Hangry

This little infographic shows the typical process we experience when we’re hungry:

And this little infographic shows how hunger turns to hanger and how easily the state of hungriness can lead to escalation in our house (and I suspect we’re not alone):

I love hangryness, its a real joy.

I’ve previously written about Interoception  and Adopted Children & Eating Issues and Demand Avoidance if you’d like more info than the little bits here that you will no doubt need to squint at (it does look pretty though).

I’m assuming that time and working on interoception are going to help with this. I also need to remember to leave Little Bear a tray of healthy snacks outside of his bedroom door for when he wakes up at the crack of sparrows and none of us are ready to leap out of bed and make him some breakfast. On the occasions when I’ve remembered, it seems to have worked well in terms of pre-empting some of the issues above. Anticipating hunger and regular snacking and routine mealtimes do seem to keep things as calm and even as possible (though don’t actually take away the underlying issues). If anybody else has any clever tricks, I’d love to hear them.

Demand Avoidance

I have been pondering this blog for a while and, ironically, avoiding it. There are a few reasons why: it requires research which takes time; I may have had more than my fill, of late, of demand avoidance and I’m not sure how kind it is to myself to spend even more time thinking and writing about it. But hey ho, here I am writing about it because there’s no time like the present and it will, at least, feel current and relevant.

I thought this would end up as a compare and contrast between PDA – Pathological Demand Avoidance – and demand avoidance as part of an attachment profile and potentially some mention of ODD (Oppositional Defiance Disorder), with me arguing that although Little Bear is pretty demand avoidant, I don’t believe he has PDA. However, after reviewing the literature, I feel comfortable to say that PDA and demand avoidance with a trauma history are different conditions and I do think this is acknowledged by some knowledgeable professionals, even if not widely (See this piece of research PDA and differential diagnosis ). I should point out that PDA is not officially recognised as a condition in the DSM or ICD diagnostic manuals but there is a growing belief that it does accurately describe the needs of a specific group of individuals (See PDA Society for more info).

Assuming it does exist, I think what would be really useful would be a Coventry Grid type document (comes up on Google if you are interested)  that drew out the differences between demand avoidance in PDA versus demand avoidance in a trauma background. The difficulty is that this is extremely difficult to draw out. One key factors seem to be the case history – are there trauma/neglect/attachment issues in a child’s background or not? Parents of children who match the diagnosis of PDA are rightly worried about it being branded an attachment disorder because there is a direct insinuation that they have neglected or abused their children. I can see how this could be problematic. However, I do think that where there is identified trauma in a child’s background, such as in Little Bear’s, this should immediately bring into question a diagnosis of PDA. Similarly, I would also say that trauma in a child’s background should bring into question an Autism diagnosis. I’m not saying that an adopted child couldn’t have PDA or Autism: a small percentage could. However, I am saying that where there is trauma in a child’s background, the impact of this should be considered first and foremost.

The second key factor appears to be whether a child who is demand avoidant matches the criteria for Autism. If they do, they are more likely to fit the PDA profile. However, there is also literature out there to contradict this – see Gillberg Research .

I can’t really work out where ODD fits in, because Little Bear appears to fit the profile for that too (ODD is recognised and does have DSM & ICD criteria) but my hunch, again, is that it wouldn’t be right to diagnose him with it.

The group I am interested in are those such as Little Bear, who do not meet the criteria for Autism and do have trauma in their background and are markedly demand avoidant. What is going on with their demand avoidance and how should it best be managed?

A useful place to start seems to be the Extreme Demand Avoidance Questionnaire (EDA-Q) – a questionnaire which has been designed for research purposes and is not diagnostic, but could be useful in picking apart the nature of behaviours we experience. You can find it here: EDA-Q

I have filled it in for Little Bear. As you can see, he scores 38 points which doesn’t reach the threshold for a PDA diagnosis (the threshold is 50 or over) , though it does say that those scoring lower may still meet the criteria as individuals can be impacted differently. I’m a little unclear as to how this type of decision would be informed. Either way, I don’t think he has PDA, yet he certainly does have a higher than average propensity towards demand avoidance. For context, Big Bear scored 6 on the same questionnaire.

These are the descriptors in which he scored the most highly:

• Is driven by the need to be in charge
• If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick).
• Has difficulty complying with demands unless they are carefully presented.
• Has bouts of extreme emotional responses to small events (e.g. crying/giggling, becoming furious).

I have previously written about his need for Control which fits in with the first and second point. In reference to the third bullet point, sometimes demands that are made in a reverse psychology kind of way (‘I bet you can’t do x or y’ or ‘I really hope you aren’t going to eat my apple’), or a challenge kind of way (‘I’ll time you to do x’) go better than a straight forward ‘do it, or else’ kind of way. The fact that I have thought of alternative ways to phrase demands suggests this is something we have to do quite often. In reference to the fourth point, at the moment, something as small as asking Little Bear to go to the toilet and then, God forbid, actually wash his hands afterwards, is enough to unleash fury.

It is also interesting which statements he didn’t score on. I am assuming that in order to gain a high enough score to meet diagnostic levels for PDA, a child would generally score highly across all descriptors. Could it be the areas where children without PDA don’t score that are important diagnostic indicators for differential diagnosis?

Little Bear didn’t score on the following:

• Finds everyday pressures (e.g. having to go on a school trip/ visit dentist) intolerably stressful.
• Takes on roles or characters (from TV/real life) and ‘acts them out’.
• Makes an effort to maintain his/her reputation with peers.
• Prefers to interact with others in an adopted role, or communicate through props/toys.
• S/he was passive and difficult to engage as an infant.

I’m not sure if it’s just the examples used in the point about finding everyday pressures intolerable, but Little Bear loves a school trip and his behaviour was exemplary the last time we went to the dentist so I’ve scored it as zero. I would say that he can find new situations or places anxiety provoking and that might lead to more dyregulation. However, I wouldn’t say that necessarily correlates with greater demand avoidance in those situations. It might, or it might not – I suspect it is more complex than just where we are at the time.

If the descriptor were to mean every day, seemingly inconsequential demands, such as eating, toileting or getting dressed, I would have scored it much higher.

The bits about taking on a role or communicating through props don’t resonate here. Little Bear has good imaginative skills and sometimes there are difficulties separating Fantasy versus Reality but I wouldn’t say he uses them as a means of communication or specifically to avoid demands. I think this is where social mimicry as part of an Autism diagnosis comes into play.

In terms of how Little Bear presents himself to his peers, he certainly doesn’t try to comply with them but not us. I would say he takes a blanket approach to demand avoidance and if anything, there is a slight bias towards doing what familiar adults say. The less attached he is to a person, the less likely he is to co-operate with them, be they child or adult.

In all honesty, I don’t know if he was passive as an infant, as we didn’t know him then, but I cannot for one minute believe that he was!

The other items on the questionnaire that I have scored as ‘somewhat true’ or ‘mostly true’ are mainly not scored more highly because the behaviours come and go or because they used to be a problem but we have seen improvements. I have read that children with PDA can fluctuate in their demand avoidance – becoming much more co-operative when they are comfortable and relaxed. I would say this is true for Little Bear too. If he’s struggling in general, the demand avoidance will be much more pronounced. It is to the point where we have had months of co-operation – where I could just say, “Please put your shoes on”, as I would to any other child and Little Bear would do it with a smile – and then times like we are currently experiencing where every tiny request feels like a battle and can all too easily lead to escalation.

I have gone on the hunt for information about demand avoidance in developmental trauma to explain why this would happen but it’s thin on the ground. The Beacon House information about trauma does say this:

• Boundary setting can trigger a big reaction or noncompliance in child (where there are Attachment insecurities)
• Prolonged meltdowns over small things (as a part of difficulties with Emotional Regulation)
• Rule breaking at school
• Unresponsive to day to day requests (often seen as non-compliance) (as a part of Behavioural Dysregulation)

I guess those things sort of add up to the levels of demand avoidance that we see but I’d be really interested in knowing how other children who have experienced developmental trauma score on the EDA-Q and how their scores are distributed across the descriptors. I can’t help feeling we don’t have enough information about this and at the moment and it would be difficult for clinicians to make informed differential diagnoses between PDA or ODD and demand avoidance caused by developmental trauma.

If anyone knows of any other sources of information I’ve missed, please get in touch.

The one thing that I can unequivocally say is that parenting a child with demand avoidance is a little tricky (I’m totally under-egging it) and that finding ways to manage and manage it, has us scratching our heads. I am very much still working on it but here are some things that sometimes work at our house:

• Know your own triggers. It is very, very difficult to be calm when a child won’t do anything you say. I having to be conscious of the fact that this could cause me to snap and that I need to very deliberately react in a different way. I find this is much easier to do if you plan your response in advance, rather than just reacting when you are taken by surprise.
• At the moment, the plan which feels most effective is not shouting and moving away from, not towards Little Bear. He needs the space and I am less likely to react negatively a bit further back, busying myself with something else. This more casual approach seems to help things simmer down. Little Bear tried to saw the table with a dinner knife the other day, in a bid to avoid eating his tea, but I barely turned around. I did calmly tell him that it was his choice whether he carried on doing it or not, but if he did, I would take the money from his pocket money to fix it. It wasn’t in a threat way – just a pointing out a logical consequence way to help him with his decision.
• Self-care. I know people mock the concept but maintaining patience and calm in the face of zero co-operation is exhausting. We must look after ourselves (I’m talking to myself as much as anyone after a friend gave me a stern telling off!)
• Allow much longer to get ready to go somewhere than you’d think necessary. This allows your small person to spend time avoiding and doing everything but getting ready while you gently steer them through the necessary tasks. Time pressure won’t help anyone.
• Reduce the demands. There are certain tasks that have to be done but can you help by dressing or feeding or helping in another way? Other tasks, which are not essential, could be omitted for that day.
• Often it is verbal demands that Little Bear can’t tolerate. Sometimes we manage to acknowledge this in advance of what is likely to be a tricky situation for him e.g. bedtime and are able to collaborate on a solution. We’ve found that things like having all the equipment Little Bear needs for a task laid out for him e.g. toothpaste already on the brush, pyjamas laid on the floor etc. means he can complete the whole routine himself without us needing to make any verbal demands. Visual supports like a tick chart or timetable can also work.
• As mentioned above, careful wording of a command can help e.g. reverse psychology or a challenge. Unfortunately two good choices no longer works for us, because Little Bear has figured out he can just agree to neither.

 

I should point out that underlying the demand avoidance is likely to be anxiety of some kind – whether it be a fear of losing control or some other internal precipitant – so we should be mindful of this and manage the behaviour as kindly as we can.

I have to be honest and say that I am a little torn over demand avoidant behaviour. Half of me is extremely therapeutic about it and willing to be patient and accommodating. The other half of me thinks that one cannot successfully navigate life never doing what one is asked (employers and the Police certainly aren’t too keen on it) so perhaps there is some mileage in being encouraged to push through the difficulty barrier of wanting to avoid demands. I insisted, the other day, that Little Bear did carry out his reading before he went on an exciting day out. I insisted very quietly and patiently and had been specific on how many pages I expected (hardly any) but such was the strength of his need to avoid the demand that he would have given up his day out just to avoid the reading. We persevered and when he finally did the reading, we were able to praise him and make a big fuss for pushing through something we knew he was finding difficult. He was pleased with himself and had a lovely day out.

Isn’t this how resilience is built? By people believing you can do things you think you can’t and supporting you to achieve them anyway? Life for Little Bear is going to be extremely difficult if he can’t cope with the smallest of demands so I don’t see that lowering our expectations to zero will be of much long term use to him. I suppose, like everything, it’s a fine balance between being therapeutic and building life skills and we continue to hobble along the line.

 

Speak Up For Communication

With absolutely no mention of decorating downstairs toilets this week, I am back talking about the serious matter of children’s speech, language and communication needs – SLCN.

Last year, I wrote this post – Ensuring Children’s Speech and Language Needs Are Met: A Call to Action– about The Bercow10 report – a damning reflection of the state of speech and language therapy services in the UK and the enormity of unmet need. RCSLT and ICAN last week began a new campaign highlighting the changes that have been successfully brought about in the year since Bercow10 and asked for renewed efforts to speak up for SLCN.

Of the 47 recommendations made in last year’s report, 17 have already been fully actioned, which is a promising start.

You can see some of the key successes here:

I mentioned the petition begun by @GillianRudd at the end of last year’s blog post. Following an incredible effort, this was successful, gaining 11,622 signatures and leading to a debate in Parliament. The government have stated they are committed to meeting the needs of children with SLCN, and Teresa May herself has committed to change during Prime minister’s question time.

However, there is widespread agreement within the speech and language therapy profession that this is not enough. Budget cuts have decimated speech and language services up and down the country. Yesterday, there was an article in the Daily Mirror about children languishing on waiting lists for as long as a year before getting any sort of meaningful help (see Mirror Article). The NHS department I used to call my professional home no longer exists – its contract having been lost to a private provider – and those children I work with in independent practice talk of long waits, minimal input and quick discharge in their NHS services. I never thought I would have to end up working privately to be able to give children the quality therapy they deserve and part of me is still saddened by it, not least because private services are out of reach for so many vulnerable children who need them.

Pressure on NHS speech and language therapy departments has been growing over a number of years, with an increase in need and a decrease in funding. Clinicians are under pressure to move children through services as quickly as possible and to be inventive with the budgets they do have. The department I worked for, put a heavy emphasis on others, such as speech and language therapy assistants and teaching assistants, carrying out therapy with children. This was part of being ‘lean’ and making savings but ultimately I think it has devalued the work and knowledge of speech and language therapists and contributed to the demise of services. We also worked to an ‘episodes of care’ model, in which children were seen for a block of therapy to target a specific aim and then discharged, with the plan for them to come back again when they needed more. Although this was effective for some children – the ones whose parents or school would make sure they did come back – I’m sure it put vulnerable children with poorer support networks at increased risk. Although the service was designed for children to come in and out of, I think it gave the message to some people that nothing else could be offered and that children’s needs had resolved, where they hadn’t, and were unlikely to for their lifetime. In trying to be frugal, I suspect some services have inadvertently misrepresented the severity and long-term nature of some SLCNs as well as lessening children’s chances of getting the additional support they needed at school (funding is difficult to justify if a child isn’t actually under any external services).

As it stands, Little Bear has also been discharged from speech and language therapy. He too could be re-referred but that would require energy I’m not sure I have. I would need to prove his needs were severe enough to get through referral criteria and no doubt start back at the beginning of the initial assessment to waiting list process again, which took a year last time. He clearly does have ongoing needs – he has Developmental Language Disorder – but proving the daily impact on him would be difficult now his needs are more subtle. Like any parent of a child with SEND, I am already pretty stretched with managing behaviour, seeking funding, trying to get school to understand his needs etc. etc. I’m not sure that I should have to jump through hoop after hoop to get him the help he needs. Yet I would have to. And so too do parents of children with SLCN in all corners of our country.

For me, it has been far easier to create a speech and language therapy programme for Little Bear myself and to train his TA to carry it out myself. Clearly this is a perk that other parents cannot rely on.

The majority of clinicians want what’s best for children and many are deeply frustrated by the limits of the services in which they work. In an unprecedented move, RCSLT and ICAN wrote an open letter to government last week, asking for SLCN to be given the attention it deserves. It was countersigned by 60 organisations, ranging from Autism charities to fostering and adoption charities, who share a deep concern about the future of children with communication difficulties. You can find it here: Open Letter

Five key areas requiring change have been identified as priorities for action and are the five areas the open letter asked the government to act upon. They are:

Joint commissioning of Services – as SLCN impacts upon children’s emotional wellbeing, education, future employability and likelihood of involvement with the criminal justice system, a joined up approach to meeting need would be ideal. It is hoped that this would also help to iron out the postcode lottery which currently exists in the provision of speech and language therapy services.

Long-term support for SLCN – although support has improved in the early years, support for the 10% of older children and teenagers who will have ongoing needs continues to be poor.

Professional Development – there is a pressing need for all teachers and those working in the field of childhood mental health to be aware of SLCN and the many ways it might present. Professionals need to be able to identify SLCN and be aware of clear pathways to support.

Incentivising schools – budget cuts are impacting on education settings too. In these times of reduced funding and fewer EHCPs, it is imperative that schools are supported from the top down to identify and meet SLCN. The anniversary report asks for provision for SLCN to be considered during Ofsted inspections.

Supporting vulnerable groups – as children who have been excluded from school, those in Care, those with mental health difficulties and those who are involved with youth justice are more likely to have SLCN and are more at risk of their needs going unidentified, improvements need to be made to the support available for these groups as a priority.

This is the main area where I have tried to make an impact – providing training workshops for adopters and prospective adopters to arm them with knowledge of communication development; how to identify red flags and what to do to best support SCLN at home. Myself and another speech and language therapist adopter have also written a social communication group specifically for children with trauma backgrounds which is currently being advertised. It is good to see that work is beginning to happen with children who have experienced, or still are experiencing the Care System in other areas, and training for speech and language therapists in this previously neglected area is becoming more common too.

There are pockets of hope but in short, our work is far from done. RCSLT and ICAN are asking for our ongoing activism. We need to continue speaking up for communication and for children with speech, language and communication needs. We cannot stand by and do nothing.

If you would like to help, here are some things you can do:

• Use the hashtags #SpeakUpForCommunication and #SpeakUpForSLCN on social media
• Make a Vox Pop clip to pledge your commitment to speaking up for SLCN and share on social media (advice here: Vox Pop Guidance ) . I’m still pondering how I can get involved with this anonymously…
• Visit the website here: www.bercow10yearson.com where you can download speech bubbles and get tips on other ways to join in
• Write to your MP, or tweet them. Are they speaking up for communication? They are our representatives in Parliament – we need them to know about SLCN and Bercow10. We need them to speak up most of all.
• Retweet and share this blog
• Tell anyone who will listen about SLCN

Perhaps if we all shout loud enough, real change will happen.

Museum of Curiosities Loo

Apologies to anyone who has come here looking for adoption or communication-related content – I’m having a temporary hiatus. Or perhaps just an interior design interlude. As many of you know, I love a bit of creativity and sometimes use it for the purposes of self-care or just for fun.

A while ago, I was inspired by Dick and Angel’s Tower of Curiosities on Escape to The Chateau and got the notion (as I do) to turn our barely bigger-than-a-cupboard downstairs loo into a mini-museum. It was painted pale yellow at the time and was pretty boring, so why not?

It took Grizzly and I quite a long time to curate a collection of items and fittings that would create the feel we were after. We were keen to source things from flea markets and antique shops so there was quite a bit of luck involved as to what we could find when we went rummaging. Consequently it took about six months to get everything we needed and only about a day to transform the room (quick lick of paint and hanging everything up). Here it is:

 The walls are painted in Teal Tension by Dulux. I was worried it would be too dark for a small space but it’s perfect. The floor tiles are from Topps and add to the Victorian Apothecary vibe. The wall tiles were an eBay find from a few years ago. They’re 1970’s and hand-painted. They are clearly not fitting with a Victorian theme at all but I don’t worry about sticking to an era – if I like it, it comes in.

I like the bright yellow in the tiles and have pulled it out in some accessories.

 I like the slightly macabre, freakiness of Victorian museums/ collections of curiosities/ medical equipment and wanted to create a similar vibe in the downstairs loo. We saw things in some flea markets that went one step too far – a pickled kitten, anyone? I didn’t want to actually give the children nightmares but I did fancy some taxidermy and random items that might make the mind wander:

 I didn’t want to ruin the vibe by sticking in an Ikea loo roll holder or towel rail (like we had before) so we tried to find something vintage/ different for them too:

 For some reason, I’m good with dead bats but chopping the hooves off a deer to make a hook is one step too far for me, so I’m pleased to say the deer feet hooks are fake.

I don’t think the bathroom is fully finished. Unfortunately, I’ve run out of surfaces to display things on so I had to pass up an old doctors set which I found the other day.

However, I’m still on the hunt for things to display on the walls. I don’t know what yet, I’ll know it when I see it. I like the ceramic parrot – he isn’t easy to notice as he’s the same colour as the wall – but I like that he adds texture and might be a bit of a surprise. I also have an idea to either paint a mural or buy gold letter stickers to write ‘musee’ (with the accent, if I could find where it was on my computer) down the left-hand wall. That’s the fun part about this type of design – it can evolve.

I hope you enjoyed a little nosy. Back to normal service next time.