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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He made his dwelling place among us

I have a fun task this afternoon – creating some palace scenery for King Herod in our Christmas Eve family service this year. True panto style I’m imagining going big, bold and dramatic… he was known as Herod the Great after all…. ‘Oh no he wasn’t!, Oh yes he was!’. We even have a panto camel waiting to join in this year, can’t wait.

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Looking back into history it’s hard to grasp just how vulnerable a baby was, even born into a palace with guards for safety; servants to keep fires going and wood stores full; money for blankets, clothes, and beds; well educated advisers to help; it must have been precarious for the newborn and the Mum. Harder still to imagine the dangers for a baby born outside a palace in an ordinary home, or less. Imagine the dangers of having a newborn at a time when the kings whims were law. Of course Herod the Great could order that all baby boys under the age of two be killed in and around Bethlehem so he could keep a tight hold on his power.

When I think of the vulnerability of how Jesus came to us it astounds me. That the Son of God should hold so loosely to his home in heaven and come to earth in this way (as a baby born into a situation with little political and material security and minimal life expectancy, on top of the innate vulnerable dependence of being a baby) is unbelievable, isn’t it? It fills me with wonder and astonishment that he should be born among us like this, just the same as us, just the same as the least of us – us at our most vulnerable.

While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no guest room available for them. (NIV Lk 2:6,7)

Christmas with all it’s excitement and busyness, with it’s celebrations, family gatherings, feasts and presents seems a far cry from the moment Mary gave birth to Jesus. We had a card this year with a poignant and provocative picture of the manger in the foreground of a merry-go-round scene, busy with people and noise. It brings home to me the seemingly stark contrast between Jesus’ birth and what Christmas today seems to look like.

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Yet perhaps emotionally it’s not dissimilar. Christmas seems to bring into sharp focus our feelings of insecurity. Will the money stretch, can we get the gifts we want/feel we need to get? Will family all get along when we meet up or will it feel fraught with tension? Have we got enough food in, have we got everything we need? Is my house big enough, good enough for visitors? Are my relationships secure and content? Am I safe? Am I alone? Am I seen? Am I understood? Do I belong? Why does life feel so hard when everyone else’s life looks like a party? Christmas can make us feel our vulnerability. We yearn for home – the home that’s perhaps in our imagination, where there is harmony, peace and love, where every little detail is perfect and safe and cosy. That’s certainly not our real experience. Even putting up our tree this year triggered a meltdown that took a good couple of hours to calm.

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Difficult family dynamics, hard to manage meal times and bed times still happen despite Christmas and feel worse because of it! Meltdowns and shutdowns don’t stop for the holidays, in fact they tend to increase in frequency because of the bombardment of sensory input, and lack of routine – not to mention the number of people coming and going and the demands of increased social interaction. The stresses of the logistics of family life and church life seem to be at their worst at these times as we juggle all the extras that we all throw in because it’s Christmas. The pressure we put on ourselves to make it all amazing and good enough for everyone presses our I’m-not-good-enough buttons. And we keenly feel the losses; loved ones who have died, traditions we always hoped for that are simply impossible for us, family moments we have imagined but have yet to realize.

Jesus came into the midst of all that. The uncertainty, the sadness and grief for what’s lost; the insecurities within us and around us; and into the midst of the hopes and longings. He came and made his dwelling among us – not at a respectable distance where he was less vulnerable but right there at the heart of real, everyday, ordinary human experience. He came into it to reach us, to meet us where we are, despite the dangers, despite taking on vulnerability because of love. He came as a baby to be one of us and died our death to break it’s power. His love was strong enough to come to us, strong enough to free us, strong enough to gather us into his family through the new life he offers. The story of the baby born, fully God fully human, God making his dwelling place in the midst of our everyday is a story of hope. He entered into the insecurity and vulnerability of our existence to find us and love us all the way back home to him.

He was supreme in the beginning and—leading the resurrection parade—he is supreme in the end. From beginning to end he’s there, towering far above everything, everyone. So spacious is he, so roomy, that everything of God finds its proper place in him without crowding. Not only that, but all the broken and dislocated pieces of the universe—people and things, animals and atoms—get properly fixed and fit together in vibrant harmonies, all because of his death, his blood that poured down from the cross. (MSG Col 1:19)

In all the moments of insecurity, worry, stress, and difficulty this Christmas the story invites me to see again the truth that Jesus gets it, he understands it; he faced it too so he could have the chance to whisper ‘I love you, you are so precious to me’. (Even when everything is a muddle;when children don’t appear to listen when you read the stories about me; when people get along – and when personal space gets invaded, again; when you stay in with one child who doesn’t want to be out in the snow, and when you’re dealing with the over cold children who did go out to play; when there’s a meltdown; when you worry about the child hiding in their room; when the food’s just not right…. I love you, you are so precious to me.)

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.

 

 

 

How can it be nearly December?? what happened in November

I’m not sure what happened to November this year!

It’s been fast and furious in our family this year. After the settling down into new patterns of school and college at the beginning of term, November has seen homework and assessments… and the planning and organizing of work experience placements which is daunting. This term A has been involved in the school musical again, ‘Legally Blonde’ so he’s been busy with rehearsals and this week with the shows. We went to see it together, really fun. (Came away with plenty to unravel and talk about with T afterwards though, maybe more of that in another blog.)

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Little Jaffsie enjoying a secret hideout in the garden

The kittens have reached the age to begin exploring the garden – though I am nervous, and closely supervise still. My worries not at all calmed by Jaffa discovering how to get up on the garage roof already. Padfoot is still being kept inside, his health has not been good since we’ve had him and there are ongoing investigations and tests with the vets. So for now it’s easier to monitor him in the house. It’s easy to make sure he gets tonnes of cuddles and fuss – he just laps it up. They are becoming a wonderful part of family life, Padfoot particularly seems to sense when to curl up near someone who needs calming, and Jaffa is a bundle of energy and curiosity which is a great motivator.

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helping with bathtime

All the usual stuff of course is still being shoehorned into each week – although sadly the washing Himalayas is actually a mountain range of epic proportions as I write despite my best efforts! And no matter how often I hoover, it always needs doing. And best not to even comment on the lack of tidiness – it’s overrated I reckon.

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Padfoot (aka paddington!) investigating our latest creation – a gingerbread house

We have had some together time of Friday evening – one week even a film we all watched together (quite often we divide into two groups for Friday chillin out) – and we made our kittens a gingerbread house at the same time, partly inspired by the film choice: ‘Charlie and the Chocolate Factory’. Little projects to occupy while we wait for the start help such a lot, and I’m on high alert all the time I find it near impossible these days to relax with a film so it kept me busy too! We’ve also ‘enjoyed’ some Friday family times shaped by meltdowns and struggle – so it’s good for me to sit and remember a good one.

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It’s been difficult to say goodbye to one of our lovely loyal guinea pigs this month. Custard Cream died very unexpectedly. And we miss him. We have planted a beautiful Hebe where he is buried. And the other half of the duo – Bourbon Biscuit – has been brought inside for the winter and is getting a lot of looking after from T. The two hamsters are fine – rather cheeky around the kittens, always popping out to stare at them, and trying to have a little nip if the kittens get too close. And the chickens, bless them, have been malting so look a bit scruffy and sorry for themselves but are fine.

Church life is gearing up for Christmas on top of all the usual busyness – I have yet to begin everything that needs doing for family Christmas of course, but somehow it seems to always come together in time (and what doesn’t, doesn’t matter). And schools have a lot of extras, Christmas Fairs, services, concerts, mufti days, discos… most weeks I struggle to keep up with what’s happening when and for whom!! I’ve also finally got round to filling in yet more forms to apply for carers allowance with the encouragement of a good friend. These things take such a lot of energy! Really thankful Andrew is a detail person, November has been a month and a half!

 

 

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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