counting chickenpox

Ah well, what would a half term holiday be without chickenpox! I don’t know what we would have done without the constant need to count spots (‘pox’ as T prefers to call them), the application of creams and lotions, the extra bath times to try and keep the itching manageable – not to mention the all night itching entertainment!

20180222_122026

When A had chickenpox for the second time he was in reception class, and we made a chart and recorded the number of spots everyday and how many of those were new. Then his class teacher would get a phone call with the new numbers each day – a whole class project! Somehow the counting made us feel a little more in control.

 

T had heard this tale told many times so of course a chart had to be drawn up. She went the extra mile and wanted different parts of the body counted separately and recorded to see the spread. Interestingly she saw that it seemed to spread down one whole side of her body and then concentrate on the other side. We have seen how the number of new spots was really big for the first three days and has then (thankfully) subsided getting fewer every day since. Yesterday we ‘let her out’ for the first time since getting to the holiday apartment we are staying in, and we had some fresh air and a short walk to the shop for some more distractions.

20180222_110623.jpg

Being kept inside, and not at home with all the usual toys and ‘things to do’ has involved quite a bit of energy and resourcefulness. Baking, drawing, jigsaws, magazines, minecraft, sims, making paper dolls and playing hide and seek with them; making a plastic drink bottle doll using colourful plastic shopping bags to cut clothes out of. People watching from the window, bird counting in the trees near the window. We have made pulley systems to move small vets and their animals up the mountain (stairs) and back… and up and back… We have crocheted little jackets and scarfs for the little family of rabbits she brought with her, and read (and bought more supplies) lots of fairy books. We have taught T how to play happy families, and have had a go at a game we picked up here called ‘WoBally’ which has proved very funny.

Last night as T was yet again very distressed getting off to sleep she was saying in desperation she didn’t even know a big enough number to be able to count her ‘horrible pox’. Swiftly followed by ‘What is the biggest number Mummy?’, so we had a discussion about how no matter what new name for huge numbers we could ever come up with we could always then add 1 more! In our reading last night we were allowed to explore how huge numbers can be and how we cannot even begin to feel in charge when it comes to knowing the grains of sand, or the number of stars in the universe – but that God does! And what’s even more amazing is that the number of times he thinks of us in love and kindness is an even greater number!! What an encouragement..

20180222_122835.jpg

Pleased to say she’s on the mend… though she is tired out and the spots are determined to stay itchy as they scab over and heal. So for the last couple of days we are hoping to all get out together to explore, walk by the river, visit a museum and have a film night before we head back home.

20180222_111257.jpg

Advertisements

looking for joy

20180206_083953

Looking for joy can sometimes feel like looking for signs of spring in winter, or signs of new life in the desert. Anxiety, depression, stress, sleep deprivation, lack of self care, niggly illnesses all add up to a kind of numb weariness that continually ebbs and flows. A physiological vicious cycle.

Lent is good – it’s not just me taking time to visit the desert and acknowledge that desert times are a part of faith-filled living. 

Some weeks I ask myself what does joy look like – I often think it must look different to me than for others. I struggle with it to be honest. It seems over-demanding, too energetic, in my face; too bright. How can a word, a concept evoke that kind of avoidance within me? How can such a tiny word make me feel so inadequate, so full of failure. As a Christian I know I’m supposed to have an endless supply of joy, yet I am not good at taking hold of it or holding onto it, or perhaps sometimes even spotting it in the first place, and other times fear gets in the way of even going near it – whatever it is!

 ….the Lord made the heavens.

 Splendor and majesty are before him;

strength and joy are in his dwelling place.

Ascribe to the Lord, all you families of nations,
    ascribe to the Lord glory and strength. (1 Chronicles 16:26-28 NIV)

The one definition of joy that I have felt I can grab hold of I came across on social media of all places: ‘Joy is peace dancing’.

Peace that passes understanding, that does not depend on my circumstances or ability to achieve it. Peace that is a gift from God, the gift of being accepted and belonging with God who can carry the weight of the universe – and me – in the palm of his hand. Whose love is stronger than death itself, who can handle all that life can throw at me. That peace – dancing. That may not look like the joy that the world talks about but to me that resonates deeply. That joy is moments of quiet rest in the safety of the hollow of his hand, looking into his face and smiling back, and letting my heart dance, free in his presence. Here joy is not a demand, or something to find the energy to achieve, it’s simply present and tangible and without expectations. And maybe from here I can get more practiced at spotting this joy as it spills out of God’s hand into our lives – he is a God of miracles after all!

 

20180213_190137

drawing by T this week which showed me joy

“May we shout for joy over your victory and lift up our banners in the name of our God.” (Psalm 20:5)

Looking for joy in the barren places does have it’s advantages – when I spot it, grab it and hold on for dear life before it slips away – it holds a beauty and God-giveness precisely because it is so very unexpected. Like the wonder of crocuses and snowdrops standing tall and confident of spring despite the snow and howling wind.

 

lent is nearly here

It hardly seems a minute since I managed to get Christmas decorations down and packed back away, and here we are, Lent begins next week!

So I’m taking the opportunity of blogging about such things as faith habits at home as my excuse to spend some time enjoying pinterest – should I say, researching – looking for the many great ideas out there that other families have tried.

(By the way I collect together the ideas I find about faith at home on my pinterest board)

Ideas that have caught my eye this year are:

How beautiful!!  It's a visual walk through the days of lent to Easter.

 

This visual walk through lent posted by ‘rhythm of the home’

I wondered if it could also be made together as a family throughout lent, taking turns to add a thumb print (or even a painty foot print) each day.

‘Catholic Icing’ have a printable lenten calendar that could be coloured in each day. A simple visual countdown is really helpful for breaking lent down into something that can be imagined, and the end can be ‘in sight’.

‘Flame Creative Kids’  has a whole list of wonderful, creative, prayer and thinking activities including this lovely stained glass window design.

 ‘GodVenture’ ‘s new book takes you through lent looking at the story of Lazarus with stickers, story, prayers.

‘Dunlap Love’ directs me to a way of doing a lenten tree – like a Jesse tree – and has some free printable ornaments to laminate and hang up each day as a Bible verse is read.

And also ‘Wee Little Miracles’ tells me how to go about making and using this beautiful spiral to the cross with cardboard, burlap and modelling clay. She is planning to take turns to place a stone into a ‘cup’ each day to mark the journey through lent.

 

 

I will also be posting weekly ideas, practical and crafty and with free printables inspired by my book ‘My Easter Egg Hunt’ which explores the meaning of Good Friday. They’ll be posted on my clearly nurturing publishing website.

There are so many lovely ideas for creating sacred space, and a pattern of prayer and Bible reading together through lent. Now the hard bit is deciding which we will try. I am imagining we will combine a reflective habit like one of these with some intentional blessing of others.

Maybe joining in with the 40 acts challenge or by collecting food for the local foodbank, or similar project adding some items every day as we pray (we have a project our church supports that works alongside asylum seekers and refugees, and there are others too who would welcome donations or things or of time).

Lent is a time to focus together with God, to reflect on our own faith and trust in him, and his beyond words grace poured over us. A time to look at the world around us again but with eyes heightened and alert, and with hearts stirred by prayer and renewed sense of purpose. (And my prayer is that in the middle of our unpredictable and rather complicated family life there will be a thread of all those hopes running through our lives together in the run up to celebrating Easter, because God is in our midst)

2016-03-26 13.59.41

 

 

 

friends

2016-05-16 16.38.00

“She can’t be autistic, she has friends”…. (anon)

I must have heard this a hundred times! The truth is autistic people do have friends, want friendship and really value their friends. It’s also true that some of what makes up being a good friend and enjoying & understanding a friendship doesn’t come easily – in a sense that’s not different than it is for anyone, but the things that are difficult if you are autistic are there in every element of friendship everyday so it can get a bit complicated, exhausting and overwhelming at times it seems to me.

‘Once you have made friends, you have to work on your friendship. This is because you’re only going to benefit from a friendship .. if you continue to be friends with that person. Therefore, you need to use some friendship maintenance skills to keep the friendship going.

An analogy that might be helpful for this is learning to play a musical instrument … once you have mastered a skill such as playing a particular piece of music, you have to practice regularly to keep being  able to play that piece of music so that you maintain the skill in your memory’  (The independent woman’s handbook for super safe living on the autistic spectrum, Robyn Steward. p69)

A lot of the basic maintenance skills are things most people take for granted, most of us don’t remember having to consciously learn them, we are sometimes not even aware of them – they just happen when we are around our friends. Things like reading body language, hearing tone of voice changes, keeping up with the conversation, turn taking in conversation, noticing and understanding other people’s boundaries, likes and dislikes. These are all things that most autistic people have to consciously learn, and because most people aren’t aware how they learnt these skills it can be a very tough job to find someone to teach them!

Ongoing, ordinary friendship relies on these skills. For example, friends respond to each other’s feelings to be quick to comfort, say sorry or to share in their excitement, but people don’t express their feelings clearly and directly very often – more often through tone of voice, and body language alongside behaviour, and of course a reliance on a common understanding of how feelings are expressed in our culture, so there are a lot of different skills needed to be able to ‘see and hear’ a friends feelings in order to be able to be a good friend in response. If these skills have to be consciously learnt (and they’re not an exact science!) then this process takes more time, and is something that can go wrong quite quickly – and then be difficult to unravel and mend.

2016-04-04 12.15.51

Conversation is another ordinary part of friendship. But it is made more difficult if most people in a conversation seem to just know when it’s their turn to join in but to you it seems impossible to work out. The average way of learning turn taking in conversation is by noticing those raised eyebrow moments from parents or aunties when we were very small and just starting out; hearing the clearing of the throat of a grandparent and noticing the intent of it towards you, inferring it’s meaning as a reprimand or warning to wait. If you are autistic your brain just doesn’t learn by inference, and of course we’re also back to the not hearing tone of voice changes, not looking at people’s faces in the same way, not reading body language instinctively. These differences in learning mean that sometimes autistic people can dominate conversations unaware of other’s lack of interest or annoyance which can appear unfeeling or selfish, other autistic people sometimes never join in conversations in a group but wait to speak to just one person at a time which can appear very shy, withdrawn or uninterested.

‘Many people struggle to pick up on subtle social cues such as someone not sounding interested.For people on the autistic spectrum, this could be because you are monotropic (able to concentrate on only one thing at a time). Also, your sensory system may be mono-channel (concentrating on one sense at a time).’

(The independent woman’s handbook for super safe living on the autistic spectrum, Robyn Steward. p71)

It’s also very true that the context of any conversation makes a huge difference to how well these skills can be used even when they have been thought about and learnt. Many people who are autistic also have SPD (sensory processing disorder – or difference) which can mean they are vulnerable to being more quickly overwhelmed and so distracted by the environment around them – hearing all sounds equally rather than filtering out the ones not needed right now for example, or being in pain from the light that doesn’t seem too bright for anyone but you. Dealing with sensory overload (literally an overload of neuro-pathways) is not at all easy to do and still navigate a conversation well.

20170517_051602

One of the other different thing I’m noticing is just how difficult it can be in friendships when you are a very focused thinker. Many autistic people have very specific areas of intense interest which can hold their attention for an age, and at times can dominate their conversations, their choices in play, their imaginary world – at times pretty much everything. This can sometimes be difficult to bring into a friendship group, where other people have other interests and it is cultural for good friends to spend time enjoying and taking an interest in each other’s hobbies or interests. Again, a skill to learn. Sometimes it is even that the friendship itself is the intense interest and then it can get difficult when things change, or when new friends are also included, or when the friend’s boundaries over how often they feel comfortable about getting together don’t match. It can also be difficult in these moment to accept and understand that some people want lots of close friends.

Friendship is something I assume every parent worries over, and prays about for their children. For me it is also something I am constantly trying to dissect and understand better so I can anticipate hazards ahead and get teaching, showing and supporting the use of friendship maintenance skills. Because friends really matter, and we really value them.

it takes a long time to grow an old friend

 

 

Review: ‘Indescribable 100 devotions about God and science’

‘Indescribable 100 devotions about God and science’ by Louie Giglio is a new book of devotions all with a scientific focus. When I saw it advertised I pre-ordered I was so excited at the thought of devotions that would overlap with a special interest, and I hoped that being focused on science it might also be full of facts and details which would also appeal.

20180101_225100

We began reading, B & I, on New Years’ Day, and I have not been disappointed! Each day has been packed with interest grabbing facts and insights about our world – the main topics focused in on are space, earth, animals, and people (they are spread about through the devotions if you follow day by day but at the front is a contents which also groups them into these categories so you could read by topic if preferred). There is so much detail in each thought that we have even come across facts B didn’t already know (no point in me adding that there are lots & lots I don’t know, take that as read! – but I have been able to follow).

Each devotion must take about 2 or 3 minutes to read and include the Bible verse, and there are drawn pictures and photographs (next to bonus facts to think more about) on each page, and a prayer you can use together. I think it would be accessible for confident readers to use alone, but we are enjoying them together and mostly finishing with our own prayers – because we have a set way that has evolved over time.

Although I have started reading with B I think it will also appeal to T (now 7) so when the moment is right I may tentatively see if I can build it into my bedtime routine with her & see what she thinks. But I love it!

20170929_231015

Other devotions we have loved:

‘Thoughts to make your heart sing’ by Sally Lloyd Jones

‘God and me’ by Penny Boshoff was great when B & A were little, and still dipped into by T as she loves the pictures (all photos of real children doing interesting things!)

‘Children can you hear me’ by Brad Jersak (I talk about this book here)

‘Comfort in the darkness’ by Rachel Turner (read our review here)

And not forgetting ‘Our family GodVenture’ by Victoria Beech which we are still enjoying on Fridays when we have a ‘sabbath’ meal together.

And ‘Topz’ books (produced by CWR) have also been enjoyed over the years – we’re not there with T yet, they were great when A wanted something to get stuck into on his own.

Would love to know your recommendations, are you enjoying any particular Bible devotions/thoughts for the day at the moment? .. leave suggestions in the comments..