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.)

20171020_125207

 

 

 

  • 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).

20161026_083919

  • 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.

20161112_155630

 

 

 

Advertisements

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.

IMG_20180813_190847737

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.

IMG_20180813_193750150

 

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.

IMG_20180528_133110458_HDR

  • 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!

20170513_165345

  • 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.

 

is it a paddy, is it a tantrum, no it’s super-meltdown: things I need you to know about meltdowns

The thing about sensory processing differences is that they are there all the time, sensory cravings alongside sensory defensiveness in a world full of light, noise, movement and touch means it can be surprisingly easy to get overwhelmed. The thing about autsitic masking (think swan with crazy fast, unseen feet working so hard to camouflage and do the right thing even when it feels like you are an alien in a world where the social expectations and rules are always just out of reach) is that it takes so much energy, so much focus to survive or overcome worry after worry just to make it through the day. So it doesn’t need much of a niggle, misunderstanding, or unexpected moment to be knocked off balance and all the bottled up worries and stress to burst out. Meltdowns happen. They are inconvenient, stressful, messy, noisy, attract unwanted attention, are painful and exhausting – for all of us, public or not.

20160709_144529

With a tantrum or angry outburst there are words, frustration and a battle for control. As a mum I know to reach for clear boundaries, definite options to move forward and get ready in the back of my mind for a suitable consequence if calm is not restored (for B when she was younger the consequence that worked best in these situations was her doll being put out of reach for the rest of the day… these days it’s much more likely to be screen time that gets affected if one of them simply refuses to stop and calm down.)

But a meltdown is entirely different. For us meltdowns are non-verbal, mute – there is sometimes shouting and screaming but there is no verbal communication. And there won’t be until a long time after the meltdown subsides and things are becoming regulated again. Meltdowns are not a choice, not consciously attention seeking – or a tool being used in a battle for control. A meltdown is out of control for the one experiencing it. As a mum I know this is not the time for negotiation, talking it out, or reaching for clear boundaries. My job is to keep things safe, and be there.

In a meltdown what I see when I stop and look into my child’s eyes is not frustration and willful battling but fear and the kind of rage that fear can be. It’s a panic attack. Their whole body is involved, flooded with adrenaline for fight or flight. The heart is pounding, their arms and legs lashing out in defensive attack. Things can be thrown as if in self defense, they can hide tight in an impenetrable ball, they can run as if their life depends on it. It is as if everything – every sound, touch, thought, feeling is coming at them. They are overwhelmed. They cannot find the ground. It is terrifying, exhausting. As a mum I know this is not the time for discipline, or consequences. My job is only to stay close, keeping them safe.

The aftermath of a meltdown takes a long time to go through. Rest has to happen, some withdrawal from demands. There is a need to feel secure and grounded again, either through a tight cuddle (T needs this often) or a familiar safe space and activity (usually a repetitive one). There will be no words for a long time. Often there is little to no recollection of the details of the meltdown at all, just sadness and regret at the thought that they might have hurt us. As a mum all I want to do now is give reassurance and be an undemanding loving, accepting presence.

It is often difficult to pinpoint the triggers of the meltdown. With a tantrum it is often much clearer what the whole thing is about. With a meltdown this isn’t always the case. With hindsight Andrew & I can work out some common contributing factors and we work to minimize these. We also see warning signs sometimes and if we can we can steer T or B towards a quiet space, or a calm activity which may go some way to prevent a meltdown. But this isn’t always achievable or possible. Sometimes we have chatted with our girls about what might have triggered the fear response, but this is rare. Often we find even approaching the subject of triggers can bring back the overwhelming feelings and anxiety visibly increases. Instead we talk together in calm moments about emotions, and physical reactions to emotions learning and exploring vocabulary so that understanding grows in the hope that emotions themselves can be ‘sat with’ more easily, and be less frightening in and of themselves. Hoping also that understanding and vocabulary can help everyday emotional regulation which in itself will build some resilience – and help me to understand my girls better so I can support them better.

20170418_142818

I am in awe of my girls. Having had bouts of panic attacks I know they are overwhelming, scary and exhausting. Facing them and enduring them takes courage. Getting through the day knowing that it could happen takes courage. And my girls don’t just ‘get through’ most days, they are adventurers and explorers who are interested in life, who face new challenges all the time. Meltdowns are not at all easy. They are not tantrums. They need love and support.

 

 

Easter photo diary

IMG_20180401_190703019

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!!

IMG_20180401_190703019