DIY no sew weighted lap cushion

Well, it’s been a long week. T has been off school unwell at the beginning of the week which is always tiring. She gets very anxious when she’s unwell, and needs a lot of tlc day and night. She is now back at school, and improving but it has prompted me to look for new ideas to help bring calm!

One that I came across sounded potentially so multi-taskingly helpful that I thought I’d give it a go. Weighted blankets is something we’ve thought about for T but never quite got there. They are pricey or appear to be fiddly and time consuming to DIY (or at least they have become those feelings whenever I think about trying!) But yesterday I came across a no-sew weighted lap blanket/cushion which may give us the chance to find out whether T responds well to having a weighted blanket in the first place before I try and attempt to make one. And into the bargain, it uses mermaid fabric so it can be calmingly drawn and written into whilst using it.

It just so happens I have a mermaid fabric cushion cover waiting in a drawer for the right crafty moment so I have got it out this morning and got going.

The tutorial that inspired me can be found over on ‘lemon lime adventures’.

As is my usual crafting approach I raided the cupboards and used what I had. But I’m pleased with the initial result and am looking forward to T trying it out when she gets back. Friday night is movie night for us so it’s the perfect chance to give it a go. I’ll let you know how it goes.

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  • Raided the cupboards and found dried split peas, and little stones. Ziplock bags and of course the cushion cover.
  • Simply divided up the stones and peas, laid them across an old micro fibre towel and taped them down with box tape/parcel tape. Then folded the other half of the towel over and taped across to hold it all together.

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  • A little bit of careful jiggling and wriggling into the cushion cover, and zipped it shut!
  • Now enjoy!

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What is Pathological Demand Avoidance (PDA)?

‘Autism Spectrum Condition’ (ASC, previously ASD (disorder)) is an umbrella term in the UK gathering within it other particular autism profiles, or presentations of autism with their own nuances and quirks. Pathological Demand Avoidance is one of these profiles. I’ve been reading up about it, and about other’s experience of it because although I’m well aware every single child is unique there is something about this particular profile that resonates. It makes sense of some of the dynamics we see at home.

‘PDA is now widely understood to be part of the autism spectrum. Children who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control. Aspects of the profile may be variable at different times and in different places.’ PDA Society

It is not yet used as a diagnostic profile in every part of the country, it depends on the NHS district you fall into. So over the last few years I have been keen to find out what I can about it because I have found it’s the most insightful and helpful profile for us to gain better understanding of behaviours we see, and to learn strategies that support. As well as the social and communication differences, and the sensory differences common to autism spectrum conditions PDA’s particular characteristics are:

The distinctive features of a demand avoidant profile include:

‘Individuals with PDA can be controlling and dominating, especially when they feel anxious and are not in control of their environment. They can also be very affectionate, charming, sociable and chatty, when they are calm and feel safe.’ PDA Society, about PDA 

I see many unique strengths…

  • fascinated by people, and quite passionate about getting to know what makes them tick.
  • observant and detailed
  • thinking outside the box and problem solving (seen in the many amazing strategies used to avoid demands!)
  • creative
  • feels deeply
  • desire to get things right

I also see such extreme anxiety about almost every aspect of living life in a world that seems confusing and relentlessly, overwhelmingly demanding. I see a need for  understanding, and loving support.

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Let me take the mask off

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Masking – the art of camouflage that many (most female) autists spend a lifetime perfecting; the skilled, intentional blending into social surroundings, to become just like those around in order to become invisible & not looked at.

Both my girls are experts at masking. It’s a coping strategy they use in a number of social contexts, including school. But not at home, when it’s just us the masks come off and my girls can rest awhile (once all the pent up emotion, strain, and anxiety has exploded of course).

…”most of our participants are experts in pretending not to have autism — a phenomenon sometimes called ‘camouflaging.’ They said they wear a ‘mask’ or adopt a persona that is carefully constructed from copying the behavior of popular peers or fictional characters, or by studying psychology books.” (William Mandy & Robyn Steward)

The art of masking is pretty amazing really, and my girls achieve so much, and push themselves through so much because they do it so well. Both are fascinated by people, (as well as being bemused and overwhelmed, and anxious about them), and do a lot of people watching and deciphering. Both want to fit in and to build friendships among their peers. Neither like to feel singled out or looked at. Camouflage uses the skills of mimicry and echolalia, planning ahead and practicing phrases and gestures, and facial expressions – often in front of the mirror. It also involves concentrating on surpressing gestures and behaviours that have been noted to stand out or be unacceptable or misunderstood, like stimming for example.

“Most … said they found the effort of passing as neurotypical to be exhausting and disorienting, and many thought it contributed to their delayed diagnosis. There are no tests for camouflaging, and this is a major barrier to clinicians and researchers understanding and helping women on the spectrum.” (William Mandy & Robyn Steward)

As well as surpressing behaviours there is also an element of compensation going on in masking autism too. Learning ways of managing to maintain eye contact for example despite the pain it causes. Or finding out facts about a peer groups interests and role playing being into it too. It all takes constant effort.

“Being both autistic and an autism researcher can be a bit of a juggling act: it feels like wearing 2 very different hats sometimes,” Belcher told Neurology Advisor.

“The most important thing I’d like to convey is that ASD is not just a collection of impairments; it includes lots of strengths and abilities as well, which need to also be taken into account,” she said. At the same time, Belcher drew attention to the dangers of studying ASD as a “disease” and incorrectly regarding the spectrum as moving from “mild” to “severe.”

“A very high functioning woman, for example, who has learnt to camouflage her autism, may be rated by professionals as having very mild autism, when in fact she suffers a great deal with mental health problems as a result of constantly trying to appear ‘normal,’ ” Belcher told said. “There’s a lot more people with autism than we know of, and a lot of those people will be having a very difficult time. Professionals need to be more sensitive in their diagnosis of autism, and move away from these very black and white tick boxes of what autism is.” (Hannah Belcher)

Add into the mix the ongoing sensory demands of the day, and the fact that practiced phrases and gestures cannot guarantee the outcome you have seen happen before – because people don’t behave in a text book kind of way – and the picture is one that so easily becomes frustrating, overwhelming, confusing and exhausting. Masking is so very amazing, so very useful but it comes at a huge cost. In the general population it is estimated that 1 in 4 of us have significant mental health problems at some point, within the autistic community it is estimated at 80%. Anxiety disorders, depression, suicidal thoughts are not intrinsic to autism itself yet are so often present, in part as a cost of trying to blend into a world made for a different way of thinking and behaving. They are a cost of trying to live in a world which seems far less accepting of difference than it declares itself to be. They are also a cost of being perceived as not needing support or accommodations in contexts where autism is being masked.

Despite not wanting to stand out, there is a basic need to be ‘seen’ and understood, to be accepted and loved for our true selves. There is a need for safe people and places where the mask can be put down.

 

 

 

Myth busting the Nativity

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There are so many traditions and embellishments that over the years we have added to the Biblical account. Many are lovely, they can help us imagine the scene, some draw us in and bring it to life. Some however can give us the wrong idea about the story altogether. It’s really useful for us to have clarity about what’s there in the Bible, what we know and to separate out the add ons – not necessarily to ‘banish’ them but to know them as extras.

My girls need that clarity. It’s hard to have to unlearn something later and have to build trust again with the story itself, and the people who told it. Far better to be clear from the beginning (great with hindsight I know!).

Little Donkey is unfortunately never mentioned in the Biblical accounts. It’s true that we know with some certainty that having a donkey with you when you traveled at that time, in that place was common – if you were well off enough to have one. But the donkey would probably have been used to carry things not people routinely. So yes, it is lovely to imagine Mary having the assistance of a donkey for the really long journey on foot to Bethlehem whilst heavily pregnant – but we are having an educated guess. We don’t know for certain they had one with them.

Three Kings are a neatening up of the story. The Bible describes simply ‘some wise men from the East’. We have made the logical step of assuming they had wealth and social standing to be able to abandon what they were doing and set out on the long journey of discovery, and because of the expensive presents they brought. We’ve also neatly assumed three when writing carols and nativity plays – easy, one for each present. But it could have been a group all coming together to bring the three presents. They could have had an entourage of servants with them, there could have just been two out on an adventure together… we’re simply not told.

Stable round the back of the Inn Now this is a tricky one. Almost all Christmas cards show the nativity scene in a wooden stable that we in the west would recognize. It’s usually either at a small distance from the town or like a lean to against the Inn. Also I think we have translated the word ‘Inn’ looking at the story through western eyes, imagining perhaps an old fashioned public house taking in weary travelers with rooms for hire upstairs – and it’s full to bursting. In fact that kind of Inn was not the norm in the Middle East at that time. The culture had at it’s heart the expectation of hospitality. Every home would be ready to give it. Those who could afford to had a guest room set slightly apart from the busyness of their family life, maybe up on the flat roof, or perhaps just separated by a wall from the family living area which would most likely have been one room, bringing the precious animals in for the night to give warmth and security, and all sleeping within that family space with the animals. So it was probably not a wooden stable building that Mary and Joseph were offered for the night, but the chance to squeeze into someone’s family space – animals and all because all the guest rooms were already full. Not secluded, not quiet, not private as we perhaps have got used to picturing it. But yes, he was placed in the manger and yes he was born in with the animals that belonged to that household and I expect they were very glad of the warmth.

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Shepherds and wise men visit. We are used to telling the story all in one go – especially for children, and so we have grown accustomed to imagining the shepherds and wise men all arriving on that first night. But actually the Bible says that the wise men visited Jesus in Bethlehem much later, perhaps months later. We know Jesus was still young because Herod (otherwise known as Herod the Great – there were a few Herod’s in Biblical times) ordered all babies 2 years and under to be killed in the hope that he would remove this ‘new king’ the wise men had come to see but he was described as a ‘child with his mother’ when they saw him, not as a baby lying in a manger.

Another thing that can so easily get muddled is stars and angels – angels came to the shepherds and the star led the wise men.

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‘No crying he makes’ – no chance!!! How worrying would that have been for Mary. Babies need to cry, to take in that first big breath and to get fed when they are hungry and cleaned when they are dirty. It’s true Jesus was perfect, the Bible tells us he was without sin. But babies crying is not sinful it is necessary (Don’t ask me why we say ‘oh they were such a good baby’ when we mean they didn’t cry too much more than was convenient!! Maybe it harks back to the Victorian adage ‘children should be seen and not heard’). Yes, Mary would have been relieved to hear baby Jesus crying. And just to clarify he would have been a beautifully ordinary Bethlehem baby; olive skin, deep brown eyes, really dark hair – just like his Jewish, Middle Eastern Mum & Dad – he was really, truly human.

 

How can it be nearly December?? what happened in November

I’m not sure what happened to November this year!

It’s been fast and furious in our family this year. After the settling down into new patterns of school and college at the beginning of term, November has seen homework and assessments… and the planning and organizing of work experience placements which is daunting. This term A has been involved in the school musical again, ‘Legally Blonde’ so he’s been busy with rehearsals and this week with the shows. We went to see it together, really fun. (Came away with plenty to unravel and talk about with T afterwards though, maybe more of that in another blog.)

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Little Jaffsie enjoying a secret hideout in the garden

The kittens have reached the age to begin exploring the garden – though I am nervous, and closely supervise still. My worries not at all calmed by Jaffa discovering how to get up on the garage roof already. Padfoot is still being kept inside, his health has not been good since we’ve had him and there are ongoing investigations and tests with the vets. So for now it’s easier to monitor him in the house. It’s easy to make sure he gets tonnes of cuddles and fuss – he just laps it up. They are becoming a wonderful part of family life, Padfoot particularly seems to sense when to curl up near someone who needs calming, and Jaffa is a bundle of energy and curiosity which is a great motivator.

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helping with bathtime

All the usual stuff of course is still being shoehorned into each week – although sadly the washing Himalayas is actually a mountain range of epic proportions as I write despite my best efforts! And no matter how often I hoover, it always needs doing. And best not to even comment on the lack of tidiness – it’s overrated I reckon.

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Padfoot (aka paddington!) investigating our latest creation – a gingerbread house

We have had some together time of Friday evening – one week even a film we all watched together (quite often we divide into two groups for Friday chillin out) – and we made our kittens a gingerbread house at the same time, partly inspired by the film choice: ‘Charlie and the Chocolate Factory’. Little projects to occupy while we wait for the start help such a lot, and I’m on high alert all the time I find it near impossible these days to relax with a film so it kept me busy too! We’ve also ‘enjoyed’ some Friday family times shaped by meltdowns and struggle – so it’s good for me to sit and remember a good one.

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It’s been difficult to say goodbye to one of our lovely loyal guinea pigs this month. Custard Cream died very unexpectedly. And we miss him. We have planted a beautiful Hebe where he is buried. And the other half of the duo – Bourbon Biscuit – has been brought inside for the winter and is getting a lot of looking after from T. The two hamsters are fine – rather cheeky around the kittens, always popping out to stare at them, and trying to have a little nip if the kittens get too close. And the chickens, bless them, have been malting so look a bit scruffy and sorry for themselves but are fine.

Church life is gearing up for Christmas on top of all the usual busyness – I have yet to begin everything that needs doing for family Christmas of course, but somehow it seems to always come together in time (and what doesn’t, doesn’t matter). And schools have a lot of extras, Christmas Fairs, services, concerts, mufti days, discos… most weeks I struggle to keep up with what’s happening when and for whom!! I’ve also finally got round to filling in yet more forms to apply for carers allowance with the encouragement of a good friend. These things take such a lot of energy! Really thankful Andrew is a detail person, November has been a month and a half!