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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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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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.

 

When it’s just too much to write

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So I’ve been busy – busy feeling guilty about not writing! Having tried to write really regularly missing 3 weeks has actually been hard. But there has been such a lot going on, and when I’ve had time I haven’t had enough energy, and when I’ve had the energy not the time!

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Well this week we are camping, and today is a wet day. So I thought why not share my view with you. Here I am surrounded by Lego and discarded crisp packets having already been to the gorgeous little stream and dabbled, paddled & doodled. The cousins and mine are plotting and planning Minecraft realms which they share, so here I am with a space to breathe.

To fill you in we have helped lead the holiday club at church. It was a good week, lots of laughter, games, crafts and chatting faith. T had some friends from school with her in her group which she enjoyed. For the first time A was a young leader, he was good at it… and even became the model for his groups technicolour Joseph coat.

Then we rushed our packing and set off to New wine, the Christian conference we go to each summer. This year we experienced our very own miracle – for the first time T went to every session of her age group meeting with the support of our place (new wine’s inclusion stream) which in turn meant I could go to every single morning session and seminar. That was such a blessing. Great grounded teaching from Jo Saxton about us being ordinary people in the hands and purposes of our extraordinary God. Refreshing worship and real encounters with God. Encouragement and challenge and opportunity for prayer ministry.

New wine is always about community. A practical reminder that I cannot, and am not meant to be able to do it all alone. I am made to live in interdependence with others in my community and the family of God. It is so easy to find myself, in the middle of the kinds of chaos we have in our family life wanting to withdraw and somehow protect myself and children from perceived judgement or misunderstanding from others. I really need regular reminders of how much I need others, of how I am not made to do this in isolation – however difficult that sometimes feels.

And this week we continue with community, camping with my sister & her kids. It’s great to share parenting, meeting the kids needs and enjoying time with them and each other. As a result of my planning ahead I signed us up to the RSPB wild challenge and that has steered us through some lovely nature based activities (that I brought a few bits to help us be prepared for) that we have had fun with. We have stargazer Found wierd and wonderful many legged sea creatures in rockpools and made art from leaves. There has also been a soggy beach visit! A surprise meet up with friends at a castle! Unexpected cuddles with cornsnakes and meercats. And a very very steep uphill walk or two. (Plus lots of biscuits & chocolate into the mix!)

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planning for holidays

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The summer holidays are nearly here!!!

(I say, half excited half terrified!)

It’s altogether a little bit overwhelming at the moment for the Porter family. The heat has been incredibly intense for us – keeping cool in hot weather brings with it particular sensory challenges. Noisy fans, different from usual clothes, sun cream, extreme brightness, open windows (noise we don’t usually hear in the house, insects coming in)… Of course it also gives us sensory opportunities to enjoy – I have written before about some of our favourite hot weather sensory activities – and we also discovered ‘skidding ice cubes with kittens’ this week too.

We are also near the end of term so there are lots of extras going on, each an exciting new challenge which is tiring for all of us. And there are more in the next week too – services, concerts, parties and BBQ’s.

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Do you like to plan ahead for school holidays, or do you prefer the freedom to be spontaneous? I am so looking forward to the pressure of the school mornings being lifted, but I do not like the thought of no routine at all – if I feel we need a day without any structure at all it has to be planned ahead for! And we call it a pj day – then it has expectations and routines all of its own! The first three weeks we have planned for us: the church holiday club (all of us involved either as leaders, young leaders or part of a group), then straight to New Wine summer conference followed by holiday in our usual campsite. Each of those weeks has their own order and lists, usual things to pack, play and do.

When we get back we have some time based at home, Andrew will be back at work and I will be balancing our need for ‘down time’ – lots of time for special interests; family together time – maybe a familiar outing or two; get together with friends; and getting us prepared for a new term – lots of questions, worries, fact finding and getting used to new uniform (not to mention the dreaded shoe shopping!).

I usually find it helpful to have ‘ready to go’ crafts, and games all to hand before the lack of routine (and anxiety) makes it almost impossible to plan and prepare anything.

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Here are some of my favourite go-to sites:

I love the ideas and printables on RedTedArt – great ideas for activities and crafts with everyday things, bookmarks and models to print and make.

A lovely list of (mostly) no prep outdoor ideas with notimeforflashcards

Always lots of new fun meaningful ideas with flamecreativekids

I will be busy collecting ideas I find on one of my pinterest boards