The Purple House Blog

 

Takiwatanga
A Letter to My Daughter

 by Anon 

 

Dear Daughter,

Do you remember when you were seven and you had all those invisible friends? On the way to school, you told me about the fairies that helped you in Maths. Once we went to the forest and you made friends with a pack of invisible dogs, who came home with us and stayed for a week. In your bedroom, you had invisible fairy kingdoms. It was a huge transitional time, you were settling into a new school and I had recently separated from your dad. Your invisible friends nurtured you, when you were feeling vulnerable.

It was also an act of proactive resilience. Friendships didn’t come easily to you. When you were a toddler at soft play centres, you would sit with us, rather than play with other children. We used to walk over to the play area, holding your hand to encourage you. It was like persuading the moon to orbit Jupiter. Your gravitational pull was to watch from the sidelines.

Looking back, it was clear that you were camouflaging amongst adults. My mum always said you were, ‘born with an old soul’ - as if your childhood was one large waiting room for young adulthood.

At the time though, we were worried about you: sleepwalking, meltdowns, physical and emotional aggression and very low self-esteem.

Aged seven, you had your first CAMHS assessment. All those child-centred questions bombarded you but you answered everything with sweet, tactful acquiescence. Everything was fine, nothing was wrong - smiling, nodding like you were taking a test.

The CAMHS report came back a few weeks later, littered with typos and inaccuracies and a rather cryptic generalised anxiety diagnosis. Those professionals clearly hadn’t been asking the right questions or frankly even listening.

There was nothing generalised about your anxiety, it was specific. You were scared of the ocean; those big roaring, crashing waves made you cup your hands over your ears on holiday. Scooby Doo terrified you. Even when the baddies took their masks off, you never got the algorithm. You hated surprises or spontaneous trips, you needed advanced notice. The smell of cooked broccoli made you nauseous.

By the end of year six at Primary School, you’d been labelled with anxiety, social panic and depression and endured two separate programmes of CBT therapy. The school nurse concluded that you were ‘resilient’ because you had found five things to do in the playground by yourself when you had nobody to play with: hopscotch, running, skipping, talking to lunchtime staff and reading.

One of your CBT therapists was determined to cure your growing agoraphobia, and after one particularly warm February half-term spent wholly indoors, I too was also desperate for a solution.

The therapist used a desensitisation technique, where you were exposed to your fear gradually, over time. For some bizarre reason, she chose Tesco Extra as your ‘golden oracle’. I thought perhaps we’d start with the corner shop but she went straight for a supermarket averaging 70,000 square feet (which is, roughly the size of 25 tennis courts or a third as big as the area occupied by the aerial roots of The Great Banyan Tree!). Nothing like cutting straight to the chase!

There were five steps before achieving Tesco Extra ‘nirvana status’: Step 1 was standing outside Tesco; Step 2 was shopping with mum; Step 3 involved diverging from mum to find one item; Step 4 meant buying one item independently; Step 5 was an unchaperoned mini-grocery shop.

You were discharged before I realised you had hoodwinked her. You lied to her all along because you didn’t want to go into Tesco Extra after all but pretended you did to ‘make her go away.’ Intrigued and rather baffled, we chatted some more. It transpired that you felt she was disingenuous, saying “she just wanted my anxiety to go away.’

That sweet acquiescence had given way to being economical with the truth. However in this case, it was justifiable self-protection from a professional obsessed with ticking off a checklist.

By the summer term, you were threatening to hurt yourself and still not leaving the house. After numerous trips to the GP and long chats with the head teacher, who suggested contacting a private Educational Psychologist, we raided our savings.

At school you were a ‘model pupil’ - hardworking, polite, compliant and quiet. So there were no grounds to refer you to a school-based Educational Psychologist. I thought about road traffic accidents where the paramedics assess the scene, looking for the quiet, unresponsive ones. We needed help - and quickly.

I don’t believe in fairy tales but the day Rachel, the Educational Psychologist came into our lives, our lives changed forever.

We often talk about ‘life before Rachel,’ and ‘life after Rachel’ in hushed, mythical terms. She spent a whole afternoon with us, promising to ‘leave no stone unturned.’ It was liked being interviewed by Oprah. We were assessed separately.

I remember sitting in the garden answering questions about my childhood, parents, pregnancy, childbirth, mental health, with your childhood under intense scrutiny - but always in a gentle, non-judgemental way.

The experience was incredibly cathartic (like a Nicholas Sparks novel, where the hitherto unfathomable plot suddenly unfurls to make complete sense). All those years of mental health professional checklists, fruitless CBT sessions and agoraphobia, tinged with meltdowns were finally going to make sense. You said afterwards that you immediately felt comfortable with Rachel, that you let your mask down and spoke freely for the first time. You had never said that before.

Three weeks later, we received a report with no typos or inaccuracies. It simply stated that all your quirks, and social and emotional regulation difficulties were part and parcel of Asperger’s. But it was said with the grace of Oprah, complimenting you on your hyperlexic love of writing and reading and mature outlook. It didn’t feel like a death sentence, more a holistic, contextual report with a new, neurological explanation.

A year on from your diagnosis, autism lives amongst us. But it was here from the beginning, just hidden, mistaken for something else.

It’s common for girls to be diagnosed with eating disorders or other mental health conditions before discovering autism. According to the National Autistic Society (NAS), only a fifth of girls with autism in the UK were diagnosed by the age of 11, compared to half of boys. Many women remain undiagnosed until later on in adulthood. This is partly due to an inbuilt diagnostic bias towards a male presentation of autism, often overlooking the subtle cues of female masking, where autistic traits can be hidden in daily life.

We’ve come a long way. You have an ‘autistic-radar’ for other autistic children and teenagers, like some invisible wavelength. But you always speak with empathy and kindness: ‘they struggle, like I do.’

In some ways, the recent lockdown wasn’t a huge challenge for you. Remote online learning suited you; you learned at your own pace, without the annoying disruption of other children in the classroom. In addition to school work, you read over thirty novels and wrote various short stories, novellas and have now started a novel.

The interesting part has been your burgeoning political awareness. The Black Lives Matter movement has galvanised your inner sense of injustice and has led you to challenge classmates who posted, ‘all lives matter,’ comments. I am really proud of you for the way you handled this; asking them about why they thought this, and discussing it with them before you decided whether you could remain friends. For you, this really is a black and white affair and you stand against all racists. As you are also questioning your sexuality, you will not tolerate homophobia in any form.

Maybe all those years of feeling separate - sitting on the sidelines at the soft play centre; the lonely hopscotch in the playground; the invisible friends - have culminated in a recognition and understanding of feeling different. And with that, comes a desire to fight to protect others; those who are ridiculed or attacked for their skin colour or sexuality.

I wonder if you will lead protests on the street or write powerful polemics, denouncing prejudice and protecting civil rights.

The Maori refer to autism as “takiwatanga,” meaning in his/her own time and space. What a beautiful, sensitive concept. May you always remain in your own time and space.

 

Love Mum always xxxxx

 

 

 ♥   May you always be free from professional checklists;

 ♥   May you always be seen as someone with autism, not just autistic;

 ♥   May you still find invisible friends, if you need them;

 ♥   May you always follow your own gravitational pull;

 ♥   May you only enter Tesco Extra, if you want to.

 


 

Recommended further reading:

  1. How to Be Autistic by Charlotte Amelia Poe.
  2. Can You See Me? by Libby Scott and Rebecca Westcott.

 

Are You Smiling? The Complex Implications of Face Masks

Are You Smiling?
The Complex Implications of Face Masks

 

 By Annette Willett 
Associate Occupational Therapist at the Purple House Clinic, Loughborough

 

The extensive new government rules on the wearing of face mask / coverings in many indoor public spaces was written into law on the 8th of August 2020. We are now slowly getting used to seeing masked people everywhere, but this strange new world we now inhabit brings a wealth of new challenges.

 

Although the rules vary slightly across the UK, face coverings are generally now required in most public indoor settings (excepting children under 11 as well as people with certain conditions for whom mask-wearing is not advisable or could cause significant distress). Such measures have markedly changed our daily lives, and will continue to do so for some time to come.

Regardless of whether they are wearing face coverings themselves, what might this mean for young people and for those with mental health challenges or disabilities?

 

Children

Whether aged over 11 and required to wear a face covering (or under 11 and not), young people may struggle with the mask-wearing world. Indeed, many of us may have particular empathy for the experiences of infants and young children who will spend many formative months meeting the wider world around them without the benefit of seeing people’s smiles and facial expressions. How will this impact their developing brains? We must hope that the impact is marginal when compared to the non-mask wearing experiences they will encounter at home and in childcare settings.

From an emotional point of view, the idea that there's something in the air that can harm us, is a difficult concept on its own for the developing child. That it’s possible to cause illness to others further compounds the worries. 

Whilst parents worldwide seek to help with their children’s difficulties, they must also try to understand and process the ever-changing news and guidance whilst simultaneously coping with their own fears and anxieties.

We don’t yet fully know how mask-wearing and covid in general will impact upon our children’s perception of their own safety within the world, but we have to accept that their worldview may be irreversibly altered to some degree.

However, by their very nature, children and young people do often feel a certain sense of indestructibility. To a large degree this is a biological imperative as (even in the pre-covid world) children have always had to navigate a continual series of new challenges in order to become well-rounded adults. ‘Risking on purpose’ is an essential skill, and parents will need to be balancing those vital opportunities with the covid challenge. 

Somebody really needs to write a chapter on covid and put it into that ever growing ‘parents manual’ that we all wish we had to hand when children are in our care! Until then, there are a few key things we can do to support our children:

 

  • Give them age-appropriate information about covid;
  • Offer a calm and balanced perspective about risk and mask wearing;
  • Pay attention to our children’s emotional experiences;
  • Stay curious - sometimes our assumptions about our kids’ feelings can be misguided or plain wrong.

 

Mental Health

Whilst covid has challenged us all emotionally, it is particularly difficult for those who were already experiencing mental health challenges. Everyone’s psychological experience is different but, for some, key pre-existing vulnerabilities such as social isolation and fears about safety will have been deeply exacerbated.

For these people, this year will have undoubtedly brought about some very dark moments. Even those with seemingly robust mental constitutions will have been tested by covid and lockdown.

Face coverings add a further challenge for people struggling with their mental health. Imagine navigating a masked world when you already struggle to trust those around you and fear what people may say or do. Imagine having cripplingly low self-esteem and issues with body image and being asked to wear a mask. Imagine feeling ‘masked’ already, burdened already with experiences of abuse that you cannot tell – and then add to that an actual mask to make you feel even more hidden and alone.

There's no doubt that mask-wearing can be distressing to our mental health. Therefore, sensitivity and support for those around us who may be struggling with masks is vital at this time. Furthermore, we must try to remember that people’s mental health difficulties are rarely conspicuous  - so let us all think carefully and empathically before we challenge those naked faces.

 

Disabilities

Masks challenge our ability to ‘read’ others and this may be particularly tricky for those with an Autism Spectrum condition - where they may already struggle to process social communication. 

Masks also present challenges to individuals with other types of disabilities - such as impairment of vision, speech or hearing. For the deaf community in particular, there are obvious and significant challenges around lip reading.

With this in mind, we need to think about alternative ways that we can communicate intent, meaning and expression. At this time it’s important to pay particular attention to your body language, tone of voice, communicating through the eyes, eyebrows and hands (give a wave to say hello!). 

The Duchenne smile is a particular type of smile where the corners of your mouth lift at the same time as your cheeks causing the corners of your eyes to wrinkle. This type of smile signals genuine pleasure and enjoyment - and right now it will be more welcome than ever! 

 

The Duchenne Smile - Smile with Your Eyes!

Face Masks - 'The Duchenne Smile'

Vera Davidova / Unsplash

 

For all of the potential negative psychological implications of mask-wearing, we should also bear in mind that masks may actually come as a relief to some. Face coverings could potentially provide a useful barrier, allowing some of us to explore our social world a little more confidently.

 

Learning from Others

I have listened with great interest to the opinions of those around me regarding mask-wearing - and it’s fair to say that there appears to be a bit of ‘Marmite effect’ going on: Some are embracing them whilst others are extremely bothered by them. 

A wonderful lady I know draws a picture on her mask at work before she throws it in the bin at the end of each work day (thank you Kerry for sharing these!). A little bit of good humour can go a long way!

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Another friend of mine accidentally bumped into a stranger in a shop (inadvertent error on the one-way system). She immediately apologised from under her mask, only to be told, “Well, you don’t look sorry!”. My friend was left wondering if the stranger really meant that comment, or whether she had missed the possible sarcasm as both were wearing masks!

I am sure all of you will have some very personal stories about masks which I would be very interested to hear.

 

The potential complications from wearing face masks!

 

Tips

  • Be kind! We are all in this together - and whilst tensions may be high do try and support anyone and everyone.
  • Pay special attention to those who may feel more vulnerable due to their age, mental health or physical health disabilities (and remember many problems are not visible).
  • For people who can’t wear a mask and fear judgement for not doing so, consider wearing a badge saying ‘face covering exempt’ (some local authorities are providing these).
  • Talk to your children - be curious about their feelings and educate them in a calm and balanced way about the risks measures in place.
  • Consider how you communicate (even more so now): Be clear, be positively expressive and remember our brain knows we are smiling, even if it’s not apparent due to our masks, so the feel-good endorphins will still be released.
  • Have a couple of extra masks tucked away. We’ve all left home and had to go back for our keys, glasses, etc. So let’s try and not add masks to this list!
  • Wash masks daily if they are washable and dispose responsibly of non-reusable masks. We don’t want a landfill problem or to find our sea creatures wearing them in a month or two! 
  • Also think about where you are buying your masks from. This could be an opportunity to support small or minority group businesses that have been disproportionately affected by covid.
  • Stick with it. If nothing else, this pandemic will have taught us about the importance of resilience and persistence - skills that we will always need!

 


 

Other Articles by Annette Willett:

Why Everyone is Going Bananas for Banana Bread!

 

Other Covid-related articles:

There's No Place Like Home: The Secret to Harmonious Relationships During Lockdown

COVID-19 & Your Kids: Adapting to the New Normal

Our Family In Lockdown

 

Why Everyone is Going Bananas for Banana Bread!

Why Everyone is Going Bananas for Banana Bread!

 By Annette Willett 
Associate Occupational Therapist at the Purple House Clinic, Loughborough

 

Why has the nation so passionately reignited its love for this yummy loaf during lockdown?

Is it just that it tastes so good? Have we all accumulated mountains of bananas? Or do we all now fancy ourselves as future Bake Off winners in this time of unprecedented domesticity.

An Occupational Therapist may well have the answers!

 

The History

Banana bread first became a standard feature of American cookbooks with the popularisation of baking soda and baking powder in the 1930s. It appeared in Pillsbury's 1933 ‘Balanced Recipes’ cookbook, and later gained more acceptance with the release of the original Chiquita Banana's Recipe Book in 1950.

 

The Recent Rise

In the UK we now have recipes from Jamie Oliver, Mary Berry, Nigella and of course Delia Smith. My favourite recipe is Nigel Slater’s ‘Black banana cake’ which contains chocolate....and it is VERY good! GBBO’s Selasi even brought the humble banana bread to our screens not so very long ago.

 

The Versatility

You can make it if you are a vegan or gluten intolerant - it’s so versatile! And this may well explain why it’s become the staple bake during lockdown. An added bonus is the flexibility to use basic store cupboard ingredients - the riper the banana the better (which, in these frugal times, is a great way to use up leftover fruit and reduce waste!).

 

Bananology

But what does it actually do for us? There must be something about baking that serves us so well in times of crisis...

‘Activity Analysis’ is a scientific approach that enables Occupational Therapists to gain a deep understanding of a particular activity - such as baking banana bread!

This process breaks down an activity into steps and detailed subparts so that others could be instructed to complete the same activity (e.g. methodology, equipment, materials, cost, time, personnel etc.). By analysing activity in this way, Occupational Therapists can learn when, where, for whom and under what circumstances the use of the activity might be therapeutic.

 

Analysis

Let’s delve deeper into banana bread (yes please!)...

Purposeful activities such as baking have both ‘means’ and ‘end’ benefits. The former are the skills required/gained by ‘doing’, and the latter refers to any functional gain from completing a meaningful and purposeful activity.

 

The ‘Means’ Benefits

  • Motor Skills (from moving and interacting with tasks, objects & environment): We can improve our posture, strength and effort, and fine and gross motor skills e.g. we bend, stand, reach, lift, cut, pour and mix.
  • Communication & Interaction (communication skills and coordination of social behaviour): Speech and language skills develop through information exchange via verbal and non-verbal communications e.g. we bake and work together, read recipes, use literacy skills, use computer skills, express/share thoughts and ideas.
  • Mental Function (affective, cognitive and perceptual): Baking can enhance general and specific mental functions, and sensory functions such as motivation and impulse control e.g. don’t eat all the raw mixture! Baking can improve: attention; memory; emotion and perception; smells; touch; taste; movement; balance; hunger; linked emotions such as memories of baking with grandma; sequencing, time management; and problem solving.
  • Emotional (so how do we feel about baking?): Baking can be fun & bring shared enjoyment. There’s the excitement of anticipating the outcome. It can help us recall pleasant memories of past times; develop mutual connections; be mood-lifting; provide structure; teach us to manage frustration; and so much more.

 

The 'End' Benefits

We all recognise that sense of achievement from baking a tasty cake or loaf! It gives us ‘role affirmation’ and/or knowledge of a new role or competency. It also lets us reflect on our skills if something didn’t go quite right. And we can usually work out why. Did we rush the measuring? Was the oven temperature perfect? Did we open the oven door early to sneak a look? Did we sufficiently grease the tin, etc. etc.

The great thing about baking is that no one usually gets hurt and it’ll probably taste good even if we have to add custard or dunk it in our cuppa! Furthermore, we can take positives by reviewing any failings so that we can put it right next time. This is a great life skill to acquire.

In addition, we can gain a sense of pride, and the satisfaction of providing for family or friends. Baking at home is also very economical and, by virtue of lessening the need to go to the shops, it can even help lower the risk of exposure to COVID at this time.

Of course, we're all acutely aware of our increasingly wasteful society - and every little helps. We can now feel rightly proud of ourselves that those overripe bananas, that were otherwise destined for the bin, have been given a tasty purpose.

And the ‘icing on the cake’, is the cake!. We have the yummy treat to eat, along with the kudos gained from friends and family (including the feedback you get from millions of Facebook ‘likes’ and ‘loves’). Got to love social media sometimes!

 

Therapeutic Benefits

So it's clear that simple wholesome activities, such as baking Banana Bread, can be beneficial for mental well-being.  Whilst nobody could claim that baking banana bread will solve all of our problems, such activities may help to give us a sense of normality, pride and purpose during difficult times.

 

The Future

So, the future is bright for home bakers. The old bread machine that’s been sitting in the shed for years has been well and truly dusted off  - and many, including myself, are now baking bread on a daily basis. 

Facilitating this craze, many small companies will now deliver larger quantities of flour and other baking ingredients. Families can be healthier, happier and more connected through home baking. Connection at these times is particularly poignant.

But let’s not wait for another lockdown to re-awaken this time served occupation in our own homes! So next time you decide to bake, remember it’s not just about the cake - it’s about SO much more!!

 


 

Inspiration & Resources:

https://thevintagehousewife.me/the-original-chiquita-banana-bread-recipe-1950/

https://www.bbc.co.uk/food/recipes/black_banana_cake_52982

https://cookingmamasuk.wordpress.com/

Language & Mental Health


 

How Teenspeak Can Shut Down Conversations about Mental Health

 By Alice Gamble 

 

As an 18 year old, two of the most common phrases I hear in response to expressing something about your mental health are “same” and “mood”.

For example:

 

Teen A: “I feel so stressed”;

Teen B: “Same.”

or

Teen A: “I feel rubbish”;

Teen B: “Mood.”

 

These two words have become quick and simple ways for young people to respond to their friends’ thoughts and feelings - and, to many, these words may seem like innocent slang used by 'Generation Z', much like “lol”.

Unfortunately, from my own experience as an anxiety sufferer, I know that these two short words can have a negative impact on your mental health. They are classic conversation stoppers; it can be pretty hard to expand on something when a few sentences worth of conversation have been summed up in one word!

 

When you’re struggling with your mental health it’s not just normal stress

 

In a fast-paced, modern world we have all experienced periods of uncertainty or worry caused by external factors such as work or relationships. However, these periods usually come to an end or arise as the external factor comes and goes; this is known as stress.

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Mental health problems (in my case Anxiety) are a bit different. Mental health problems can persist whether or not the cause is clear; a clear cause could be a traumatic life event, but mental health difficulties can also be caused by an accumulation of smaller less noticeable events.

 

The best analogy I have found for what happens with unclear causes is a bucket of water :

Stress Bucket - The Purple House Clinic

For an anxiety sufferer, the water is your stress levels - and as stressors are added to the bucket, it will fill up until it overflows; the peak of anxiety coming out of the blue with no apparent trigger. The tap at the bottom represents the effect verbal interactions can have on stress levels.

This is where “stress” is now something more. Whilst stress and anxiety are similar, the words are mixed around so much that I feel they have lost their distinction. And I fell into this trap too.

 

Prior to my GCSE exams at school, saying to my friends, “oh I’m so stressed” - when in reality (unbeknownst to me at the time), it was more than just normal stress. I was suffering from a longer term problem with anxiety.

 

Most of my friends could distinguish that GCSEs were not the end of the world; that nerves are normal. But they could walk into the exam hall and out (maybe with some tears) and carry on.

 

I, on the other hand, saw my GCSEs as the deciding factor of my future (partly due to biased thinking patterns where I negatively predict the future, or see things in black and white terms).

 

I had panic attacks - sometimes even before I had even entered the exam room. I would often sit in the exam in a state of distress, my mind flicking back and forth between positive and negative thinking -  both during and after the exam.

 

Then when the exams were finished, something else would trigger all these feelings again - results day, sixth form and so on. The feelings remained even as the factors came and went, and sometimes I just had the feelings even when I could not work out why.

 

We need to carefully listen, and carefully respond, to our friends

 

Much like the lack of distinction between stress and anxiety, ”same” and “mood” easily diminish someone’s mental health problems i.e. if we do not carefully listen to the conversation, notice our friends behaviour or mood.

 

How easily these words can halt a conversation in which someone may have been crying for help, or finally having the courage to speak to their friends about what is going on:

Mood - The Purple House Clinic Blog

Without realising, and unintentionally, (B) could have halted the conversation where (A) was going to ask for help or share their problems.

 

And it is not to say that (B) cannot be feeling the same as (A). In fact when mental health problems are discussed openly it is easy to find that many are suffering similarly, and so new lines of support are potentially opened.

 

But the words used (if we’re not careful) can diminish someone else’s feelings or halt the conversation. There are better ways to acknowledge if you are feeling the same, perhaps saying:

 

“I think I understand what you’re going through...”

or

“I've been feeling the same lately as well…”,

 

These more open-ended sentences allow the conversation to continue, and show support and willingness to connect.

 

 

My friends helped me to talk about my mental health

 

When I first realised I had anxiety, I was at a loss of words to describe my feelings around exams; “stressed” worked well and so I continue to use this even though I know it’s something more. But because I have had open conversations with my friends about my ongoing difficulties with anxiety, they know that closer to exams “stressed” for me is not just stressed”.

 

These conversations only happened because they could continue; my friends did not say “same” after my first sentence, they listened and at the end of the conversation, a few actually said ‘I think I know how you are feeling’. 

 

It turned out they were actually feeling the “same” but, by not just saying that one isolated word, I felt my struggles were understood and mutual support was established.

 

What a lot of us need when we’re struggling is simply this - for the conversation not to be halted.

 

Keep open, keep talking!

 

 


Other relevant Purple House Blogs: Our Family In Lockdown (Guest Blog), The Secret to Harmonious Relationships During Lockdown