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…’

 

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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.

 

 

 

glossary of a diagnosis

It seems a lifetime ago that we began the long search for understanding – the pathways to a diagnosis. Ultimately as parents we long to deeply bond with and get to know our children, these wonderful, tiny, unique gifts. We long to understand so we can share life together, and provide well for their needs and watch them thrive and grow. Looking for a diagnosis for us was not a desire for a label, or to find the right ‘box’ – it was to understand and from that understanding to love the best we can, support the best we can, and protect the best we can.

There have been so many professions and medical terms that we have encountered in the process, it has been a little bewildering at times and definitely overwhelming sometimes. But I have definitely learnt a lot: here’s a taste of some of the phrases we have had to find out about!

  • ADOS – a set of observational assessments used to diagnose autism.
  • Autism – Also known as Autism Spectrum Condition, and Autism Spectrum Disorder. A condition with distinct areas of difference (neuro-divergence) from the norm (neuro-typical) in terms of thinking and imagination, social interaction and communication – in our house we refer to these differences as superpowers!

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.

These differences, along with differences in diagnostic approach, have resulted in a variety of terms being used to diagnose autistic people. Terms that have been used include autism, autism spectrum disorder (ASD), autism spectrum condition (ASC), atypical autism, classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and pathological demand avoidance (PDA). (from the national autistic society)

  • Alexithymia – inability to identify and describe your own emotions.
  • Dermatillomania – compulsive picking of skin.
  • DISCO – a lengthy questionnaire based diagnostic assessment.
  • Echolalia – a very precise copying of a word or phrase, from TV or a person. Sometimes for self-calming like stimming, sometimes for communication.
  • EHCP – Education & Health Care Plan, fairly new in the UK it’s aim is to be a joined up thinking, legal document of a child’s needs and support needed as they go through the education system.
  • Hypermobility – Hypermobile joints, but also for some hypermobile or stretchy skin, and joining tissues throughout the body with huge affects on health. Ehlers Danlos has found this is also a spectrum condition with sub-diagnostic terms. (Find out more about EDS here.)

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  • IEP – an Independent Education Plan, a system of setting goals and reviewing in a positive cycle with school.
  • Lanugo – fine downy hair growing on back or face when the body is in starvation mode. Not a term I want to have found out about really.
  • Meltdown – different from temper tantrums, connected to sensory information overload. I wrote more about it here.
  • One sided verbosity – not taking turns in conversation; rather talking at someone, using a lot of words.
  • …RefusalSchool Refusal; absolute paralysing panic about going to and being at school resulting in extreme avoidant behaviour (hiding, throwing, kicking, biting, running away). It can mean it is impossible to keep going to school for some. Food Refusal; panic about eating resulting in extreme avoidant behaviour. Can be connected to sensory hypersensitivity, neophobia (fear of new – normal phase in early childhood), and cognitive rigidity (connected to context, utensils, brand, look of the food). It means a restricted diet, and heaps of anxiety around food.
  • Selective mutism – I have written about this here; an inability to speak due to panic.
  • SEND – Special Educational Needs and Disabilities – a term used in schools where there will be a list of students identified as having SEND, and a SENCO (Special Educational Needs Coordinator) whose job is to coordinate support.
  • Sensory Processing – talking about the way our brain & body works to process the information it receives through the senses (taste, smell, sight, sounds, touch, knowing where our body is, understanding what the inside of our body is needing/doing) Just as each of us experiences pain differently, all the senses can be experienced differently. Sometimes someone can be hypersensitive to a particular type of sensory information, and/or hypo sensitive (not able to take in enough sensory feedback in a particular area).

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  • Sleep Hygiene – a term used to mean the good habits and routines that help our bodies get a good and easy night’s sleep. You know, no screens near to bedtime, ‘bath, story, bed’, have a calming bedroom, lights out etc. You can do courses in this too – yes been there done that!
  • Slow processing – talking about the speed your brain can take in information (either visual information, or audible) and respond to it.
  • Stimming – a repetitive movement, sound or word used to self regulate.
  • Webster-Stratton – a parenting philosophy and method. It’s not specific to autism, and you’d recognize it by it’s ‘time out’ method (1 min for every year old, no communication, stay on the step…). I completed basic and advanced levels at our local children’s center. But found the strategies didn’t work with us. I also found I wanted to adapt the time out process to include a sorry & forgiven stage. The part that was useful was the chance to see that we were getting lots of good parenting done – and that B’s reactions and behaviours were not typical.
  • 1,2,3 Magic – another parenting course, this time written by someone with autism in mind. Confusingly it uses the phrase ‘time out’ in a completely different way – a time to calm down and regulate. All about picking your battles, ‘contracts’, simple strategies, and tailoring rewards & consequences to your child.

I’m sure there are loads more that haven’t come to mind right now. And I’m certain there are heaps more still to encounter.

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selective (not selected) mutism

It’s a very unhelpful name, selective mutism I think. If we were in the middle of a game of word association it might be followed by ‘choice’, ‘choose’, ‘select’. I can understand how it can so easily be misunderstood as ‘shyness’, ‘manipulative’, ‘oppositional behaviour’, ‘stubbornness’. We hear the phrase and immediately jump to the misunderstanding that the child is selecting when to speak and when not to. It’s more accurate to understand it as the mutism is selective, not the child. It gets it’s name from the way that the mutism is only seen in certain contexts and not in others not because it is implying choice.

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The most helpful way I’ve found of thinking of selective mutism is to focus on the physiological. It is known that in moments of extreme anxiety or panic the body’s fight/flight/freeze mode affects us physically. Our body’s hormone balances for example are completely upturned, in order to get ready to run or fight. One of the physical affects can be the seizing up of the muscles needed for speech – including the vocal chords. So in that situation of panic speech is simply not physically possible. And that is selective mutism. An outworking of extreme anxiety. For some this anxiety is seen in group contexts (even of familiar people); for others with strangers; for others it is in particular places; for some when under the pressure of a direct question; or simply in front of others. It stems from social anxiety, social phobia and anxiety about demands. Responding to selective mutism as if it is ‘stubbornness’ or ‘manipulative behaviour’, or ‘a shy phase’ ignores and adds to the anxiety.

Selective mutism can affect autistics as well as others. And it can make life very challenging, and scary – imagine needing something and being completely unable to ask for help and get support. It makes being in new situations and places especially difficult when you know you cannot stop and ask for directions or check something with the teacher or your classmates. It can make learning hard work when you are unable to ask for help or clarification. It can make friendships and social times, like lunch breaks, really challenging.

There is really helpful advice and explanations at SMIRA.

I especially like way the article ends:

 Celebrate your child’s unique qualities
We cannot change the personality of SM children – and wouldn’t want to! They are naturally sensitive individuals who take life seriously and set themselves impossibly high standards. The downside is a tendency to be overwhelmed by novelty, change and criticism; the upside is an empathetic, loyal and conscientious nature.

How to support?

  • be kind – patience not pressure
  • surprises add to anxiety
  • give more time than you think for an answer
  • praise achievements
  • disappointment and disapproval are definitely not wanted
  • support the anxiety
  • help find safe ways and places to calm and regulate
  • enable coping strategies for anxiety
  • remember it is selective but not selected

It is not easy to truly understand or appreciate another person’s experience of anxiety – we all get worried about things from time to time, and it’s all to easy to assume other’s worries feel and affect them the same way that ours affect us. Our expectations are too often shaped by our own experiences. But to be able to support we need to put those expectations to one side and take on board the extreme level of anxiety being experienced by someone with selective mutism. It is not a choice. It will not be easily and quickly ‘got over’ or ‘snapped out of’. It is quite paralyzing. And can be so very isolating.

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sensory pit-stops: invitations to find calm

We are counting down now to beginning a new term – new teachers, new classes, and for two of mine new schools. There is definitely a need for me to be providing and enabling as many calming sensory activities as possible – yesterday I just couldn’t keep up!

Our emotions and physical responses to them are so complex I wonder how any of us actually learn to regulate ourselves. For many of us no doubt it comes easier than for others. Certainly if our understanding and recognition of different emotions is still a work in progress then instinctive self regulation is going to be almost impossible. It has to be learnt. So the more varied and frequent opportunities to learn to become calm and collected when feeling huge emotions the better.

These are some of my favourite activities to leave out dotted around the house that can become calming sensory pit-stops:

  • cornflour gloop – best in a room with a wipeable floor: cornflour and just enough water to make a gloopy paste in a shallow bowl or tub. This is great, it gives a sensation of resistance when poked and pushed and also soft fluidity when dangled or allowed to ooze back into itself. To dispose of it afterwards I leave it to dry out a little and then put it in the bin. Bits on the floor or table leave to dry then brush and scoop into the bin. (It blocks drains if washed down the sink)
  • playdough – We make our own, and then for extra sensory input can give it a scent like lavender, citrus, peppermint etc. The best bit of making your own is that it needs to be kneaded like bread dough as it cools down and the warmth with the kneading is amazing… just check it’s not still very hot before you hand it over to the kids. (Our recipe came from a good friend: 1 cup flour, 1/2 cup salt, 2 tbsp oil, 2 tsp cream of tartar, 1 cup of water with food colouring in if desired… beat it together as it heats up in a saucepan.)
  • painting- not perhaps something I would leave out casually all the time but this can be really absorbing; big plain paper, brushes, sponges, fingers etc, paint & imagination.

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  • wobble board – we have a circular board with a curved underneath that was being sold as a toning piece of equipment for keep fit, but we use it simply for fun balancing. When movement and concentration come together it can prove very calming. And this can simply be left out in a place with some space to be used in-between things, or on the way from one part of the house to another.
  • Animals – in our house one of the key strategies for self-regulation is to spend time with animals. Before we had the kittens days like these would be better if the guinea pigs came in and were easily available for cuddles. Now of course the kittens are always to be found somewhere in the house, and thankfully they crave attention and fuss. The only problem is when the attention given to one of them becomes a stress trigger for a sibling- either because they are not ‘doing it right’, or the kitten was found in someone else’s space, or its not considered to be ‘their turn’… but despite those (very frequent) moments I still think being in physical contact with animals brings such a lot of calm and reassurance.
  • blankets – and hot water bottles which add weight and warmth. Always on the sofa and beds ready to snuggle up in, hide under or tuck in tight around you.
  • water – another I cannot simply leave out, but there are so many opportunities during the day whether it’s to encourage lingering over hand washing, helping with some washing up, or allowing some pouring play between jugs tubs and cups. And there’s always the bath & shower on a day without time pressure which for our youngest is probably one of the best ways to really ground her when very anxious. Yesterday we resorted to a bath in the afternoon – and I got time to clean the bathroom at the same time!
  • a familiar activity – whether it’s a film that’s been seen a hundred times, reading a book that is known word for word, or a puzzle that’s a favourite, or a sorting activity with buttons or marbles etc that always gets done in the same way, a familiar activity can be very soothing.
  • music – a tricky one to balance everyone’s different needs at any given moment but brilliant nonetheless. As I write A is playing the piano which he gets completely absorbed in. B likes to listen to music on headphones which shuts all other hustle & bustle out. T loves to move and sing, and tends to want music loud when she wants it. Dance mats, dance games on the Wii, and listening to songs over and over again seem to really help T… but for the sake of everyone else we try to manage how long each time! Another absorbing and regulating music & movement activity is hand clapping rhymes and other nursery rhymes. T still asks for ‘this is the way the lady rides’ (a bouncing on a knee rhyme), and loves ‘a sailor went to sea, sea, sea’ etc.
  • hugs! – almost always on their terms of course, but being available for regular deep squeezing hugs is essential – and so easy, no prep required!

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  • marble bowl – simply marbles in a shallow wooden bowl. They can be swirled, spun, sifted through fingers and listened to as they spin gradually getting slower and slower.
  • mini sensory bin – again a simple bowl or tray, with rice, pasta, cous cous or sand in that is simply available to arrange things in (small world play figures or stones, shells, beads etc) and feel.
  • balloons – not for everyone I know, but the process of blowing up a balloon slows breathing down, and makes us take deep breaths in. And they are really fun when you don’t tie them but fill them and let them go over and over. And for the daring moments when the thought of the clearing up doesn’t phase you, balloons with some water in that can be held (it has a weight to it) and that move about in your hand are fascinating too.
  • dens – safe, inviting spaces to retreat into and block out the hustle and bustle. Soft glow light, flumpy cushions, paper & pens to doodle with and some cuddly toys.
  • tearing and cutting – leaving out an old newspaper or magazine with scissors if that’s appropriate. Prepare for easy to clear up mess, but T can be absorbed in cutting, tearing and scrunching paper for some time and this can be a good distraction from the times when anxiety begins to show itself as restless frustration.