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.

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logistics of a short break

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Sunny weather, beautiful home-cooked food, the sea, sand and sky – what more could we need! We managed to get away for a few days during the school break to spend some time with family.

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It was beautiful to get to the sea. As T commented it is a place which can make you feel ‘free’; on the beach she had space; to talk, sing, collect, dance, watch, notice, feel. (Of course, sensory overload is never far away so short doses required!)

Getting away for a break is tiring though (Oh the irony).

Routines are very different. As a guest you don’t want to call the shots about what and when meals will be, and the unknowing brings its own anxieties when you already live with anxieties about eating. Our animals and familiar surroundings are missed terribly even for a few days. New surroundings means unfamiliar smells, textures, sounds all of which can be tiring to adjust to and difficult to relax around. Family time inevitably includes trying to balance different needs, some needing and wanting to see new places and explore new experiences while others need and want to do the same outings or watch the same movies as last time we visited.

Getting away involves major transitions; leaving and arriving and travelling in-between – twice! And it’s logistically challenging. Choosing outfits in advance, trying to wisely pack the right extras (toys, books, sensory fiddles etc) to keep things calm in all the little gaps, medications (forgot my own this time which didn’t help anything) and those essentials without which the challenge of the new cannot be faced. Making sure things back at base are ready enough for the return.

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Here are my tips for keeping short breaks as smooth sailing as possible in the midst of all the challenges ASC, PDA & SPD throw up…

  • Don’t give in to the embarrassment of taking too much luggage. I struggle with this one even when we are staying with family. Even a few days requires a lot of stuff for us. But the times we have tried to cut things out we have regretted it. If the dolls need suitcases too so be it!
  • Screens come too. If no internet access then favourite programmes must be downloaded in advance. Check favourite games/apps to see if they need internet access, and if so find one that doesn’t and try and introduce it well in advance of the trip.
  • pack some snacks and nibbles (or even a tin or 2) that will almost always be eaten to have on standby. Just knowing they are there can help reduce anxiety.
  • Do some things that you always do at that place so that not everything is new every visit.
  • We are National Trust members which has been so helpful for us over the years. Each new place has a very similar feel to it, and a similar set of components – a house to look round, a garden to ramble through, a play area, a cafe/picnic areas and toilets. So new places can be explored whilst still feeling manageable. Also being members (paying a yearly fee) means we don’t stress if an outing only lasts a short time. There is no pressure to make the day last if it’s not working for whatever reason.
  • Try not to forget essential medication (note to self!!).
  • Take timers/visual timetables etc if you are using them regularly at home. Don’t expect it all to feel easier.
  • Pack sensory toys and fidgets.
  • Anything that makes bedtime feel familiar in a new place needs to come too. Is it a particular blanket, their own pillowcase, a cuddly toy that’s always there, their own clock to hear the same ticking as usual, using the very same devotions or prayer – whatever it is, work it out, pack it and still prepare for some even more sleepless nights than usual.
  • Don’t forget to take lots of pics; stop and take a breath every now and then to remind yourself to enjoy it all and notice all the good bits (after all dancing on the beach is not to be missed!).
  • And when you get home, take a moment to be aware of the many things that happen much more smoothly because of the home and family routine you help put in place – you might need to remind yourself in a few days time!

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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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Snowdrop moments: unexpected breakthroughs

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Love, love, love snowdrops don’t you. Little nuggets of resilience and pioneering spirit. Humble simple beauty when it’s least expected and looked for, when everything is cold & hard, and just when it’s needed to lift the spirits and urge us forward. I carefully divided and replanted some clumps of bulbs last autumn, and am enjoying watching them fight their way into flower in their new homes around the garden. For me they are a reminder of the fact that God is in the business of making everything new – and that begins now, in the unexpected; against the odds; tenacious; fragile and simple yet miraculously powerful breakthroughs that God allows to spring up ready to be found and rejoiced in. They remind me to rejoice with God in the small significant ‘newnesses’ that happen in our family life.

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A sewing birthday party attended despite huge anxiety and thoroughly enjoyed. Huge sense of achievement. The photo shows fluffy the bear, designed and sewed by T alongside a great group of girls from her class.

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T had homework this week to cook a healthy tea for her family!

Andrew helped, I provided emotional support! And T cooked chicken pasta. Exhausting.

Hidden in this amazing event was an equally amazing moment as T sat with B & A and a friend at the kitchen table and all ate some – a new recipe tried by everyone – don’t try & tell me God doesn’t break into our everyday, that’s definitely miraculous.

 

This morning A allowed T to sit in his room, and they peacefully ate breakfast alongside each other. (I know!!!)

College work, a very new way of presenting and handing in, is being completed.

We have had a visit from a good friend, who helps us in ways she probably doesn’t realize. And, in the same few days another friend came round so that Andrew & I could go out for a meal. I know, sounds so ordinary yet never ever taken for granted.

img_20190122_102331_045I am pressing on with the editing of another book – the one that sparked all the others – about time I focused on it again and got it ready to share with you, think you’re going to love it.

Last week I also travelled (not far, but even so, out of my little comfort zone) to help deliver a disability (or diffability as I like to think of it) awareness training session for the diocese and had the chance to share a bit about ‘sense of space’, our accessible worship at church and our experience. And we juggled school pick ups successfully between us.

All of these small, significant, moments – snowdrop moments if you like – can be moments to recognize God is at work in our midst. He is drawing us forward, revealing his faithfulness, his humour, his joy in who he has created each of us to be; leading us into his life – his overflowing, never ending aliveness that he pours into our lives. Tough circumstances, worries, lack of sleep, diffability; none of it stops God in his busyness of recreating. His aliveness is powerful enough to break through the hardest, coldest places of our lives in ways unexpected; against the odds; tenacious; fragile yet powerful.

 

 

Sugar free January??? No chance

Everything on my news feeds at the moment is about clean eating, getting fit, ‘new year new you’, sugar free, dry January. I read them with my chocolate bar open next to me, and take them with a pinch of salt! There’s no chance, not for me this year! With sleep still a constant battle, and worries every which way I turn these types of resolutions are a battle I can’t take on (even if I wanted to – and actually I don’t, chocolate & I are good friends!). I haven’t made any resolutions at all really. I guess I’m in survival mode most of the time, taking each day (or on a bad day, each 5 mins) at a time.

If I did sit here for a moment (my first moment like this in a while, Christmas has been (mostly) wonderfully full on as usual) with time to reflect and dream what would my resolutions be I wonder?

There are many things I would like to improve in family life, or sort out in the home. Yes my diet (and over reliance on chocolate) does need an overhaul – despite Andrew’s best efforts to get me eating good, home cooked, balanced meals in the evenings. And my hair & skin need a fairy godmother! But are these the things I want to resolve to focus on this year? Probably not.

I would love to remember more than I forget that God’s presence is with me – all the time, in every minute of the day & night. I believe he’s with me; Emmanuel – God dwelling with us; yet somehow in the middle of family life’s complicated and stressful day to day it’s something that seems to slip my mind and I don’t want it to! I believe his presence is with me and that I don’t have to work hard, or shout loudly to conjure it up. It’s his promise to me as someone who trusts and loves him. He’s here, right here, closer to me than the breath I take in. His loving, under-girding, kind, powerful, gentle, wise, leading presence is here ready to help and save, comfort and restore.

Oh yes, people of Zion, citizens of Jerusalem, your time of tears is over. Cry for help and you’ll find it’s grace and more grace. The moment he hears, he’ll answer. Just as the Master kept you alive during the hard times, he’ll keep your teacher alive and present among you. Your teacher will be right there, local and on the job, urging you on whenever you wander left or right: “This is the right road. Walk down this road.” (Isaiah 30:21 The Message)

I’m an open book to you;
even from a distance, you know what I’m thinking.
You know when I leave and when I get back;
I’m never out of your sight.
You know everything I’m going to say
before I start the first sentence.
I look behind me and you’re there,
then up ahead and you’re there, too—
your reassuring presence, coming and going.
This is too much, too wonderful—
I can’t take it all in! (Psalm 139:1-6 The Message)

“I’m telling you these things while I’m still living with you. The Friend, the Holy Spirit whom the Father will send at my request, will make everything plain to you. He will remind you of all the things I have told you. I’m leaving you well and whole. That’s my parting gift to you. Peace. I don’t leave you the way you’re used to being left—feeling abandoned, bereft. So don’t be upset. Don’t be distraught. (John 14:26 The Message)

Maybe I’ll draw out these verses and put them in places I will see as I go about my everyday here in this house.

I need reminding, I’ve been far too good at forgetting, I am not alone.

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Looking at it it seems a rather simple resolution. But I have a feeling that if I were to succeed it could change pretty much everything else – my perspective, my responses, my feelings. So my prayer for myself for 2019 is simply this, ‘my Father God, open my eyes and heart up to your presence even more as we walk through each day of this new year together…’