something ourselves (expressive language).

What a mess!

The problem with an acquired brain injury like Matilda’s is that it messes up the system.

• It may be a temporary issue – the door is jammed but if I come back tomorrow I will get it open. Another analogy for this is a set of tubes that are clogged. Therapy enables them to be ‘cleared’ so that language flows through more quickly.
• It may be permanent word loss – the whole drop down file has gone so we need to put all of that information back in.
• It may be that the file is misplaced – trying to get the words back into their correct file. Until recently when Matilda wanted to say ‘pyjamas’ she would say ‘bed sheets’. She was almost in the right area  with ‘bed things’ but not quite in the file labeled ‘Clothes for bed’.

We get about as many complaints now from her about cleaning up this messy language system as we used to about cleaning up her room. Same, same but different. Then she couldn’t find her toys and now she can’t find her words.

Filling up the bucket rather than testing our kids.

Often speech pathologists, teachers and parents ‘examine’ kids in the name of teaching them. We pick up a picture book and quiz them with ‘What’s this?’ over and over. The problem here is that our kids are showing us what they know or don’t know rather then learning more.

Clinical experience has shown me that a better way may be to ‘fill up the bucket’. Keep labelling/naming the item, repeat it at least five times in short sentences and then give small clues to help them say the new word.

So if you were looking at a farm page you may say:  ‘horse’  ‘The horse is jumping.’  ‘Brown horse.’ and ‘The horse is old.’ and  then after several days say ‘It’s a ….hor…’. If the child has laid down the word they will end the sentence easily.

This is input therapy – leading by example or modeling with high amounts of repetition and pretty much the basis for how we are rebuilding Matilda’s language system…..one file at a time.

So far we have played structured games and focussed on actions, colours, days, people words, clothes, utensils, things for school, vehicles, describing people, and body parts.

Playing Mr Potatohead Pals to learn clothing and body part words.

When Matilda is tired or has just started learning new words, they sometimes get stuck or don’t bubble to the surface. You can see the strain on her face as she tries to ‘pull’ a word out from where it is in hiding. But I know that the process is working and here is how.

For the past two months Matilda  has helped with setting the table most nights but didn’t learn the words for ‘knife, spoon or fork’. Despite her receptive language being mostly O.K she would frequently hold up the wrong object when I asked her to say “Pass me a fork.”. The week we started playing games focusing on the names of objects in the kitchen and their associated action words …’stirring with a spoon’ …she nailed it!  (and everything she was able to say in a recent neuro-psych assessment had been part of our therapy).

Over the next few weeks I will share exactly what activities we played, what games we chose and how to make some of your own resources.Until then I’m off to crochet some more Christmas presents!

 

 

 

 

 

 

 

 

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.

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.

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.

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.

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.

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.

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.