is it a paddy, is it a tantrum, no it’s super-meltdown: things I need you to know about meltdowns

The thing about sensory processing differences is that they are there all the time, sensory cravings alongside sensory defensiveness in a world full of light, noise, movement and touch means it can be surprisingly easy to get overwhelmed. The thing about autsitic masking (think swan with crazy fast, unseen feet working so hard to camouflage and do the right thing even when it feels like you are an alien in a world where the social expectations and rules are always just out of reach) is that it takes so much energy, so much focus to survive or overcome worry after worry just to make it through the day. So it doesn’t need much of a niggle, misunderstanding, or unexpected moment to be knocked off balance and all the bottled up worries and stress to burst out. Meltdowns happen. They are inconvenient, stressful, messy, noisy, attract unwanted attention, are painful and exhausting – for all of us, public or not.

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With a tantrum or angry outburst there are words, frustration and a battle for control. As a mum I know to reach for clear boundaries, definite options to move forward and get ready in the back of my mind for a suitable consequence if calm is not restored (for B when she was younger the consequence that worked best in these situations was her doll being put out of reach for the rest of the day… these days it’s much more likely to be screen time that gets affected if one of them simply refuses to stop and calm down.)

But a meltdown is entirely different. For us meltdowns are non-verbal, mute – there is sometimes shouting and screaming but there is no verbal communication. And there won’t be until a long time after the meltdown subsides and things are becoming regulated again. Meltdowns are not a choice, not consciously attention seeking – or a tool being used in a battle for control. A meltdown is out of control for the one experiencing it. As a mum I know this is not the time for negotiation, talking it out, or reaching for clear boundaries. My job is to keep things safe, and be there.

In a meltdown what I see when I stop and look into my child’s eyes is not frustration and willful battling but fear and the kind of rage that fear can be. It’s a panic attack. Their whole body is involved, flooded with adrenaline for fight or flight. The heart is pounding, their arms and legs lashing out in defensive attack. Things can be thrown as if in self defense, they can hide tight in an impenetrable ball, they can run as if their life depends on it. It is as if everything – every sound, touch, thought, feeling is coming at them. They are overwhelmed. They cannot find the ground. It is terrifying, exhausting. As a mum I know this is not the time for discipline, or consequences. My job is only to stay close, keeping them safe.

The aftermath of a meltdown takes a long time to go through. Rest has to happen, some withdrawal from demands. There is a need to feel secure and grounded again, either through a tight cuddle (T needs this often) or a familiar safe space and activity (usually a repetitive one). There will be no words for a long time. Often there is little to no recollection of the details of the meltdown at all, just sadness and regret at the thought that they might have hurt us. As a mum all I want to do now is give reassurance and be an undemanding loving, accepting presence.

It is often difficult to pinpoint the triggers of the meltdown. With a tantrum it is often much clearer what the whole thing is about. With a meltdown this isn’t always the case. With hindsight Andrew & I can work out some common contributing factors and we work to minimize these. We also see warning signs sometimes and if we can we can steer T or B towards a quiet space, or a calm activity which may go some way to prevent a meltdown. But this isn’t always achievable or possible. Sometimes we have chatted with our girls about what might have triggered the fear response, but this is rare. Often we find even approaching the subject of triggers can bring back the overwhelming feelings and anxiety visibly increases. Instead we talk together in calm moments about emotions, and physical reactions to emotions learning and exploring vocabulary so that understanding grows in the hope that emotions themselves can be ‘sat with’ more easily, and be less frightening in and of themselves. Hoping also that understanding and vocabulary can help everyday emotional regulation which in itself will build some resilience – and help me to understand my girls better so I can support them better.

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I am in awe of my girls. Having had bouts of panic attacks I know they are overwhelming, scary and exhausting. Facing them and enduring them takes courage. Getting through the day knowing that it could happen takes courage. And my girls don’t just ‘get through’ most days, they are adventurers and explorers who are interested in life, who face new challenges all the time. Meltdowns are not at all easy. They are not tantrums. They need love and support.

 

 

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fun memory verse ideas

We are very caught up in revision at the moment, right in the middle of exams for B.

There are a lot of things to remember – not my best skill! (thank you long term sleep deprivation & anxiety) – formulas in science, definitions, quotes in English and RE. B actually has a really really good memory, and if she is engaged in the learning – if focused, definite, clear cut things get stuck so quickly.

Yesterday we were praying before leading our junior age church club, Blast, and listening to T beeping the numbers on the church key safe to help by getting the keys to open the main doors. She’d been allowed to do the code once before a few days previously and of course, yes, she could do it. The number sequence was at her fingertips. To me that kind of memory seems like a superpower! I simply cannot remember number sequences at all, and am pretty hopeless at recalling definite factual information from memory.

For me, remembering and being able to bring to mind verses from the Bible effort has to be intentionally put in. I know I want to. I know it’s not going to come easily. I know I have to put in the work. With all the focus on revision though at the moment, I am questioning whether I am sharing that hope and expectation about Bible verses. Do B, A & T even think about why or if its important to know verses and be able to bring them to mind? Am I sharing with testimony with them, of times when verses have powerfully changed a situation or strengthened me or someone else? They are naturally gifted with the ability to remember, am I encouraging them to remember the Bible?

I remember a season with A when he was facing night after night of nightmares which were vivid and difficult to move on from and find rest again. We taught him a tiny snippet of scripture;

‘…perfect love drives out fear…’ (1John 4:18)

thinking together about who we knew who was perfect love, and how strong a word ‘drives out’ is. Over a stretch of nights we spoke it before sleep, and when the nightmares came showed him how to speak it out and cling onto Jesus who is perfect love. We imagined Jesus like a superhero/ninja standing tall and kicking his fears out of the door, down the stairs and out into the driveway. We imagined him coming back into A’s room and standing guard till his angels took over again. Sometimes we actively did the kicking alongside Jesus, kicking his fears out of the room as we reminded each other that Jesus, perfect love, was with him fighting for him. We learnt it to the point when some nights we simply spoke out ‘perfect love’ as we sat with him, welcoming Jesus in and waiting for sleep to come again. It reminds me how precious scripture is for our children, how much I want them to delight in it and know it.

So some fun ideas to learn memory verses:

  • love this idea from #flamecreativekids of a dice race… who can be first to roll the dice and be able to say the verse in order.
  • of course, I’m immediately reaching for doodling and colouring… my latest colouring verse was designed for a friend leading an after school club wanting a verse to reflect on.

 

  • following #godventure on social media means I now have the yummy idea in my head of icing parts of a memory verse onto different cupcakes so they can be arranged, remembered and eaten! Love the symbolism of that.2016-06-11 10.19.17
  • using lego, bricks or playing jenga with words from the verse on the blocks.
  • Making up actions to go with the words.
  • Enjoying a song that uses the words, T would be wanting to dance too.
  • Making a nature or magazine collage of the verse together and pinning it up in the kitchen.
  • playing charades to find the words
  • a treasure hunt for the words
  • make bunting or a set of decorations that can display the verse. IMG_20180602_232001_387
  • using different voices, or accents (both T & A find this funny)
  • use fabric pens and design a T-shirt or a tote bag with the verse on.
  • challenge each other to see who can use the verse in everyday conversation!

Please do comment with your favourite ideas for fun memory verse learning!

We all need rest

This week is our half term break, usually a time for a family holiday somewhere… but we are doing things a bit differently this time.

B is half way through exams, so we are supporting and encouraging revision and didn’t feel it would be at all helpful to go away. Going away is an upheaval in itself, even when its to a familiar place, and brings extra anxiety. To be honest we have enough anxiety already without doing things that are guaranteed to bring more!

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Anyway, a while back we came to the decision that Andrew would take A away for a boy’s week together and the girls and I would stay here, hold the fort & get on with that revision. So On Sunday Andrew & A set off for the airport, and flew to France (eventually – there were of course significant delays, and Andrew & I exchanged sighs of relief that we had not gone down the route of T going with them rather than staying here with me.). So Sunday began for us with the boys already left (4am!) – and with me leading communion at church (so the pressure of having to get there at the right time, feeling composed and ready – and the pressure for T to be having an ‘I can cope’ hour while I was involved at the front!). I know miracles still happen – we did it! There on time, T just about coped when I really needed her to (we’ll try & forget the over clingy wrestle mummy to the floor incident before the service started) and I managed to feel like I knew what I was doing.

When we got back from church we decided to chill – Sims went on, pj’s, hot chocs and no pressure to eat a Sunday roast quickly before the next thing. We pottered, washing, gardening, more Sims for the girls. Chickens, guinea pigs and hamsters all there to cuddle. And finished the day with a girly film together eating cake! Monday was another rest day with no pressure other than what the girls needed (for T that was me at her side & bidding for the whole entire day), ending with face mask hilarity with another girly film and then the usual anxiety ridden bedtimes (I have brought T in with me – don’t tell Andrew!! – it’s easier).

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Today revision starts again, and T has had an outing with one of the many wonderfully supportive people from church which has left me a bit of space and quiet to support B & get a few things done – like some writing (and just a little washing-up). Meanwhile physics, biology & more maths being looked at. Tomorrow maybe some English language, along with all sorts of wonderfully intense ordinary just us girls time.

Andrew & A are having a good time too, swimming in the pool, time with Andrew’s brother & wife. Kittens. Books. Outings. Good food, and a much needed break from the intensity of life in a household constantly shaped by autism, demand avoidance and anxiety.

 

pentecost prayers

IMG_20180519_114620532 Our church took part in the global prayer initiative #thykingdomcome, and we had our prayer room set up for 48 hours so that as a church we committed to pray for the whole of that time taking turns in the room.

It was set up using the resource ideas on the #thykingdomcome website. Which focused on the image of the Holy Spirit bringing light.

As a family we have got used to spending an hour in a prayer room together over the years,  (wrote about last years too!) but even so it does still feel a little daunting! And this year I remembered the wrong time!! Ended up gatecrashing another slot (thankfully a family we know well) and then coming back later to do the hour we had signed up for! So we managed it twice in the end…

Each section of the room led us to pray for ourselves or neighbours, our town or the wider world through a hands on activity to help us think or to visualize that prayer. T really liked the coffee filter pictures. We drew in biro first, our street or just our neighbours house, then decorated around the edge with colours of the warm fire of the Holy Spirit. When it was wet the invitation was to pray for that household as we watched the warmth of those colours get closer and eventually cover the whole house. It was messy, visual and meaningful.

Cutting out newspaper stories and putting them onto the large lightbox (a DIY job with a plain plastic box & white Christmas lights) helped us to reflect on how wherever Jesus’ light shines it reveals things for what they are – showing us what’s true.

Using mirrors and torches we tried to shine a light onto different countries on the big wall map of the world. It was quite tricky, and actually involved both B & T at the same time which was great. Finding countries we knew something about, then directing the light and praying.

There was also playdough, and a playdough mat with prayer suggestions. A local map to let feathers (flame colours of course) float down onto to choose us a part of the town to pray for. Some Christmas lights to add thumbprints onto to pray for particular friends. Spiral family prayers.

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Of course I managed to fit in drawing a reflective colouring page using verses about Jesus the light of the world and our calling to shine like stars. This went down well with B (and me!). Feel free to follow this link and print one out to use.

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Also a perfect opportunity to put my book to use, helping me to encourage us to pray boldly knowing that God will answer our prayers because he loves us!

press release

 

is selfcare selfish?

So, it’s been a pretty full on week in the Porter household. GCSE exams began in earnest – a full timetable this week, and study leave starting on Monday; Paediatrician appointment for T (and all the next steps admin to do afterwards!); dentist for B,A & T; Thy Kingdom Come prayer room to set up at church… etc, etc. Plus of course the little extras  like a grit-filled grazed knee (never easy with sensory processing difficulties).

Needless to say I woke up this morning feeling pretty rotten really. Tired, weary, and my body feeling stressed through and through.

I am learning as I get older (prob not wiser!) that mornings like that are a sign I need some time out and some head-space. Thankfully it’s been a flexible enough day for that to happen really easily and I’ve been pottering in the garden – while the kids are at school. But it is difficult not to feel guilty!

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Andrew doesn’t get the same chance, so here I am pottering in the sunshine while he is busy finishing prep for Sunday, and taking a few forgotten items down to church for the prayer room. And later, when we’re all back in he’ll be the one cooking dinner – and highly likely clearing up afterwards too! The house around me is in a serious mess as always (I hold on tight to the saying ‘a tidy house is a sign of a wasted life’!!), and the loos need cleaning, clothes need washing, bed covers need changing – and I’ve already pulled back from some of the busy things of the week to try and prevent this feeling – and all I can think right now is just how desperately I need some space, some less intense, down-time before school finishes and it all gets going again. Health professionals, friends, the TV all tell me self-care is important… but what does it mean as a Christian? I was brought up on verses like these, and the example of wonderfully busy, always-helping-people parents:

 ..don’t just do the minimum that will get you by. Do your best. Work from the heart for your real Master, for God, confident that you’ll get paid in full when you come into your inheritance. Keep in mind always that the ultimate Master you’re serving is Christ. The sullen servant who does shoddy work will be held responsible. Being a follower of Jesus doesn’t cover up bad work. (MSG Colossians 3:23)

Always give yourselves fully to the work of the Lord, because you know that your labour in the Lord is not in vain. (1 Cor 15:58 NIV)

Isn’t self-care giving up, failing to meet these high standards?? Not being strong enough, good enough, enough?? Is self-care selfish?? It’s true, I sit here wishing I were stronger, more capable, that my body was more resilient and didn’t get so overwhelmed by anxiety symptoms so very often! But actually that is the body and mind I get to work with, that is my gift from God and it’s vulnerable, fragile, and real at the same time as being thoughtful, creative, tenacious. I simply cannot do more, and on days like these stopping for a bit is necessary if I am to stay well enough to be of any use to my family let alone anyone else, but is that an okay thing to think as a Christian?

As a father has compassion on his children,
    so the Lord has compassion on those who fear him;
14 for he knows how we are formed,
    he remembers that we are dust.
15 The life of mortals is like grass,
    they flourish like a flower of the field… (Psalm 103:13-15 NIV)

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I don’t know the answer – if there is one! But I do know I am a child of a Father full of compassion who knows better than I do just how my body works and keeps going, who knows how my mind, my emotions and body all hold together and who loves me. The same Father who gave us a rest day as a pattern for good living. The same who took Elijah to the stream and let him sleep when he felt he couldn’t go on, then fed him, and let him sleep some more. Maybe instead of self-care I could do with rephrasing what’s essentially needed on days like this – not self-care, rather Daddy daughter time… time to rest, sleep, eat under his watchful eye, and allow him to care for me before sending me back to it (13 mins till I set off for pick up!) keeping close enough to sit me down again when I next need a breather. It’s possible I could live with that!