Wednesday 23 December 2015

Social referencing for experience-sharing

This is the last clip of Lucy for this term and we're all feeling a bit staggered (in a good way) by the comparison between Lucy when she first came to us in September and Lucy as she is now.

In September, her presentation was one of chaotic, disorganised thinking, disconnection from others, very high anxiety, withdrawal from any kind of uncertainty, inability to co-regulate, poor to no social referencing, and complete lack of joint attention.

Take a look at Lucy in this clip from 14th December.

In the analysis of the footage, I am writing in black and Sharon (my RDI guide) is in blue:

Clip 1 - Set up and limits re slipping off the chair.

Clip 2 - I build anticipation around the different ingredients. To facilitate referencing, I say 'First of all.....' and pause before continuing. I do the same with the raisins. Nicely done!

Clip 3 - I say 'I thought we would taste....' and pause

I pause again before sharing the rice pops some lovely inviting and modelling taking place here. We taste and I lean in for Lucy's emotional reaction.

Clip 4 - I share out some more pops and wait for Lucy's gaze before sharing my emotional reaction minimal use of talking is really helping here too.

Clip 5 - I build anticipation around the next cup and share my thinking re the sound.  I wonder what’s in and wait for Lucy to reference before sharing.  We eat the choc and I wait for Lucy to reference before sharing experience.  Lots of experience sharing looks taking place between you!

Clip 6 - (4 min 36) I build anticipation re what’s next did you notice Lucy's raise of her eyebrows, a surprised facial expression!  There is a lot of referencing & even more experience sharing around this love the sharing of emotional reactions - your use of gesture with thumbs up & Lucy's little giggle We eat the sultanas.  I share my emotion when Lucy references.

I feel I have helped Lucy to increase her referencing considerably here by judicious use of pausing :) And by relying more on non-verbal communication.  Zoe this is such a lovely little clip, what a long way Lucy has come this school term.

Where to More of the same, using senses in this way really seems to have helped.  Your pauses, anticipation & non-verbal communication all invite Lucy to take part in experience sharing, fantastic!

End of footage analysis dialogue.

Lucy is now seeking out interaction and showing real motivation for connection (e.g. during session time she will come and sit down on the chair next to the adult straight away in anticipation of fun) as well as enjoyment in the connection.  She is beginning to understand that a little bit of uncertainty is manageable when she has an adult guide whom she trusts to act as a point of reference to help her decide what to do.  Her co-regulation and social referencing are coming on in leaps and bounds and joint attention is emerging.  How exciting!!

Tuesday 10 November 2015

Co-regulatory baking

In the last Lucy blog, we saw the beginnings of social referencing when Lucy was looking at my face for the information regarding whether it was time to turn the page or not.  Our co-regulatory roles were me = reader, Lucy = page-turner.  In terms of the our activity goal (reading the book) each of us needed the other to step into their role otherwise the goal could not be reached.  That is co-regulation......where a role action is contingent upon, but not controlled by, the other partner's role action.  I wasn't telling Lucy when to turn and she wasn't telling me how to read (that would be controlling), rather, we were each waiting for the other to finish their turn before taking our own turn.
We can see from this example how co-regulation is crucial for co-operation and team-working.
Since the last Lucy blog, we had several sessions where we started to get some resistance from Lucy.  After analysing our footage, having team chats and consulting with Sharon (our external 'moderator' RDI Consultant), we think this is because we had sometimes been using the social referencing in a more imperative way, so Lucy was perceiving the referencing as a demand.  We dropped the co-regulatory ball!!  It's so easy to do when you're not being fully mindful.
I decided to have a go at baking with Lucy, as there are usually plenty of opportunities during baking for competence and fun.  Here is what happened.  My analysis of the session is in black and Sharon's feedback is in blue:
I set out the baking framework then give Lucy the sugar role.
Some emotion-sharing seen here.
Lucy brings the chair closer - she is really interested in this :)
I give L the spoon and the role of putting the marg into the bowl, which I have to scaffold and model.
This looks good the only possible difference would be to 'self-talk' rather than say what to do.
I narrate our roles then start a chant.
Great thing to do here as she is already starting to move to the sound of the sugar moving in the bowl..... interesting!  Zoe I think for a first time this is great.  What you might want to think about another time is adding some pauses, lifting the spoon, adding anticipation around your action / sounds & chant to sneak in some experience sharing moments.
I celebrate: 'we did.........(pause to enable referencing).....the creamy mix!'
I say I need to put my glasses on.  Lucy says 'Zoe got....Jo got glasses' (is she mixing us up??)
Not sure, maybe something to keep an eye on.
I give Lucy the eggs and the spoon.  She starts to stir on my chant.
I move Lucy's hair and she stops at this point - she doesn't like the touch?? Or she perceives this as a demand?? 
Zoe I've watched this bit back a few times & am not sure either.  I also wonder whether she has realised you have stopped chanting & so is stopping her action in line with this??  Whether that look was social referencing as in 'Oh, should I have stopped?'
She switches on really quickly when you say 'ready for the next bit', really attentive. 
I give Lucy the role of pouring and she pours.  I chant and then use different speeds for chanting and stirring (chanting at different speeds is one way of enabling a student to co-regulate with your speed, without being instructive. I am just trying this out to see if she registers it). 
I think she could be quite 'rhythmic/musical' & you've hit on something here!  As above I think adding pauses around the changes would spotlight both the change but also add anticipation for emotion-sharing.
I give Lucy the role of pouring the flour.  Lucy tastes the mix and references around this. She references me after I move the bowl away.  I suggest choc that a study response...?  (Ed's note - a study response shows someone thinking about something before they make a decision about what to do).
Wow this whole segment is GREAT!  And yes that looks like studying to me too.
I don't know if she knows what I mean by choc chips so I suggest we go into the kitchen to have a look at them so that we can decide. 
End of analysis and feedback.  I was really relieved at the end of this session that we had managed to get back on the 'co-regulatory horse'.  I felt I had achieved my goal of being as invitational as possible and ensuring that Lucy was not perceiving any demands that might trigger resistance. 
Baking is such a great activity for guiding as it presents lots of role combinations (you pour, I stir; we both stir at the same time; I stir then you stir etc.) that lead to feelings of competence and success.  Plus there are cakes to eat at the end :)


Friday 16 October 2015

Continuing Care update - gird your loins!

I last blogged about this in May, when Tess and Ned's applications for assessment under the Framework for Children and Young Peoples Continuing Care were finally submitted. 

Just to remind ourselves about the criteria for an assessment - the Framework states on page 10 at number 1.1 point 5:

‘A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.’

The case was made that both Tess and Ned have various needs that arise from their autism that cannot be met by existing services. 

It is also clear (to me…with an eye on Education, Health and Care Plans) that both have needs which meet criteria in all three domains of health, education and social care:

Education - both young people attend Bright Futures – a special independent school with a highly specialised low arousal environment and specialised in-house social communication programme (based on the principles and practice of Relationship Development Intervention, RDI).

Social care - on the social care RAS assessment (a Child in Need assessment under Section 17 of the Children Act), both young people scored in the category of ‘very high support needs with profound impact on family life.’

Health (Continuing Care criteria) – Ned’s autism is characterised by high anxiety leading to oppositional, demand-avoidant behaviour, requiring exceptional levels of skill to in order to de-escalate situations and/or negotiate solutions to problems and obstacles.  This presentation impairs Ned’s personal growth and development because it is a huge barrier to him participating in everyday activities, friendships and relationships.

Tess’ autism is characterised by very high anxiety and poor emotional regulation and self-awareness.  Her anxiety has left her housebound and unable to attend school, spiraling into depression.  Very high levels of intensive support over a protracted period of time have been required to help Tess engage with learning again.  Ongoing management is in place at school but there is nothing in place in the home to help Mum (a single parent with 2 other children on the spectrum) manage Tess' considerable difficulties.  Tess is not yet able to interact comfortably with peers and is still unable to leave the house outside of school time.

Both young people are at high risk of social exclusion and their mental health is precarious due to poor resilience and impaired emotional regulation.

Regular followers may remember that in my May blog, the plan was ‘to see whether these two applications are directed away from the Continuing Care process and if they are, to challenge this’.

Each application was submitted to a different Clinical Commissioning Group (CCG – the local health bods who hold the purse strings) because the young people’s GPs (MDs for our American friends) were in different CCG areas. 

The May predictions came true – in Ned’s case, his Mum was told that the ‘Individual Funding Request’ (IFR) process was the process to use for this type of application.  No application of Continuing Care criteria, no assessment of need, just a direction to use the IFR process.  

Back in May, a home programme of RDI was identified on the Continuing Care checklist that was completed by Ned’s social worker as possible provision to meet the needs outlined in the checklist.  What appears to have happened is that the CCG has made the decision not to assess based not on Ned’s needs, but on the fact that RDI was suggested as a provision to meet need.

The Framework for Children and Young Peoples Continuing Care does not use potential provision as the basis on which to make the assessment, it says that ‘a continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone.’

So the CCG are not applying the Framework criteria and Ned is being excluded from an assessment for services that could meet identified needs.  Mum has now made these points to the Health Service Ombudsman and is awaiting a response.

In Tess’ case, a similar response was received.  Mum was told that the application for Tess to access an out of area assessment and a number of sessions of specialised psycho-social input ‘was not considered eligible under Continuing Care.’  Again, the decision appears to have been made not based on needs but based on proposed provision.

Tess's CCG then magnanimously considered her needs under the ‘Individual Effective Use of Resources’ criteria (same as IFR).  The referral to the out of area assessment was deemed ‘not clinically appropriate’ and Mum was advised instead that Tess:

  • Would be provided with CBT
  • Should read the Royal College of Psychiatrists’ leaflets on anxiety and panic with Mum (yes, you read that correctly – someone who is borderline agoraphobic should read a leaflet)
  • Should undergo a trial of Sertraline (Zoloft, an SSRI drug).

It was stated that the Sertraline and CBT recommendations were ‘in keeping with the evidence base.’

A little bit of research (thank you Paul Whiteley) produced the following information on Sertraline:

‘Definitive statements about the efficacy and tolerability of sertraline for treating adults with PDDs must await results from double-blind, placebo-controlled trials. These preliminary results should not be generalized to include children and adolescents with PDDs.’ (PDDs = ‘Pervasive Developmental Disorders’ which include autism).

Mum has written back to the Commissioner asking for comments in light of the above information.  She has also asked the Commissioner to clarify which of Tess’s needs each of the recommendations are expected to meet, over what timescale the desired outcomes can be expected to be achieved and what the success criteria will be,  as well as how frequently it is recommended that Tess attends CBT appointments in order for the outcomes to be achieved. 

The final point she made to the Commissioner was that the NICE guidelines on the management of autism in children and young people recommend that pharmaceutical interventions should be the treatment of last resort - yet these are being recommended in the absence of having exhausted psycho-social interventions.

No response yet. 

Tess’s Mum has made a separate complaint to the Ombudsman on the grounds that the decision not to assess under the Continuing Care criteria appears to have been made not based on needs but based on proposed provision.

An agonisingly slow and protracted process.  Even if the Ombudsman does rule in the families’ favour and directs the CCGs to undertake assessments using the Continuing Care framework criteria, there may be yet another hurdle – with potentially more complaining and Ombudsmanning - if the CCG somehow finds that neither of the young people meet the criteria once the criteria are properly applied.

Ok - here are the instructions for loin girding.  Think we're gonna need 'em.


Sunday 27 September 2015

Lucy uses social referencing to co-regulate (YAY!!)

I am writing in black and Sharon’s feedback is in blue.

I popped into this session to do some modelling for Emma, as it was her first time working with Lucy and I knew how nerve-racking that can be from when I came out of my first session with Lucy dripping like a wet rag!!    I can relate to that... unpredictability re how Lucy may or may not react & how full on you may need to be = high!!!  I have the easy job here :) 

Nice setup / invite to join at the beginning.

Clip 1

0.25 Lucy tries to turn the page but I move the book away and say 'it’s not time yet'

0.44 - She goes to turn the page and references me!!  This was in response to your intake of breath. I reference her and say 'it’s not time yet' 

Clip 2 - More declarative comments and then 'time to turn' at 0.54

When I say 'it’s not time to turn yet, Lucy always seems to sing the same refrain - I'm wondering if this is perhaps a) a form of self-regulation or b) she associates the refrain with it being time/not time to do something??

Clip 3

1.15 She references me before turning the page (YES!!) and I say 'it’s not time yet'

Clip 4

1.28 Lucy sings the refrain, moves her hand to turn the page and references me at 1.29.  I catch her reference and say it’s not time yet. 

Clip 5

1.31 She moves to turn the page, references me and lets go of the page (YAY!).  This time I use non-verbal communication to say 'no' and follow it up with a verbal (I wish I hadn't used words!!)

1.40 I pause after using a declarative comment and offer her the page corner great drop in scaffolding!!  She turns the page

1.49 She reaches to turn the page, hesitates this is in response to your sudden body movement acting as an indirect prompt and references me.  I shake my head and follow up with 'not yet' (again I wish I hadn't come in with a verbal here I'm actually not sure that this doesn't act as a spotlight of her success, as you say it very quietly & gently?!?!?)

2.15 Lucy goes to turn the page and at 2.15 references me.  I use facial expression to signify 'not yet' and laugh as if to say 'ooops!'  At last - no verbals from me!  Zoe this is great... I personally think you are now in the mode of 'just me & Lucy' (not being distracted by Emma being there – this was happening a little earlier) which is why you have switched onto lowering those scaffolds further.

2.38 Lucy moves to turn the page whilst I am still talking. 4.46 She references me and I shake my head.  She stops (whoop!) double whoop, whoop!!

(Ed’s note – Sharon and I are whooping here because Lucy is using social referencing to co-regulate her actions with mine in order that we can reach a joint goal. Here, the joint goal is reading the book together and we each have specific co-regulatory roles that complement each other: my role is ‘reader’ and Lucy’s role is ‘page-turner’.  Without those co-regulatory roles, we are not in ‘together’ mode.  In the past, when Lucy has ‘read’ a book at school, she has taken the book over to her own space and looked at it on her own.  Anyone who has been with her has been observing rather than 'together' at all.

Here, Lucy is looking at my face for information about what to do next so that we can stay in the co-regulatory pattern.  She takes on board my shake of the head and uses that information to inhibit her action of turning the page……she is adjusting her actions in order to accommodate the needs of her communication partner.

The ability to adjust our actions in response to the feedback of our communication partner/s is the cornerstone of all communication.)

2.45 I offer the page corner and she turns

2.52 I comment to say I can’t see the page - to see if she registers this.  She doesn't and I say 'now I can see' at 3.05 after she has let go of the page.  Yes this demonstrates that Lucy is not anywhere near this stage of development yet... I think it was old Stage 3 maybe 4!?!?

3.15 She starts singing the refrain and references me.  I nod and offer her the page corner. The scaffolding has been able to be dropped immensely in such a short space of time... I'm absolutely amazed.  She is already a different child to those initial clips of her in Nursery.  You are all doing such a wonderful job with her.  (Ed’s note: *blushes* on behalf of school staff)

At the end, Lucy tries to take the book off me but I hold onto it and say I am going to give it to Emma so they can read together if she wants to read it again.  I think this is another of those difficult to call from observation.... it seems that Lucy was already starting to let go of the book in response to your comment, do you think that was the case?  If not then that would be an area to think about.... model what you want to see is my motto... if you don't want Lucy to grab things from another then you need to model the pause of waiting for another to hand the object over.  This is similar to the feedback given over the parting with toys rather than taking from her.

(Ed’s note: I think Sharon is right here, having looked back at the footage – Lucy was already starting to let go of the book so no further comment from me was necessary.)

Where to: I really have nothing to add other than you will need to be pre-planning lowering of scaffolding as Lucy seems to be catching on at an amazing rate that she plays a role within interactions!  Looks like she could be keeping us on our toes :)
My final comment is that me and Jo (Lucy’s keyworker) have been ridiculously excited this week with the progress Lucy is making.  It just goes to show the power of getting the environment and the communication and interaction framework right.  Love RDI.  Love my job.