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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Book review: ‘More than words’ Hannah Dunnett

Recently B & I have been using ‘More than words’ by Hannah Dunnett in the evenings to help us hear a verse from the Bible every day. It is a beautiful book, we picked it up in the summer – instantly attracted as we have some of her framed prints up in the house and love them.

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Firstly we loved having words of scripture to read presented in such a visual way. Each new painting inspired us to think and chat about verses we knew well in new ways. The colours and contexts that Hannah’s paintings use are full of meaning and for us – both being very visual thinkers – this was a very accessible way to reflect on the Bible together.

Hannah’s own reflections on her paintings are printed alongside each one and form the beginnings of an invitation to reflect for yourself as you trace the words of scripture through, within and around the paintings. They are followed by a small selection of open questions, and space at the end of each grouping of paintings with space for notes. To be honest we didn’t stop and read the questions this time, we had enough to talk about and think about without them. But it’s great that they offer another layer of reflection that we can return to next time we go through the book together.

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I wish we had bought two copies, it would have been easier probably to both have a copy to look at closely and it would have meant both of us could more easily pick out the verses we were particularly draw to. But having said that (and lets face it, it’s easily solved!)  we really enjoyed using the book together and would really recommend it as a different focus for Bible study and quiet with God.

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peace, not necessarily peacefulness

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Goodness it’s been quite a half term in the Porter house! A new school for T, college for the first time for B, and the beginning of the exam years for A. Plus new chaplaincy work for Andrew alongside church, and all the usual responsibilities. Of course, for me this has brought yet more steep learning curves and the challenges of stepping up to the new ways support from me is needed for everyone. Trying to understand and navigate the Further Ed support systems, beginning to build partnership and communication with new tutors and teachers. Reading and re-reading policies and guidelines, law and recommendations to try and work out what adjustments and support it is reasonable to ask for, what I need to find independently and what simply isn’t out there that I’m going to need to creatively put in place myself. One of my friends reminds me that I once said to her that chaos is chaos – no matter how much more you put into the mix, but my goodness it feels as if we have chaos full to bursting at the moment!

Yesterday the secondary school where I’m on the chaplaincy team had a service all about peace. At the end there was a time of reflection with beautiful music being played. In between the boys behind me asking me what different questions on the reflection sheet meant (which I loved chatting about) I sat and read, and re-read ‘my peace I give to you… do not be troubled, do not be upset’. And I sat there and heard Jesus say these words into all of the above and more, and I became aware of my aching painful permanently stressed out shoulders and neck, and I pondered this gift of peace. Given into the midst of the storms of life.

“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 14:27, MSG)

We rarely have ‘peaceful’ times in our family life together. And when we do it’s short lived. We work hard to find ‘peacefulness’ and rest for each of us – we each find it in different ways and places. A good book, quiet, dancing to loud music, gardening, walking, animals, being alone, being with others, baking, drawing and painting, playing, minecraft, SIMS… But it’s elusive and fleeting, the ‘peace’ we can find for ourselves in those ways. It’s needed respite but it doesn’t come close to the deep seated, welling up, strong, protecting all around me kind of peace that I sense Jesus is talking about.

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I think I began learning what this Jesus peace might be like when I was only a child. Words from a song we played on a record over and over, and sang along to have stayed with me through the years and pop into my mind to remind me of the truth I grabbed hold of as a child listening to ‘the music machine’: ‘peace is holding Jesus’ hand’. It is active, holding onto him, trusting in who he is. It is a gift, he stands next to me with his hand stretching out to be held onto, giving himself. He is our peace. We are accepted, loved, understood. We are safe and held through every storm of life. We are not defined and restricted by the systems we have to navigate but defined by and in this belonging with Jesus. Our well being and purposefulness rests in our belonging with him.

My belonging in him can give me the courage I need. I can lean into his love for me when worries yet again try to overwhelm me. When everything feels as if I am wading through treacle I can be sure I am with the one who can speak to howling wind and dangerous waves – and put them in their place! The troubles, worries, concerns, mountains we face do not disappear but we are not bereft or alone. We are ‘holding Jesus’ hand’.

 ‘I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.’ (John 16:33 NIV)

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Being thankful

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Autumn is here! A time for gathering in and taking stock. Plums, apples & whatever soft fruit and veg I have successfully grown. It’s a time of change and a time for re-grouping somehow I always feel. And of course a time of thankfulness. For us crunchy leaves also mean birthday season – so much to give thanks for. But it’s been a tough month to be honest… with so much newness everything seems to have taken a lot more energy than usual. So I’m looking for practical, calming activities to remind myself to give thanks and count all those blessings!

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Doodle thanks I can’t help but doodle my way through life, so this one wasn’t hard to find. Simple… paper and a pen, add a few things when you have a moment to sit down each day. Wouldn’t it be great to display a whole family’s set of doodle thanks. Or maybe start a big communal poster that everyone can add to throughout autumn!

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Jars of thanks: again, not a new idea. We have collected thanks in jars at other times too. It’s lovely to fill a jar together over a few weeks and then have a celebration get together and read them all out. A prayerful activity that grows gratitude in us. These jars were washed out plastic hot chocolate jars (quite astounding how many of these I accumulate!) decorated with foam stickers. We made them at our church’s monthly accessible service.

 

Contemplative colouring: a new design for our celebration of Harvest at church. Please follow the link to print out a copy and enjoy. The idea came to me as I was thinking about surviving those downpour moments in life, when you feel under a cloud and nothing is easy or going smoothly. As I chatted to God about how tough things felt we imagined this together, going one step further than ‘learning to dance in the rain’ we turned the umbrella over and began collecting the rain. I was reminded of the imagery of God’s blessing being poured out, being like rain on thirsty ground. So much rain that it is more than enough blessing for me and for me to share with others. Abundant blessing in the midst of the storms of life. It helps me to stop with an activity like this and deliberately become more aware of the blessings God pours into my life, it makes thankfulness bubble up again.

Books: There are so many good books out there that help us explore thankfulness, and get us talking about gratitude. ‘The world came to my place today’ by J Readman & L Roberts is great for thinking about how many other people and places have had a part in bringing what we need and want to our homes. The classic ‘Wonderful Earth!’ by N Butterworth & M Inkpen is one I go back to over and over again which helps us think about taking care of the gift of creation. Someone recently reminded me of Pollyanna by E H Porter, and the glad game. It’s not one we have so it’s now ordered and on its way! My own book ‘My Easter egg hunt’ explores all that Jesus has done for us and ends with an emphasis on our thankful response.

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Bible story: Looking at the story of the ten lepers who were healed by Jesus would be interesting. Mina has a lovely way of retelling the story over on Flame Creative Kids  It would be fun to go on and each make a chain of 10 paper people, and challenge ourselves to have said thank you 10 times by the end of the day. Or perhaps make some gingerbread men to help us remember.

Bunting: We have often made decorated paper bunting – I have hooks at the ready on one of the kitchen walls. Paper cut into triangles or flag shapes, newspaper, colourful plastic bags, pressed flowers – you get the idea…almost anything can look great as bunting. For thankfulness, at Harvest or Thanksgiving time how about leaves. Decorate with metallic sharpies or marker pens, writing or drawing some of the things we are thankful for. Then laminate them (may need to go through the laminator more than once) and they will keep their colour and hang really well. A hole punch at the top of each and as simple as that you have autumn thankful bunting.

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Knowing God’s voice

‘God answers our prayers’

‘God is always with you’

‘He will help you’

‘God will guide us’

2012-05-13 12.29.31These are all phrases we often use when trying to put words to our faith and hope in God as Christians. At the moment they are often met by T with questions and doubts: ‘how?’, ‘I can’t see him!’, ‘he doesn’t talk to me’. The thing is our words and phrases express our experience of mystery. Our faith is in a concrete, true, eternal God but our experience of Him is not tangible in the same way as a hug with a friend or parent. We don’t hear answers to prayer audibly (very often!) in the same way as a teacher answering our question. The way God’s presence faithfully stays with us as we trust Him is not visible to our eyes in the same way as we see and hold onto our comfort teddy throughout the day. We experience glimpses, senses of these intangible realities through faith and God’s grace (his free gift).

 For now [in this time of imperfection] we see in a mirror dimly [a blurred reflection, a riddle, an enigma], but then [when the time of perfection comes we will see reality] face to face. Now I know in part [just in fragments], but then I will know fully, just as I have been fully known [by God]. (1 Cor 13:12 AMP)

We learn to see with eyes of faith rather than physical eyes, and to hear with our listening, quietened soul – our inner self reaching out for God. We learn to feel his real presence with us. We learn to recognize the physical markers as our bodies and spirit respond to spiritual realities we cannot see or touch physically. A quickened heart beat; the unexpected calm flooding our body and feelings quite independent of our circumstances; a beyond-our-own-courage; an inexplicable warmth; a moment when our own inner monologue is at rest and a new word drops in; goosebumps; when our body and spirit feels the same relief as it does when it can slump into the lap of home – our favourite sofa, in our favourite safe space where we belong and know we are unconditionally loved. We learn the sounds, and touch, the tastes and smells of the mystery that is our living God coming near and walking alongside us unseen and intangible. This is a lifelong adventure of love, of being known and getting to know.

Jesus said, “I am the Road, also the Truth, also the Life. No one gets to the Father apart from me. If you really knew me, you would know my Father as well. From now on, you do know him. You’ve even seen him!” (Jn 14:7 MSG)

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These are things I hope I can model and articulate as Mum to B, A & T. Finding ways to explain the mystery takes me out of the box. We have talked about how we get to know a voice to the extent that we recognize and respond to it even when we don’t see the person. The game where you have to close your eyes and listen with your whole body to be ready to spot someone coming to steal the keys or bells, or a game where we are blindfolded and have to identify the person by voice or smell can remind us of how our body feels when someone is familiar, how our bodies can recognize and respond to someone’s presence. They also remind us how difficult it can all be! That’s quite useful to throw into this discussion. We have spent time talking about the vast number of things we trust are real that we cannot see with our physical eyes, or hear with our physical ears – when you stop and think about it there’s so much we take for granted as real that we cannot see and hear. Germs; wind; atoms; electricity; energy; love. Believing that these things are real is something we do already. Talking about, and living out, spiritual things as real and living rather than just ideas on paper or in a book invites discussion and exploration.

Practicing being in God’s presence together – in prayer, in worship, in questioning, in praise and thanks, in quiet, reading the Bible  – needs to be intentional for us, it’s the thing that so easily takes second place to everything else life throws at us. It’s difficult. Mealtimes, bedtimes and mornings are already a battle ground full of demands. I don’t want activities that invite us to draw close to God to feel like another demand, or another chore on the long list that has to be done at certain times of day. As I have said before, I try to simply be ready! There are bibles on every shelf and I love to read from them when they are picked for bedtime stories. We pray together when we can, in ways that we can – and try not to get worked up when we can’t or when things really don’t go well. We listen to worship songs in the car, and sing them out in the garden and as we walk. We say our arrow prayers and arrow bursts of thankfulness out loud. We name it when we feel God’s presence or guidance, or when God gives us peace or courage. I don’t ever worry about doubts – they open discussion, and invite exploration together. I don’t need all the answers for I speak about mystery and point to our living God who is already drawing close to our children.

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