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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Easter photo diary

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So sorry to have missed posting last Thursday, it has proved a very busy couple of weeks. So rather than missing another week, I’m hoping you won’t mind a post with more photos than words! (probably a welcome relief!!)

Last Thursday schools finished for the Easter break, and simultaneously Andrew’s parents arrived for the weekend and we all went to church to ‘help’ set up for Passover – it helps considerably to get there ahead of the crowds.

Passover itself went as smoothly as could be expected with a very tired T who didn’t really want to be there! The ramp up to the front of church was a useful escape place a couple of times, and we averted a meltdown by escaping to a corner to calm down. So thankful for the support of church family at these events – no tutting or staring, just acceptance! And wonderful friends who are able to coax T and distract her when I’m reaching the end of my patience…

Good Friday was a spacious, informal hands on experience at church. Thinking about Jesus’ hands and our own. It was meaningful, poignant as always to be exploring faith and reflecting together with all ages and abilities.

Followed by a family afternoon with all its usual ups and downs, finishing with popcorn & a film.

We survived Saturday!

Easter Sunday was an early start for Andrew, followed by a whole church family celebration with bacon butties which the rest of us joined for. Afterwards a lovely table full of guests and good food for lunch, then back to church for our accessible service in which we explored clues from the Easter story to find out what happened to Jesus & his friends.

Since then our visitors have travelled home, it has rained – a lot!- we have had lazy pj days with lots of TV, some gardening, some tidying, some window washing (I know, what came over me!), table sanding, sleepless nights and talk of revision, and of course chocolate eating!!

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comfort zone

 

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In our household we talk about retreating to our ‘caves’ – the little cosy, personal spaces that are our escape places to retreat to and shut the world out of. They are not actually dark, or particularly cave-like at the moment but they have been at times; tents, dens, hidden corners under beds – even under sofa cushions, duvets or in kitchen cupboards at times. Safe ‘dark caves’ are actually really important. We need times where we can relax, guard down and know we are safe and all is well even if only for a short time.

Being ‘out of your comfort zone’ – being in situations, or doing tasks that are really challenging for you can be so tiring. I have been reminded of it this week. It was my turn to lead the singing at the toddler group – something I have been doing in different toddler groups for years yet still very out of my comfort zone! Without fail I come away from those few minutes feeling tired and drained. Context is everything isn’t it, I have sung with my own children, nieces and nephews since forever. How different it feels in a room full of expectant little ones – and their carers.

Yesterday I had a big out-of-my-comfort-zone day. It was an RE ethical debate for the year 10’s at secondary school, and I had been invited (and had willingly agreed I might add!) to be part of the panel giving my views on abortion, euthanasia and faith schools and then ready to answer questions afterwards. Exciting, invigorating, inspiring questions and insights from the students alongside shaking hands and legs and racing heart! I was in need of a darkened room once it had finished! But felt pleased to have taken part. Having the chance to explore different points of view, different faith beliefs and the complexity of these tough ethical questions is so vital. I’m always so thankful that these kinds of debates were always opened up for us around the table at home growing up and that we were always encouraged in finding our own thoughts and listening to the viewpoint of others.

On days where shaking hands and legs, and a racing heart are a big part of the experience a safe retreat space is needed. I would hazard a guess this is a daily experience for many autistic people facing situations, contexts and tasks that are challenging day in day out.

I spent some time at toddlers enjoying studying the church ceiling with a little one who I suspect was escaping to a safe retreat place for a few minutes, away from the noise and happy bustle of the large group (T does the same sometimes – often through a camera lens). We can find retreat spaces even in the most unexpected. Different places giving us that much needed rest at different times. Our loving Father God knows we need these retreat spaces. He offers himself as a hiding place for us. His presence the ultimate safe space of retreat. And just like we fill our cozy caves with things that we need to calm, and refresh us, God our Father’s presence is full to overflowing with love, faithfulness, acceptance and peace for us.

‘..hide me in the shadow of your wings’ (Ps 19:8 NIV)

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‘Come to me, all you who are weary and burdened,

and I will give you rest’. (Mt 11:28)

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
 I will say of the Lord, ‘He is my refuge and my fortress,
    my God, in whom I trust.’

                         ………

He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart. (Psalm 91: 1,2,4)

psalm 26 3 faithful

 

looking for joy

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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!

 

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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.

 

friends

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“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.

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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.

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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