Category Archives: Parenting Techniques

 

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.

 

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

COVID-19 & Your Kids:

Adapting to the New Normal

 

 

What does it mean to be a child? What are their roles in life and how do they feel fulfilled and gain a sense of purpose? What exactly are the things that children need to do in their everyday lives? These are the central questions for an Occupational Therapist when looking at how best to help improve lives of the children they work with. When faced with challenges of any sort, be it accident, injury, hospitalisation, loss of confidence or mental trauma, inevitably there will be changes in a child’s ability to engage in activities and changes to their everyday roles. There is great value, therefore, in considering the impact of Covid-19 from an Occupational Therapy perspective - to look at what these changes mean for our children and how their new circumstances will affect their roles in life and their engagement in activities and relationships.

 

A New Normal

COVID-19 has introduced not least a new virus; but a new way of life for all of us. Children are spending their days at home in a way that is alien compared with their usual routine, with loss of school, loss of extra-curricular activities, loss of trips out (even to the shops!), and loss of ‘in person’ contact with friends and extended family members. Parents will be concerned about the effect this may have on their children’s development, their physical and mental health as well as their family’s wellbeing. An additional and lingering challenge of this virus is the uncertainty around when life will get back to ‘normal’, or if we will ever go back to that normal. Are we looking at a new normal? It seems 'a given' now that many logistical aspects of our lives will be altered more permanently, and we have no choice but to adapt.

 

Supporting Our Children

Children have many roles in their life which give them meaning and a sense of purpose - they are sons/daughters, cousins, grandchildren, playmates, pupils, learners, helpers, growers, friends, siblings, ballerinas, runners, climbers, artists etc. etc. What we must remember with children is they are internally programmed to fulfill these roles and to develop and grow, not only physically, but emotionally too. The challenges of life rarely thwart these drives and, if we can support our children during this period with clear and containing messages and boundaries, we will allow that innate drive to continue. During covid-19, we can help our children to find new ways to fulfill these roles and to, more generally, engage in activities of everyday life that give them purpose.

 

Top Tips:

Here are some top tips to help address the occupational challenges that covid-19 present for children:

  • See the current occupations of your child as valid and see how they can still perform their previous roles (e.g. as son/daughter, playmate, learner, ballerina) through different means and with differing emphasis, and enable them to use both their own existing skills and assistance from you to adapt to a challenging situation.
  • With home schooling – try to be less of a teacher, and more of a learning supporter. As long as they are fulfilling their role as ‘learner’ in some way, this is all that matters. Remember that there are multiple ways to learn (not just the ones taught in schools) and that real life learning is valid too. This time is an opportunity to look at learning through doing (which is harder to do in a school environment), which may well work to some children’s strengths. Use activities like cooking, gardening, cleaning and daily chores as opportunities to learn and enjoy a new role. Learning through doing is central to Occupational Therapy philosophy and allows the full range of learning styles to be utilised, such as kinaesthetic learners (children who learn best when moving or doing). Children will be able to get back to their normal learning soon enough, and you may well have a new wealth of information to share with their teachers about what you noticed about your child during this time. See this time as a way of doing things differently, and not necessarily to your child’s detriment. If parents promote the positives of this phase, children will learn to remain positive and be open to learning and adapting.
  • The loss of school is an obvious change in role, but try to look out for other losses - perhaps your child has a very invested role as a sportsperson or in a particular hobby? Or perhaps they are very invested in a role as a grandson or as a step-sibling? Try to think of ways they can fulfill these roles in different ways and connect them with the activities, hobbies or relationships that form a firm part of their identity.
  • Try to maintain clear daily routines such as mealtimes, shower times, dressing, play, and home-schooling timetable. This will help give them purpose and drive.
  • Keep moving; don’t stay still for too long. Avoid long periods in separate rooms, exercise together and eat healthily; use this as a time to try new recipes and share ideas about what the child would like their week to look like. This will help your child retain a sense of purpose and control over their daily life.
  • Sleep routines are always vital but especially during this time. Set alarms to get up, avoid daytime naps and late nights. Everyone will benefit from this in the family.
  • Encourage your children to keep in contact with their friends and wider family through socially distanced versions - Skype, phone calls, FaceTime etc., and talk about other family members, so that they know they are still around and can look forward to resuming contact when possible to do so.
  • Filling the day can understandably be hard with children, who notoriously become bored very easily. On boredom, use this period to allow your children to experience boredom, it can lead to creativity and is an essential part of child development. We are used to busy timetables but it’s also vital that we and our children have unstructured times where we can reflect and maybe learn to be content with little to do (children with special needs may find this trickier but it is still worth a try). In my experience your child may struggle ‘in the moment' but in the longer term it may be useful for emotional growth.
  • Talk to your children about what is happening but be careful not to overwhelm them with too much information (for example, constant news updates). They need to know the social distancing rules, that we have a virus in the country that can make us poorly and, in some cases, could cause us to go to hospital where most people will be treated successfully, but some sadly will not. Remember they are not used to seeing as much news, so limit this as if routines were as before, e.g. evening news before dinner if that was your previous norm. It is the adults’ role to manage the anxieties that COVID-19 has given our families.
  • Finally, play and fun! Play is the natural occupation of the child, it’s at the very root of their educational journey and will enhance their enjoyment of learning and growing all round.

 

The Royal College of Occupational Therapists (RCOT) provide online advice for parents who are socially distancing and isolating with children. www.rcot.co.uk/staying-well-when-social-distancing

 


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