Easter holidays

 

When the school break happens leading up to Easter it’s a little tricky in our house!

A lot of patience was required from B, A & T as Andrew & I worked and prepared different services and events. A lot of patience was required by Andrew & I as the kids needed help relaxing, finding things to occupy themselves with and completing work.

In the end we began the holiday fortnight digging out a new pond in the back garden, with A designing and directing, me digging when I could and finishing other things when I could, and T with a trowel & paint brush checking for archaeological finds! Andrew mostly in the study or out for work, and B also working.

We found some fairly recent broken house tiles and the remains of a garden brick wall we think – and perhaps some pieces of a not-so-old plant pot! We also finished a pond.

As you can imagine it was a lesson in ‘I am simply not good enough, I can’t do all this without help!’ My patience has limits, each day has limited usable time, and lets face it washing clothes (and people!), cleaning, tidying, food (though Andrew handles that thankfully) and time together all still have to happen – sleep is apparently still fairly optional in our house but that’s another blog! Where does my help come from??!

I look to the hills!
Where will I find help?
It will come from the Lord,
who created the heavens
and the earth.

The Lord is your protector,
and he won’t go to sleep
or let you stumble.
The protector of Israel
doesn’t doze
or ever get drowsy.

The Lord is your protector,
there at your right side.

Psalm 121 (CEV)

There’s a limit to how far you can dig deep into your own resources, or at least that seems true in my experience. I’m finite. I’m not brilliant at everything. I’m tired – genuinely, mentally, physically and emotionally tired. I’m not enough many days. My faith in a faithful God is where I go for resources that go beyond my own; like walking uphill on a hot day and finding a well overflowing with cold pure water.

There’s no limit to how far you can dig deep into God’s heart finding love bigger, greater, stronger than you can ever imagine; patience that can outlast eternity; peace – real peace; forever new beginning forgiveness; mercy; being known, heard, understood; home…

 

It was I suppose a good context for Easter celebrations in the end. I went into Good Friday knowing I desperately needed help and forgiveness, knowing I couldn’t make it on my own. And found as if for the first time, as always, surprising mercy and love flowing from the heart of our full of life God.

 

 

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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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glossary of a diagnosis

It seems a lifetime ago that we began the long search for understanding – the pathways to a diagnosis. Ultimately as parents we long to deeply bond with and get to know our children, these wonderful, tiny, unique gifts. We long to understand so we can share life together, and provide well for their needs and watch them thrive and grow. Looking for a diagnosis for us was not a desire for a label, or to find the right ‘box’ – it was to understand and from that understanding to love the best we can, support the best we can, and protect the best we can.

There have been so many professions and medical terms that we have encountered in the process, it has been a little bewildering at times and definitely overwhelming sometimes. But I have definitely learnt a lot: here’s a taste of some of the phrases we have had to find out about!

  • ADOS – a set of observational assessments used to diagnose autism.
  • Autism – Also known as Autism Spectrum Condition, and Autism Spectrum Disorder. A condition with distinct areas of difference (neuro-divergence) from the norm (neuro-typical) in terms of thinking and imagination, social interaction and communication – in our house we refer to these differences as superpowers!

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.

These differences, along with differences in diagnostic approach, have resulted in a variety of terms being used to diagnose autistic people. Terms that have been used include autism, autism spectrum disorder (ASD), autism spectrum condition (ASC), atypical autism, classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and pathological demand avoidance (PDA). (from the national autistic society)

  • Alexithymia – inability to identify and describe your own emotions.
  • Dermatillomania – compulsive picking of skin.
  • DISCO – a lengthy questionnaire based diagnostic assessment.
  • Echolalia – a very precise copying of a word or phrase, from TV or a person. Sometimes for self-calming like stimming, sometimes for communication.
  • EHCP – Education & Health Care Plan, fairly new in the UK it’s aim is to be a joined up thinking, legal document of a child’s needs and support needed as they go through the education system.
  • Hypermobility – Hypermobile joints, but also for some hypermobile or stretchy skin, and joining tissues throughout the body with huge affects on health. Ehlers Danlos has found this is also a spectrum condition with sub-diagnostic terms. (Find out more about EDS here.)

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  • IEP – an Independent Education Plan, a system of setting goals and reviewing in a positive cycle with school.
  • Lanugo – fine downy hair growing on back or face when the body is in starvation mode. Not a term I want to have found out about really.
  • Meltdown – different from temper tantrums, connected to sensory information overload. I wrote more about it here.
  • One sided verbosity – not taking turns in conversation; rather talking at someone, using a lot of words.
  • …RefusalSchool Refusal; absolute paralysing panic about going to and being at school resulting in extreme avoidant behaviour (hiding, throwing, kicking, biting, running away). It can mean it is impossible to keep going to school for some. Food Refusal; panic about eating resulting in extreme avoidant behaviour. Can be connected to sensory hypersensitivity, neophobia (fear of new – normal phase in early childhood), and cognitive rigidity (connected to context, utensils, brand, look of the food). It means a restricted diet, and heaps of anxiety around food.
  • Selective mutism – I have written about this here; an inability to speak due to panic.
  • SEND – Special Educational Needs and Disabilities – a term used in schools where there will be a list of students identified as having SEND, and a SENCO (Special Educational Needs Coordinator) whose job is to coordinate support.
  • Sensory Processing – talking about the way our brain & body works to process the information it receives through the senses (taste, smell, sight, sounds, touch, knowing where our body is, understanding what the inside of our body is needing/doing) Just as each of us experiences pain differently, all the senses can be experienced differently. Sometimes someone can be hypersensitive to a particular type of sensory information, and/or hypo sensitive (not able to take in enough sensory feedback in a particular area).

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  • Sleep Hygiene – a term used to mean the good habits and routines that help our bodies get a good and easy night’s sleep. You know, no screens near to bedtime, ‘bath, story, bed’, have a calming bedroom, lights out etc. You can do courses in this too – yes been there done that!
  • Slow processing – talking about the speed your brain can take in information (either visual information, or audible) and respond to it.
  • Stimming – a repetitive movement, sound or word used to self regulate.
  • Webster-Stratton – a parenting philosophy and method. It’s not specific to autism, and you’d recognize it by it’s ‘time out’ method (1 min for every year old, no communication, stay on the step…). I completed basic and advanced levels at our local children’s center. But found the strategies didn’t work with us. I also found I wanted to adapt the time out process to include a sorry & forgiven stage. The part that was useful was the chance to see that we were getting lots of good parenting done – and that B’s reactions and behaviours were not typical.
  • 1,2,3 Magic – another parenting course, this time written by someone with autism in mind. Confusingly it uses the phrase ‘time out’ in a completely different way – a time to calm down and regulate. All about picking your battles, ‘contracts’, simple strategies, and tailoring rewards & consequences to your child.

I’m sure there are loads more that haven’t come to mind right now. And I’m certain there are heaps more still to encounter.

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Being thankful

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Autumn is here! A time for gathering in and taking stock. Plums, apples & whatever soft fruit and veg I have successfully grown. It’s a time of change and a time for re-grouping somehow I always feel. And of course a time of thankfulness. For us crunchy leaves also mean birthday season – so much to give thanks for. But it’s been a tough month to be honest… with so much newness everything seems to have taken a lot more energy than usual. So I’m looking for practical, calming activities to remind myself to give thanks and count all those blessings!

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Doodle thanks I can’t help but doodle my way through life, so this one wasn’t hard to find. Simple… paper and a pen, add a few things when you have a moment to sit down each day. Wouldn’t it be great to display a whole family’s set of doodle thanks. Or maybe start a big communal poster that everyone can add to throughout autumn!

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Jars of thanks: again, not a new idea. We have collected thanks in jars at other times too. It’s lovely to fill a jar together over a few weeks and then have a celebration get together and read them all out. A prayerful activity that grows gratitude in us. These jars were washed out plastic hot chocolate jars (quite astounding how many of these I accumulate!) decorated with foam stickers. We made them at our church’s monthly accessible service.

 

Contemplative colouring: a new design for our celebration of Harvest at church. Please follow the link to print out a copy and enjoy. The idea came to me as I was thinking about surviving those downpour moments in life, when you feel under a cloud and nothing is easy or going smoothly. As I chatted to God about how tough things felt we imagined this together, going one step further than ‘learning to dance in the rain’ we turned the umbrella over and began collecting the rain. I was reminded of the imagery of God’s blessing being poured out, being like rain on thirsty ground. So much rain that it is more than enough blessing for me and for me to share with others. Abundant blessing in the midst of the storms of life. It helps me to stop with an activity like this and deliberately become more aware of the blessings God pours into my life, it makes thankfulness bubble up again.

Books: There are so many good books out there that help us explore thankfulness, and get us talking about gratitude. ‘The world came to my place today’ by J Readman & L Roberts is great for thinking about how many other people and places have had a part in bringing what we need and want to our homes. The classic ‘Wonderful Earth!’ by N Butterworth & M Inkpen is one I go back to over and over again which helps us think about taking care of the gift of creation. Someone recently reminded me of Pollyanna by E H Porter, and the glad game. It’s not one we have so it’s now ordered and on its way! My own book ‘My Easter egg hunt’ explores all that Jesus has done for us and ends with an emphasis on our thankful response.

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Bible story: Looking at the story of the ten lepers who were healed by Jesus would be interesting. Mina has a lovely way of retelling the story over on Flame Creative Kids  It would be fun to go on and each make a chain of 10 paper people, and challenge ourselves to have said thank you 10 times by the end of the day. Or perhaps make some gingerbread men to help us remember.

Bunting: We have often made decorated paper bunting – I have hooks at the ready on one of the kitchen walls. Paper cut into triangles or flag shapes, newspaper, colourful plastic bags, pressed flowers – you get the idea…almost anything can look great as bunting. For thankfulness, at Harvest or Thanksgiving time how about leaves. Decorate with metallic sharpies or marker pens, writing or drawing some of the things we are thankful for. Then laminate them (may need to go through the laminator more than once) and they will keep their colour and hang really well. A hole punch at the top of each and as simple as that you have autumn thankful bunting.

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