special interests

 

Some call it obsession, some think it narrow

but in our family we love special interests;

with intensity, with all we’ve got

we focus, we explore, we research and find out.

Our knowledge creates a safe space in which we can curl up and rest.

Familiar and known.

Digging and drawing,

collecting and cuddling, playing and gaming,

gather the facts, devour the info.

It is expertise we can share.

Breathe it all in, get the sand between your toes,

the clarity of focus takes experience deep, deep, deeper;

you can taste it, smell it, know it.

It’s all or nothing,

all in, or not at all.

That’s the wonder and beauty of special interests.

And in the pursuit we see

fierce loyalty, tenacity against the odds;

a single-mindedness that isn’t swayed.

Peer pressure can’t touch this.

So yes, some may think it narrow, some think we obsess.

I guess some may even find it boring,

but in this family we love special interests.

In them we see echoes of a Creator, a Father’s heartbeat.

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seeing in colour: how do we experience life in all its fullness?

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Jesus told this simple story, but they had no idea what he was talking about. So he tried again. “I’ll be explicit, then. I am the Gate for the sheep. All those others are up to no good—sheep stealers, every one of them. But the sheep didn’t listen to them. I am the Gate. Anyone who goes through me will be cared for—will freely go in and out, and find pasture. A thief is only there to steal and kill and destroy. I came so they can have real and eternal life, more and better life than they ever dreamed of. (John 10:10 MSG)

“It’s so sad Mummy”, “what is T?” – “they don’t see all the colours.”

We were chatting about our two lovely, cuddly kittens. We’ve been busy in T’s bedroom, new curtains, some bigger shelves and a good sort out. We’ve also been making a house together for her dolls, and have so enjoyed the colours and fabrics and papers we have been playing with. And Jaffa loves it as you can see – on this visit to the house he found the bedroom and decided to settle in for a nap tucked in by T, too cute!

Cats apparently only see in black and white, or only a very limited range anyway. Of course we talked about how they had only ever seen things this way which meant that the shades and densities of black and white and all in-between were what they were used to, they could still have favourites and enjoy the differences (Jaffa seems to love pink for example, but we don’t know that pink looks the same to him as it does to us).

Recently someone reminded me of John 10:10 – life in all its fullness, life in abundance is what Jesus gives us as he comes into our lives. And I thought back to this little conversation. Spiritually we have got so used to seeing only in black and white, and we are very comfortable with that. But God sees in technicolour! And in Jesus it is as if he opens our eyes to catch glimpses – not too much or we’d be overwhelmed – of the dazzling colours of real, full, life. I expect we each get to see and experience different glimpses too. The abundant life of God splashes into our lives in different places and in different ways. One of my go-to phrases about my life as a disciple is that ‘my joy looks different from yours’ (or swap in peace, or hope etc). I don’t mean that God’s truth is relative – not at all – I guess I’m meaning that the expression of it, my experience of it as it splashes into and through my life here on earth may be very different from yours. We are unique, and God’s revelation of himself is personal at the same time as being the same truth for all, across all time and cultures.

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We each see and experience in a different way. Some much more differently than most. My girls see and experience the world around them differently from most and sometimes I wonder if that means they see very different shades, depths and brightness in the colourful splashes of God’s abundant life that break into ours.

Wouldn’t it be wonderful to understand more of what they see, what their faith experience feels like? Wish I could be a fly on the wall. But it’s their personal friendship with God, their story with him. I only walk alongside, hoping to encourage and enable. But I’m also walking alongside ready to listen and learn, and rejoice when they share with me. I am learning (still!) to listen when T starts to sing in the garden or as we walk – it’s in these songs that she often describes her friendship with God, or her wonder at him and all he’s made. When I chat with B about a faith experience of my own, I’m learning to be braver and gently ask how she sees it, or if she’s experienced anything similar – and am learning to wait for her answer (which may come days later!). When I am planning something for a church group I’m enjoying asking B, A & T what they think, what they would choose to do to explain, or what craft or activity it makes them think about. Drawing and doodling together continues to be a great way of talking and sharing faith experiences together too.

What are the times your kids are able to share an insight about their faith?

In what ways does God’s abundant life splash it’s colour into your family life?

 

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.