Anxiety Based School Refusal. Lily’s Story.

Anxiety Based School Refusal. Lily’s Story.

Last night Lily and I realised that she had been to EVERY LESSON this week!   It is the first time she has managed this for 6 months.  

It was a huge achievement and testament her hard work (also mine) and that of a pretty awesome school team.

What happened?

Prior to May Lily had ‘100% attendance’.  The day before half term she came home mute.  The following day she sobbed and sobbed and was unable to attend school. School were kind, suggested she rested and marked her absence as illness. Over the half term break she was fragile, tearful, anxious played like a much younger child.

The holiday did certainly not fix things.

Lily goes to a pretty large mainstream school.  There are 660 pupils across the 4 year groups, yet I was to discover that the nurture and individualised support she would receive would be unlikely to be matched in a tiny private school.  I have previously described how the culture of her school and excellent leadership appears to us and how enabling this is.  

What followed could have been viewed as inexplicable school refusal. Some may have argued “It makes no sense, she is fine in school” or “She knows she can trust us, you just need to get her in to school and she will be fine”. Thankfully, everybody involved knew that forcing her into school would have caused ‘damage’, led to very long term school refusal and firmly embedded in her mind that school was most certainly not a safe place to be.

The First Half Term

Lily fell apart. Her anxiety was horribly high all the time affecting every aspect of her life. She was unable to sleep, play, work or attend school like before and quite quickly unable to attend the clubs and activities she previously enjoyed. I was unable to do much other than support her (and Peter whose placement had also broken down – think Panorama exposé type scenario- police, LADO, Ofsted…).

Lily would want you to know: 

  •  She WANTED to be in school.  Just pause.  Please remember this.  Having a body full of the effects of adrenaline Is. Not. Fun.  We would not dream of dragging adults into work hyperventilating and sobbing – and for good reason.
  • She didn’t feel safe.  This was absolutely not the fault of the school or ‘logical’ but was very real and impossible to override at times.
  • She was terrified of feeling/being trapped at school with waves of panic and anxiety too difficult to manage; she needed to know she could leave any situation and be in control of that decision.  
  • She had an overwhelming fear that she would be pressured into attending a lesson that she felt she couldn’t manage.  Pressure could include simply a feeling that a teacher wanted her to do attend a lesson and that by not going she would let them down / lose their kindness or support in the future.  
  • She was desperately worried she would be negatively judged by her teachers.
  • She was very scared of other pupils.
  • She didn’t need her teachers to be looking for reasons for, or to be trying to justify, her feelings. All they needed to do was believe her. And they did.

Lily has previously had long periods of treatment from a CAMHS clinical psychologist for anxiety and issues related to school trauma (from a different school).  Two terms before, her care had been handed over to school from CAMHS and she was doing well.  See here, for information about that support; which was incredibly enabling.  However, a school incident in May triggered flashbacks and memories she had not before remembered or processed, and she was now acutely very anxious.  This came on the back of some nasty ‘girl type/subtle’ behviour from others and the combination of the two became impossible for her to manage.

Early support

It is my observation (from the stories of others) that episodes of school refusal often last for years once they become entrenched and the fear reinforced.  That is a massive chunk of ‘lost childhood’.  

It is very easy to inadvertently reinforce the fear.  Revisit the list above… 

Her fears were: 1) being trapped at school (not allowed home the minute she felt she needed it) 2) feeling pressured into attending lessons (this can be as simple as thinking it was what a teacher wanted her to go – especially those most trusted – the feeling of letting them down just compounded the problem) and 3) thinking that people didn’t understand: being negatively judged (understanding why she was feeling the way she was was impossible for her to explain, it didn’t seem to make sense as we all knew how well she was looked after in this school) – believing it was real, without questioning it, was essential.

It would be easy to drive up the difficulty she was having in attending school, reinforce it and lead to it becoming more and more entrenched, simply by not letting her home (kind encouragement to stay longer), gently persuading her to go to a classroom or unintentionally giving her the impression she wasn’t trying hard enough.  Not surprisingly in this highly anxious state, she was hypervigilant and likely to pick up on any of these, as in her mind, they could impact on her ‘survival’.

The early behaviours and responses by school staff were critical to enabling her to access school.  

Things that helped:

  • Letting Lily take the lead.  She knew what she could manage and needed to listen to and notice her feelings if she was to get on top of things.
  • Understanding that progress would not be linear (allowing 2 steps forward and 1 back type approach and explicitly reassuring her that this is OK).
  • Demonstrating relentlessly that her fears would not be realised; that she wouldn’t be trapped, pressured or judged and that she would be protected from the unkind behaviour of others.  One lapse in this would set her progress back weeks.  
  • I learnt to report any small incidents of unkindness Lily was experiencing from a group of children.  This better validated Lily’s experience and helped the school to tackle the behaviour, preventing it from building up.  I didn’t realise that school would want this: I thought that should wait for more or bigger incidents…
  • Trusting, 100%, that she would be independent as soon as she could be again…

Providing this level of support to a relentlessly tearful, anxious, hypervigilant child is exhausting and requires superhuman patience.  Of course, it is far harder for the child but, nevertheless, showing this level of support consistently is very difficult. I firmly believe it can only be managed where there is a team of like-minded staff (that can share the load a little) supported in a culture that matches the aims outlined.   That Lily received this is, in my view, testament to the school leadership and the peer support the staff seem to offer each other.   

Next Steps

The next thing that school did (within a couple of weeks) was to consider all other possible factors.  They re-referred to CAMHS (following the advice of the clinical psychologist when her care was handed over to school, 2+ terms earlier) and also followed up on the results of a literacy assessment; referring her for a SLT assessment.  Lily does have a bit of a spikey profile and gaining a better understanding of this helped – not just the adults but also it helped Lily to better understand herself. It later transpired that some of these dips in ability are most likely due to trauma and will resolve in time after more trauma based therapy.

Early on in this period of anxiety-based school-refusal, forward-thinking, so as not to compound the difficulties, was very helpful. Key to this was the development of ‘lead staff member(s)’. I refer to them here as ‘trusted staff’.

There are a few staff the Lily feels most safe around. This I guess, like most relationships, evolved naturally. What worked really well was that these were used naturally by the school – she wasn’t ‘allocated a staff member’ and then expected to use this person for support. Support was arranged around relationships that were already in place. Lily tells me that this is not unusual at her school and she can see this is repeated for other children… their support too is carried out by staff the children naturally gravitate towards…

In the early days her trusted staff looked at the days and week or so ahead, spotted things that were most likely to cause additional difficulty and how can these be mitigated.  For example sports day cropped up a few weeks in.  Plans were made for Lily to be given the option to stay next to trusted teachers helping them with their jobs.  She managed to go to school and felt safe enough to take part in her races as a result.  

I suspect that Lily’s attendance in school was some of the highest for a child refusing school. Each morning, Lily went to see her trusted staff. They looked at her timetable with her to see what she felt she could manage. She often made it in to school, however she was attending very few lessons (maybe one a day I think to start with). The rest of the time she was in one of her safe places, helping the the librarian (one of her trusted adults) or one of the two teachers she felt especially safe around. The PA to the SENCO was another trusted adult she knew she call call on if others were busy. She spent time helping, drawing and doing her work in the library when she could. She couldn’t manage any regular part of school life but with this support she made it in to school frequently and this was a massive help.

She learned to trust, SHE HAD FUN! This was so important – it didn’t mean she was cured but it was powerful medicine. Some children regularly came to check on her even though she couldn’t manage to leave her safe people and places to play. She was allowed to eat with her trusted adults – they spent every lunchtime with her as far as I can tell. FOR MONTHS. She was allowed headphones and to keep her phone on her to listen to music. She wasn’t pressured to attend lessons, tutor or assemblies. Because of this she limped on to the end of the summer term with sporadic attendance.

Despite all the support she was exhausted. Some days she would think it was going to be OK and then we would be half way to school – suddenly she would be deathly pale and silent tears would be dripping off her face. We would be outside school for ages, I would suggest going home, she would say “Can you move the car closer to the entrance?” She would inch her way in. It was incredibly hard for her (and me and everyone else for that matter) but what was clear is that she was suffering horribly and that she didn’t want to be. She wanted to be in school having a laugh with her friends. I think that is what pretty much all children want – even those not in school.

There are a couple of other observations I would like to make.  Firstly, just how young she was behaving compared to her peers.  She was 11 yet behaving like and needing the support as though she was much younger. She was carrying a teddy around school for example.  Secondly that actions taken by school can radically impact the ability of the child to manage school the next day.

On occasion (out of desperation) a member of staff might consider using a more forceful approach. I understood the temptation – the whole situation was exhausting for all of us. I don’t think we actually did this as we knew the result would be that it would rapidly become impossible for Lily to attend school at all if we did. Had we forced her recovering the trust would probably have taken months or longer – I know many don’t recover from being forced against their ability to withstand stress.

Moving On – the second half term

Over the summer I was able to pay for an Mental Health Nurse to spend time with Lily at home. Talking to her and revisiting the anxiety strategies she had learned about in the past, as well as learning some new ones, helped. We didn’t go away on holiday but instead I was able to spend many days with Lily going on road trips, visiting friends & National Trust places and ‘just being’. Her anxiety attacks reduced but she was still in a bad way overall.

Towards the end of the holiday Lily mentioned that being in a different tutor group may help. Her Tutor was great, certainly none of this was her ‘fault’, it just felt right to Lily to have a fresh start to the new school year. I tentatively emailed ‘school’. The teachers had done so much and I was worried compassion fatigue might hit at any time – I needed to learn to trust too maybe. School staff had already put a huge amount of thought and planning into her Year 7 timetable – and now we were asking for more?

It was sorted in hours. The new tutor group was arranged and support to get the different ties without additional cost was even offered. Clearly we needn’t have worried.

This change meant that Lily was going to Tutor regularly which was a big step forward. She also managed to walk to school with a friend. There were a number of advantages to this: easier separation from me, exercise to burn off the unwanted effects of adrenaline and a distraction in the form of chatting to a friend all the way. She didn’t manage this every day but many days and the number increased over the next few months.

Still, every day her first stop in school was to see her trusted adults and plan for the day ahead. I feel that it is important to note that these drop ins with trusted teachers were/are often FUN. They have loads of LAUGHS and that this is really very important. It’s not a therapy session – yet these provide perhaps the most important thing that a teacher could offer. To feel happy in school, to build relationships – just to have a laugh! Lily was not aware of anyone that judged her as ‘cured’ because she was having fun in school. Nor any that labelled her as attention seeking because she ‘looked fine in school’. She still needed this support – and as soon as she didn’t, she moved on to be with peers – she led the progress, and as a result her progress was rapid.

During this term Lily started attending many more lessons. This was in part due to some very careful planning of the groups of children (different class groups) and separation between Lily and the girls that found tormenting her to be a fun pastime. Also key to this was NO PRESSURE and the qualities of the teachers she had. Lily learned that she could give things a try and that she would be allowed to leave and go to the library without question or ‘encouragement’ to try harder – to stay longer…

By half term Lily was stronger. I sensed that I could push her a little to manage some things at home:

  • I could only do this because she was feeling so safe at school.
  • The result was a real boost in her confidence – and the knock on was more rapid progress at school.

Getting Better – the third half term

The progress Lily had made two half terms in was huge. It is important to note, however, that this still did not lead to a reduction in support offered by school staff. Their consistency was/is incredible. Her progress was because of their support and it all stayed in place for Lily to access. And she did – it was clearly still needed. She was now attending all her lessons bar two or three with the following support still in place (and probably more):

  • time with self allocated trusted adults every morning and as required through the day;
  • the ability to leave a lesson any time without question and the ability to not attend any lesson without pressure or judgement or ‘encouragement’;
  • every lunch time she spent with trusted adults – having fun (she told me she would NEVER go to the playground as it was totally dangerous there);
  • a couple of after school groups with other more vulnerable children were set up – she went the weeks she felt able to and really enjoyed them.

Not long after, Lily chose to try two new things. One was to eat in the canteen – the result was an announcement that she would never be doing that again! She quickly reverted to the quiet and fun lunch with her trusted teachers outside of the canteen. The second was to go into the playground with ‘friends’ during breaks. The latter worked well and by the end of the Autumn Term Lily, I understand, is often outside at break times (one of her trusted adults is usually on duty in this playground which helps). Her friendships have been strengthened and she recently announced that she ‘has friends’ and was setting up a ‘WhatsApp Group’. Now that was scary! So far this has provided only laughs and a phone that bleeps constantly 🙂

I suspect Lily will always be checking that her support is there, but is clearly leading a weaning process that is right for her.

After a long wait and only because I challenged the ‘new’ CAMHS system Lily was assessed by a wonderful CAMHS Nurse and is now on the list to have trauma based treatment from a Clinical Psychologist. I feel that her future is very bright – full of happy school memories and friendships. I believe that she so easily could be out of school now and for many months – even years ahead; that the rest of her childhood could have been so different had her teachers and school leadership team taken a different approach to supporting her. I truly wish that every child that has school based anxiety could experience this level and type of support but I know that many don’t.

Please see here for a comprehensive evidence based guide to supporting children who are struggling to manage school related anxiety.

6 thoughts on “Anxiety Based School Refusal. Lily’s Story.

  1. 18 months on from my daughter’s breakdown due to anxiety based school refusal, 1 Tribunal, 1 Ombudsman investigation, 1 special school placement and she is still, very much, dealing with overwhelming anxiety around attending school and leaving the house. The difference now is that her specialist ASD school are not putting any pressure on her and trying multiple approaches so that she feels safe in school. The damage done by her last mainstream primary where she only attended full time for 1 term and they argued with CAMHS and the paediatrician and accused me of fabricating illness is immense. It will take years to recover. Their arrogance, ignorance and general dogmatic determination to be right despite all evidence to the contrary has cost my daughter her wellbeing and her education. She is one of the lucky ones with a parent determined to do the best for her. Others are being systemiatically broken. These children will spend their lives vilified, blamed and reviled, ping ponging between Mental health placements and the criminal justice system. It starts very young and is reinforced daily. Teachers are the first line of defence against this. Many go above and beyond every day, put their own sanity and jobs on the line to advocate for vulnerable children. Others are ignorant of the damage they are doing. The profession needs to stand up for children against successive governments whose academic agendas ignore child welfare and family life. We are human, not machines, despite the approach of successive education secretaries.

    Liked by 2 people

  2. Going through ALL this with our daughter – her school incredible supportive too. small steps, heaps of understanding, no pressure, no anger…just day by day -sometimes even hour by hour! thanks for sharing.

    Liked by 1 person

  3. You are one incredible mum and I am proud to call you my friend….Lily is amazing as is the school…..I know it’s hard but keep going-your kids are awesome…

    Liked by 2 people

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