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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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!

 

 

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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bedtime

Sorry it’s been SO long since I last wrote – how are you all?

I can hardly believe we are now back in school routine, first week of the new term has been navigated – with Andrew away into the mix, a supply teacher for T at the end of the week, and a friend for tea after school today. Of course it seemed the perfect week (in a moment of madness, or desperation…not sure which to be honest) to throw in changing T’s bed from a loft bed to a low cabin bed and while we’re at it why not repaint too! what was I thinking??!

The desperation began in the run up to the new term, with bedtimes becoming as always much more of a battle, full of anxiety and adrenaline. Meltdowns happen so quickly and frequently when anxieties are high, and the aggressive, unpredictable behaviour that comes with them feels very unsafe in a loft bed. We got the loft bed when she was growing out of the toddler bed, to give her more space and under it to be able to create a hideaway – both of which has worked brilliantly. But for me the risks are increasing as she gets bigger and stronger, and the end of last week as school began to loom intensely it began to feel quite unmanageable.

So, we have dismantled the bottom layer of the high bed (thankfully it came in sections) and removed the ladder. I say we because I thought I’d managed that far on my own but when our lovely staff lunch had finished praying yesterday and were willing to help me lift the top section down off it’s lowest section it became quite clear all I had managed on my own was to get in a muddle – an allen key and others’ help found the right bolts to undo and put others back that were still needed and then we could lift down the bed!

As I was scheming and working out how possible it would be to do all this I also got to thinking about the colour of the room – one of T’s favourites, yellow. We had chosen a warm soft, almost apricot yellow before we moved in – and the decorators came in and painted – but somehow in translation the yellow had changed into a rather sour lemon if you can imagine that. Zingy rather than gentle. So I got to thinking that maybe this was my chance to tone it down a bit and bring a bit more calm to the room – every little helps. And knowing that even tidying the bedrooms can be an upheaval for the girls I was going to be causing an emotional earthquake by changing the bed, so why not slip in some new paint at the same time rather than creating another earthquake later on in the year? So far T seems to be mostly accepting the changes, and is coping relatively well.

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So I rummaged in the garage to see what we had enough of and found a dark creamy colour for interior walls and a small rather unreliable paint roller and tray and the painting has begun – 2 walls done, 2 to go! Feeling a bit like supermum! (that won’t last, I’ll be utterly exhausted when I finish it and the adrenaline rush subsides!)

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And that completes the first week of term. Kids were fed, hugged, played with and prayed with. Schools were attended, homework has been done (though still more to tackle), instruments have been heard, and swimming lessons, brownies, youth group were remembered on the right days – and chocolate was eaten! Hoping next week is a bit more run of the mill to be honest, but they rarely are!

 

 

 

 

It’s just a cold! (or it’s just the straw that broke the camel’s back)

‘It’s just a cold!’ (or; ‘It’s just the straw that broke the camel’s back’)

What a month. We have limped through a sickness bug, throat infection, cough and heavy cold… and last night the throat infection was returning, and T’s cough & cold seemed to be having another blip…

School has had to be missed by all 3 at different times over the last few weeks. Church has had to be missed. Many of my diary things have had to be cancelled and take a back seat, and I’ve been late & last minute for many other things. Sleep has largely been missed too.

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The trouble with illness is partly the disruption to usual patterns and routines and the anxiety that causes. And when it goes on for a chunk of time it’s also troublesome to break the newly formed patterns like ‘sleeping’ on the sofa – you sit up on sofas so it’s an acceptable place to be propped up, whereas beds are for lying down in so being propped up in bed is awkward and hard to accept. Or the transition from being at home to having to go back to school – especially after the exhaustion of getting used to not being where you are ‘meant to be’ for the last day or two. And none of these transitions are very predictable, I can’t give advance warning, I can’t put them to bed at night absolutely certain that tomorrow will be the day to return to school, it has to be ‘lets see how you are in the morning’, or ‘we’ll have to check your temperature and then decide’…

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The trouble with illness in a family is partly high anxiety. Anxieties run particularly high about sickness bugs, but happen with all the common illnesses that come and go. Quarantines have to be established. Panic at other people ‘touching my things’ or being too close, ‘in my bubble’ reaches another level. Many times when one person in the family is ill others become genuinely physically unwell brought on by anxiety – which of course I can never be absolutely certain of, so the same quarantine procedure has to be put in place which although helps some makes that person feel even more unwell.  Yes there’s plenty of anxiety about catching whatever it is. But there’s also high anxiety about the different physical sensations about the symptoms. Some sensations are intolerable, creating regular sensory overload and meltdowns – especially difficult in the nighttime. Some sensations are just plain frightening, which causes huge unmanageable emotion also resulting in meltdowns.

The trouble with illness is the difficulties of communicating and understanding. ASD for us includes difficulties distinguishing emotions (Alexithymia is the name for this, we often think of it in terms of emotional literacy) which makes it incredibly difficult to even know what’s being felt and then there’s the other hurdle of putting it into words. Emotions and physical sensations all roll into one big bundle of overload that is very difficult to manage, self-regulate, and generally put up with! And all Andrew & I can really do is try to keep things as calm as we can (not easy) and try to help name things for them which can sometimes help to break that bundle down into smaller packages. We can provide some structure and safety, the temperature checking, the written down times for painkillers, the bringing of water, food and stories.

The trouble with illness is partly the need for medication, and doctors visits where they might poke and prod, or even worse ask questions! Medicines are a big difficulty, many we cannot even get near to our girls with, some can be swallowed but are unlikely to stay down, some we can eventually get them to take but the ritual that ends up evolving will be long (very long at times) and painstaking – having to be in the right place in the house, or followed quickly by the ‘right’ squash, or yoghurt, and often having to have complete privacy and silence to be able to cope with taking it… whatever the ritual becomes, it will be riddled with anxiety, stress (and the parent pressure of knowing it’s necessary for them to take in order to get better) and tears… which brings me swiftly on to…

The trouble with illness is partly the anxiety it evokes in Andrew & I about the long term impact it has on us all. We worry intensely about whether the break in the routine of eating (relatively well) will be near impossible to come back from. And despite it being a ‘good patch’, with weight gain and more energy than ever before it is something I have yet to relax about. We worry intensely about whether we are missing something serious when it is difficult to find out what is hurting/different/bothering them, so our usual high alert goes into overdrive. We worry that we may never get any sleep, ever – which may seem irrational, but seems to be backed up by an awful lot of evidence when I sit and dwell on it. We worry we will run out of the energy we will need to keep going and step up to the challenge of establishing ‘normal’ routines again once they are better.

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And we have to lean back onto our faith that we are not doing all this alone, or in just our own strength. That we are loved by a Father who knows we worry and loves us still. Who understands us and our three unique children especially when we are struggling to understand, and who knows what we need.