Friday, 10 July 2020

Curiosity Killed The Cat, But It May Just Save Our Children!

Some years back I attended some training on using Dyadic Developmental Practice (DDP)  in supporting children who have experienced developmental trauma, during which I was introduced to the concept of PACE. The PACE approach focuses on P- playfulness, A- acceptance, C- curiosity and E- empathy. (I would recommend the Dan Hughes link below for more information regarding PACE).
Two things occurred to me; this approach should be used for ALL children AND surely curiosity is how we all respond to children! Being a natural people watcher and analyser I knew of no other way, yet it seemed this wasn’t the norm!
So now within my role in supporting parents to support their child and working with schools to adapt to individual needs, I talk about curiosity a lot! And as a parent I try my very hardest to use this each day (although I’m only human and sometimes energy levels don’t allow!)
Curiosity is a given when we are amongst adults! A colleague is late for a meeting, we wonder why? Are they ok? A good friend gets short and impatient with her children, we worry, they need a break. Our partner complains of insomnia and feeling unwell each evening, we worry about their physical and mental health.
Yet when it comes from a child we assume they didn’t care about being on time, they are rude and uncaring or they are attention seeking or avoiding. Maybe they are late because a friend was upset or hurt, maybe they were rude because they have had a hard time at school that day and too need a break, may be they are unsettled at bedtime and complaints of feeling sick are due to anxiety.
Let’s consider how this could look in school. A child is told off for talking in class; he is deemed disrespectful? Or maybe he is supporting his struggling friend sat next to him. A child is not sitting still and deemed unable to listen nicely, what if maybe she needed the loo but is too scared to ask as she knows she should have gone at break. And on that matter, in what work place would an adult be restricted to go to the toilet only in scheduled breaks?!
Anyway, the biggest point I want to make is the importance of curiosity when we are parenting, caring or educating a neurodivergent child (i.e. an autistic, ADHD) or any child for that matter, but especially for a child who is possibly less able to understand, articulate or verbalise their needs or distress.
Often a child who is autistic will behave or respond differently to a non-autistic child. This is because they experience the world in different ways and they may communicate their experiences in a different way. Either way their experience is real and valid i.e. if a child finds the noise of the hoover upsetting then that is real and a genuinely distressing experience even if the rest of the family don’t feel it in that way. Something I hear often said to a child is ‘just ignore it/them/her/him; the response the child often given is ‘I can’t just ignore’. This is real and truly excruciating for a child who is already possibly overwhelmed by the environmental factors such as; the sensory onslaught, the social expectations and demands and then some adult turns around and says ‘just ignore’ the annoying tapping of the child next to you, or the fact that your shirt feels uncomfortable. Overload and meltdown are likely.
So I suppose we need to be curious as to what is going on under the surface; under the surface of the iceberg, below the surface of the water of the swan. Many children I see don’t feel the build-up of their emotions, many parents talk about their child’s emotions going from 0-100 in the blink of an eye. Many children will try to mask or suppress emotions in unsafe feeling environments (see my last blog for more on masking), some children have differences with Interoception, in that they don’t feel the internal sensations that tell us our emotions are stirring e.g. that pounding heart when we feel anxious. Some children have alexithymia; difficulty feeling, understanding and communicating emotions. This interferes with children managing their emotions and is actually quite scary when you think a child could very suddenly be overtaken by a flight/fight response at any given time with no warning!
So with all this going on; sensory differences, different communication style, difficulties with understanding and communicating emotions, how can we respond with anything but:
Curiosity; what  why? What is my child communicating & what is the cause of her distress? Why may they be behaving/presenting this way? What is their experience and why?
Acceptance; my child is angry, overwhelmed, uncomfortable and although I don’t have the same experience, it is real for them. It’s hard accepting that my child is distressed and it may hurt me when they feel this way, but emotions are neither good nor bad and not accepting them does not make my child not have them or feel any better. I.e. ‘you’re ok, that doesn’t hurt’ when a child falls and cries, doesn’t take their pain away!  Imagine sat with a group of friends, talking through a negative experience you have had and your friends say ‘oh you will be ok, it wasn’t that bad’! I’m not sure you would feel understood, listened to and cared for!
Empathy; although I don’t feel the same way I can validate and empathise with my child’s experiences i.e. ‘I can see this is really hard for you’. The myth of autistic people not having empathy is still going strong! (This is absolutely false by the way!) And yet so many still have a lack of empathy for the lived experiences of autistic people. Empathy comes easy when we truly understand our child’s needs and experiences.
In practice (i.e. real life) curiosity could look like this; a child is ‘refusing’ to leave the house for a walk. Her refusal could look like; refusal to get dressed or put shoes on and/or dropping to the floor at the door, seemingly having a ‘tantrum’. One response maybe to shout, force and insist without question, inevitably causing further distress communicated in ‘challenging behaviours’ from the child OR a child going into submissive/fawn mode and eventually being forced into complying (often being made to feel like they are ‘ruining it for the whole family’ or ‘a naughty child’ if they don’t). HOWEVER let’s throw curiosity into the equation!  A child refuses to get dressed; why won’t they get dressed today (bearing in mind they may be unable to tell us what’s up, why they are struggling, not linking it with the walk even)? What have we planned today that maybe a struggle for them? What did we do yesterday that they are still de-compressing from? Do they need more down/chill time? Do they need some reassurance? Do they need some preparation or control over today’s events? What about a walk could they be struggling with? The child’s perspective could be; “last time we went out walking Mum stopped for half an hour to ‘chat’ to the neighbour who asked me lots of annoying ‘small talk’ questions like ‘how’s school?’ which is rubbish as I hate school but no-one ever wants to hear that!” Maybe the walk is overwhelming and scary as it involves crossing a busy road which always has loads of motorbikes/sirens/lorries on. Could a walk be causing physical distress, “every time I tell Dad my legs ache he tells me ‘we are nearly home’ when actually we aren’t and I’m in pain!” or “every time we go for walk we change the route, which means the walk is unpredictable and stressful for me.” If we could have empathy for this we could make adjustments and agreements that make the walk feel less scary and overwhelming for a child OR we consider if maybe it’s too much for a child to manage today and he needs to practice some self-care.
How could this look in school? The child punished for copying her partner is maybe struggling to process auditory information when the teacher gives instructions. The child deemed inattentive and always ‘daydreaming’ is needing to look away from the teacher in order to process what is being said to her. Curiosity in the classroom is paramount for ensuring needs are understood and met.
Re-framing our children’s ‘challenging behaviours’ as a communication of their distress, their overload and their frustration with a world that so often goes against their neurology aids empathy, which in turn naturally aids us to respond with nurture and care which in turn ensures our child has good mental health.
Curiosity has to be the first step to this!


Further Reading

Friday, 26 June 2020

A memorable day!

I’ve just seen a lovely post about a bride surprised on her wedding day by 2 students with down's syndrome bringing the rings down the aisle

It brought back memories of a wedding I went to with my then husband, M. 

I was working as speech and language therapist in a residential special school for children with ASD and complex communication, where we had a brilliant team of teachers and TAs. It’s probably my favourite place to work apart from this current job.  I had a really good working relationship with all the staff including Katrina, the music teacher. Katrina was getting married. 

Katrina had a lovely autistic student in her class, J aged 10 years, who looking back, had definite demand avoidance. She was bright, bubbly and we all loved her. She was also very stubborn and said and did things to shock. She had tried a part-time placement at the local school but her lack of inhibition had become too much of an issue.

J had shown a lot of interest in the build up to Katrina's wedding. She was interested in the dress, the groom, the cake etc and these topics had been incorporated into lesson planning with great results as it was following her interests and led by J herself.

Katrina, therefore, said, 'Yes,' when J asked if she could come to the wedding. J's mother was horrified, as she was far more experienced than us at taking J out to places. We always went to planned places with easy exits and at least 3 staff plus Roger the driver and a risk assessment. Her mother said it would be too difficult. As an eternal optimist, I naively said it would be a shame if she couldn’t go and that she could sit with me and M.

On the day of the wedding, I hadn’t actually got around to telling M that we were going to have a third person with us. I mentioned it quite casually as we were parking the car. As we got out, a little blonde head emerged from the open window of a passing Mondeo, screaming LIBBY!!!!!! 'I guess that’s J!?' said M with a strange pained look on his face, that I hadn’t actually seen before.

We sat mid-way in the church on the bride's side and J read through the order of service. As I listened to her (excellent) reading, it dawned on me we weren’t there for  the usual 20 minutes. Oh No, it was a catholic wedding and Katrina was a musician, so it was almost 2 hours with musical interludes and lots of readings and prayers.

Katrina smiled and mouthed Hello at J as she came down the aisle and J bit her hand in excitement and pleasure.

J sat quietly for about 10 minutes, then she began to entertain herself. 'MMMM Reverend Crisp.... I bet he likes walkers best. Do you think he likes cheese and onion?' I whispered, 'Maybe' hoping that would placate her but instead she yelled, 'Oy Reverend, do you like cheese and onion?' I daren’t look at M but could feel the heat from his embarrassed face as the entire congregation looked towards the source of the shout.

Bored, she began to try cuddle me, then put both arms tighter and tighter round my neck until I was struggling to breathe, but at the same time trying not to make a scene or fuss! I had a hat on so couldn’t wriggle out from under her grip, which was what I typically did in similar situations. I also usually had other staff who would come to my rescue, as we always had each other’s backs. M didn’t know what to do as he was upset that he could see I was being hurt but he was big guy and she was a10yo child. I used the super diversion tactic and asked M to get out the chocolate bar in my bag. Emergency instantly over!

Next, with melted chocolate now allover J's face and my cream dress, she turned to the deputy head behind us, 'Is that your son?' she asked, knowing full well it was her husband. The DH never really understood the children, so she hissed her through gritted teeth to stop being rude and turn around. 'There's no need to be rude, you ugly poopy pants in stupid glasses and your dress looks like a bag,' said J!

After a short interlude of silence, she then said quite, quietly, 'I’ve just done a wet fart.' I whispered back, 'Don’t worry, I’ve got some spare pants for you.' This wasn’t sufficient, so she loudly, yelled, 'I said, I’ve done a wet fart!!'...... just as the congregation had silenced to pray...... 

I won’t go on but needless to say it got louder and worse. I’m not sure why I didn’t think of it earlier but eventually, we went for a walk, leaving my husband to stay, frozen in embarrassment in the church. I didn't see J's Mother, but she told me afterwards she was hiding at the back of the church just grateful it wasn’t her with J on that occasion. 

Katrina had been aware of J throughout and thought it was highly amusing!  

Thursday, 25 June 2020

And you never noticed

For my darling girl, when I find the time and the courage to write again: 

Dear SENCO, I did notice, I did tell you, repeatedly. I shared all the information. I had about my child with you. But your hands were tied, funding, policies etc.

You "didn't see anything" in school. Although my girl couldn't cope with school dining room, sat on a wobble cushion in class, wore her ear defenders constantly, was always the last one to be ready for PE, left school every day with Mum waiting at classroom door with her favourite cuddly toy and threw her school bag at mum, stomped accross playground, got into car, started to shake and refused to cry until car was on the main road and past all her peers who walked to and from primary school as a group, without their parents.

You never noticed that she ate the same packed lunch every. Single. Day?

You never noticed that on every school trip she needed to sit next to the same teacher, at front of coach and eat polo mints, because she got travel sick.

You never noticed her pulling her hair out in class, scratching herself til her cuticles bled, that she returned to school after summer break with eyebrows and eyelashes and hair ina pony tail. You never questioned why 5 weeks later, after school residential, parent sent photos in of child's depleted hairline, non existent eyebrows and lack of eyelashes?

You made an emergency referral to Social Services citing "Safeguarding concerns" when 3 weeks later parent emailed to say child has had 2 panic attacks at weekend, said she wanted to die and would not be in school because you were seeking an urgent private apointment with a Paediatrician? Because child had been on the CAMHS waiting list for 2.5 years and wasnt severe enough to warrant any input?

You never noticed how Mum stopped talking to anyone at school, about anything? You never noticed how mum sat at the back, nearest the door, at school assemblies? You never noticed the bags under Mum's eyes? Until she broke down in the "Way Forwards Meeting" when you told her child must come to school every day because attendance was really important?

So, you never noticed?

Yet you were concerned enough to contact the Multi Agency Safeguarding Hub on a number of occasions that term?

And you could find the time to ring them every other day to ask them for an update?

And you could arrange meetings with professionals but not inform or involve mum because you were "concerned about her mental health?"

So, you saw a silent mum, at the classroom door, every single day. You saw the child for 6.5 hours per day, 5 days a week. But you didn't notice. Until child became too ill to attend school.

Then you found the time to invite yourselves, 2 members of staff at a time, round to my house, my child's safe place, on less than 24hours notice because you needed to do a welfare check.

Yeah, you never noticed...

Well, I'm glad you haven't had to notice the flowers on the grave....

I'm glad that I stopped my child attending school that term. I'm relieved that the Government ordered the schools to shut. I'm glad that my child wasn't classed as vulnerable. I'm glad I am not a key worker. I am glad my child doesn't have an EHCP (yet). I'm glad my child doesn't have a social worker. I'm glad the social worker decided there were "no safeguarding concerns".

I'm glad my child is still alive. I'm glad we can enjoy another day, together.

And you never noticed....


Shared, anonymously with The Author's Permission