Tired

When people ask ‘how are you?’ what do you reply?

‘Fine’

‘Good’

‘yep, how are you?’

One of my go-to replies is ‘head above water!’ But in the midst of the relentless, coming-at-me, complicated, tiring, purposeful, joyful, infuriating, beautiful life of ours there are times when I add in my head – ‘just’. You know that kind of tired when you’ve been treading water for so long the weary ache sets in, or you’ve been carrying something just slightly too heavy or awkward and suddenly you just have to put it down for a minute, when you’re running to catch up with someone and you’re nearly there – but not quite. That tired.

That tired that opens the door to the insecurities – ‘I can’t do this’, ‘I’m not good enough’, ‘what’s the point in trying’, ‘it won’t work’, ‘I’m failing’, ‘I always fail’, ‘I’m a failure, rubbish, why bother’, ‘nobody, invisible…’ – and a tiny voice in the midst of the clamor ‘ ‘help!’. Elijah tired.

When Elijah saw how things were, he ran for dear life to Beersheba, far in the south of Judah. He left his young servant there and then went on into the desert another day’s journey. He came to a lone broom bush and collapsed in its shade, wanting in the worst way to be done with it all—to just die: “Enough of this, God! Take my life—I’m ready to join my ancestors in the grave!” Exhausted, he fell asleep under the lone broom bush.

Suddenly an angel shook him awake and said, “Get up and eat!”

He looked around and, to his surprise, right by his head were a loaf of bread baked on some coals and a jug of water. He ate the meal and went back to sleep.

The angel of God came back, shook him awake again, and said, “Get up and eat some more—you’ve got a long journey ahead of you.”

8-9 He got up, ate and drank his fill, and set out. Nourished by that meal, he walked forty days and nights, all the way to the mountain of God, to Horeb. When he got there, he crawled into a cave and went to sleep.

Then the word of God came to him: “So Elijah, what are you doing here?” (1 Kings 19:3-9 MSG)

I come back to this passage over and over again. So human. So real. And God, our Father so gentle and purposeful. ‘There’s still a journey to make, eat, sleep, come on keep following – I’m here with you – one thing at a time Elijah’. We are seen, known by name, loved and sent with purpose & company. Time to catch a breath, eat & sleep the best I can and keep on stepping out with God.

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understanding personal space

 

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excuse me – still here!

So how on earth do you begin to learn all about personal space, and respecting other peoples?? Everyone has a boundary at a slightly different distance. Relationship determines subtle yet important differences for each context. Different cultures have unspoken yet definite socially acceptable ‘rules’ about it. It’s not something that gets openly explained very often, yet we’re expected to get it right – every time, every social gathering, family meal, sharing of the peace!

For most of us it is learnt when we’re very young, one of those things that gets ‘picked up’ simply by being in relationships and experiencing a variety of social contexts. Learnt through picking up subtle body language cues; inference gleaned through experience; making connections between a variety of moments of cause and effect, carefully and correctly interpreted in the midst of social interaction. It’s a wonder it’s ever possible to get this right!

So what about those of us who don’t learn by inference? Or easily ‘read between the lines’? What if body language cues are a language yet to be learnt? And what if the way you see things leads to joining up the dots between cause and effect differently from everyone else, and connections are made therefore to different facts, different variables in previous moments of social interaction? How are the rules of socially acceptable interaction with others, understanding their personal space boundaries learnt??

I suppose the answer is, differently; from a different perspective; with an often refreshingly different approach and an analytical honesty that isn’t afraid of questioning a cultural norm.

I suppose the answer is also, painfully. Others don’t respond kindly to people seemingly ‘rocking the boat’, and openly questioning cultural norms – especially when expecting someone to be ‘old enough to know better’. Doing life differently can lead to feeling like an outsider or feeling disliked and unaccepted.

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missing Curly Grandad: doing grief together

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Some days it can feel like it has been a lifetime since my Dad died suddenly, other days it could have been yesterday. Grief is a funny thing.

My children have experienced close relatives dying – perhaps more than I thought they might when they were young. B & A were little when Dad died, and almost straight afterwards my Grandad – Dad’s Dad – also died. Before that we had also experienced the loss of other loved members of our extended family.

There is no instruction manual for grief. It is a complex bundle of emotions; sadness, emptiness, anger, confusion, numbness, fear, love, acceptance, hope, thankfulness… and of course family don’t experience these emotions in sync with each other, there is no ‘order’ to feel them in. It can hit in waves, it can leave you feeling guilty on days which feel ‘normal’. It is difficult to navigate for yourself, and difficult to walk alongside others. As a Mum all I could do was walk gently with determination, loving my husband and children as we each waded through different reactions and emotions. Praying for wisdom and strength to face it together, and to share our hope in Jesus with B & A.

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I am certain it was important that we were open with our children about their Curly Grandad (he was the Grandad with curly hair of course), ready to talk about what we all missed without him there. I think it is also important to be open to sharing how we have felt at different times or at different occasions – not always the easiest for super-introvert-me. But I am convinced that talking together openly has been important in walking through this together.

..’children can empathise with and show compassion for peers that have been bereaved. Children aged between five and ten often copy the coping mechanisms that they observe in bereaved adults and they may try to disguise their emotions in an attempt to protect the bereaved adult. The bereaved child can sometimes feel that they need permission to show their emotions and talk about their feelings.

The important thing is to let them do this. Avoid remarks such as, “Come on be a big brave girl for mummy” or “Big boys don’t cry”, such comments however well meant can make children feel they need to hide their feelings or that what they are feeling is wrong. This can cause complications as the bereaved child develops.’ (Cruse)

There were also a multitude of questions that my children had – and perhaps still do. Being as young as he was, A found it difficult to understand the finality of death and for a number of days was looking for Curly Grandad and asking where he was. Strangely T, even though she was born a number of years after Dad died, has gone through very similar stages with us and has also brought her questions about death and how it works. It’s not at all easy to answer questions that need factual detail when you yourself are struggling to come to terms with your loved one’s death. How I wish I could have found a reference book that had all the answers printed out for me at that time. How I wish we could have thought to talk about these topics at a time when we weren’t reeling!

 ..’it is important that the cause of death, the funeral and burial process and what happens to the deceased person’s body are explained in a factual and age appropriate manner to the bereaved child. Children will ask many questions and may want to know intricate details pertaining to the death and decomposition of the body. Again, it is vital that children have such details explained to them clearly so that they understand.’ (Cruse)

It was out of the experience of the first few weeks after Dad died that I began to write. As a Mum of my two very curious, needing detail children, I was looking for the right words, the right way to explain and open up the Bible with them. It was important to find ways to share our faith, our hope because of Jesus about life and death with them. So ‘My Curly Grandad’ was written, partly for them, partly an expression of my own grief and partly for Mums like me needing help finding words and a way in. In writing down their experiences and questions, and weaving Jesus’ good news throughout the story I pray that it spoke to them where they were. I pray now, as it is finally published, that it will speak into other family’s lives and hearts as they walk together in faith, love and grief.

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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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.