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The Secret Carer
Features Writer
@TheSecretCarer
6:22 PM 23rd August 2021
family
Opinion

A Damaged Child: Part 3 – A Direct Appeal To Parents – Why Schools Need To Seek External Professional Advice

As I mentioned in Part 2 of ‘A Damaged Child’, learning disabled and autistic children who display challenging, distressed behaviour are attempting to communicate unsuccessfully their unmet needs, whether they be physical, medical, emotional, sensory or psychological.

Unfortunately, children with speech, language and communication difficulties often cannot clearly articulate their needs, whilst many other learning-disabled children cannot identify or know why they may be feeling overwhelmed and distressed at that particular moment in time.

For this reason, it is essential for a school to have a clear understanding of what might be causing those behaviours so they can incorporate effective strategies to quickly de-escalate problems before a school feels it is necessary to introduce restrictive practices. Some of the potential triggers include:-

All behaviour is for a reason…

EXTERNAL REASONS/TRIGGERS
Wrong environment
Activity (too easy/too hard)
Boredom, not being stimulated enough
Wrong person supporting
Not enough choice
Changes in routine
Carers putting their desires before the persons capabilities
Carers lacking experience/training
Carers attitude and body language
Difficulty making decisions
Overly sensitive to loud sounds, trouble focusing/concentrating,
Inability to regulate how hard they touch

INTERNAL REASONS
Health problems/Pain - dental, ear, seizure activity etc.
Hungry/thirsty/wet/dirty
Anxiety, under pressure, fearful,
Mood -overstimulated/confused/overwhelmed
Poor nights sleep/tiredness
Sensory Integration/Processing difficulties
Medication side effects
Certain syndromes present certain stereotypical behaviour
Numerous medical conditions can precipitate unintentional aggression and violence, e.g. epilepsy, diabetes, metabolic disorder etc.
Determining what a behaviour is communicating can be extremely difficult, but that is why schools have access to many well-qualified specialist consultants to provide help should they need it.

Our Story: why external professional advice is necessary

To fully understand my son’s needs you need to know that he has an extremely rare genetically determined neurodevelopmental disorder (‘early onset epileptic encephalopathy’). Often described as a ‘catastrophic’ epilepsy, it causes frequent, uncontrolled seizures of many types, including subclinical ones (i.e. they are not visible to others).

This has led to a severe learning disability, autistic features, language and communication delay, significant sensory processing difficulties, anxiety and demand avoidance. In addition, the side effects of anti-epilepsy drugs can lead to challenging behaviour and aggression. When he is in pain, he may also suddenly hit out (a consequence of both his sensory ‘interoception’ and his epilepsy condition).

It ought to be abundantly clear to any school or organisation that before you consider restrictive practices on a child with this medical background and its associated difficulties, you should be seeking specialist medical and psychological advice from numerous professionals: educational psychologists; Child and Adolescent Mental Health Service (CAMHS); and, of course, the specialist epilepsy consultants and nurses of the NHS.

Thanks to Scott Graham @homajob for making this photo available freely on Unsplash
Thanks to Scott Graham @homajob for making this photo available freely on Unsplash
So what advice had been sought by the school before practising restraint and seclusion on my son?

Shockingly, our Subject Access Request (SAR) obtained after my son had been forced out of his school revealed that they had not consulted anybody externally. Not the educational psychologist; not the occupational therapist who specialises in sensory processing; not the clinical psychiatrist or psychologist at CAMHS; nor did they seek advice from the specialist epilepsy nurse, or from the paediatric consultant or the regional neurology consultant. They didn’t even think to talk to their own school nurse. Despite the nurse visiting the school several times a week, she had no idea what was happening to our son – or, presumably, any other children who were being restrained. The school had limitless opportunities to seek advice both before and after their own strategies had failed, but chose not to do so.

To not seek advice before using restrictive practices on a child with a rare, severe neurodevelopmental epilepsy is, in my opinion, negligent. His medical condition and his learning disabilities are described in detail in his Education, Health and Care Plan, yet that information was ignored, forgotten or disregarded. Even direct offers of help and support from CAMHS went unheeded.

A guide to the importance of seeking advice from external consultant specialists

Government guidance
HM Government’s guidance document 2019 “Reducing the need for restraint and restrictive intervention” point 4.17, states that “settings and services should identify where expert help may be needed to inform their behaviour and support strategies, for example, from a qualified behaviour specialist, therapist with expertise in communication or sensory needs, or from a medical consultant on epilepsy”. There is no ambiguity about that statement.

Let us examine whether this happened in my son’s case.

Parents
It’s often forgotten, but the most experienced specialists with regard to children are their parents. We Iive with our children and their medical and behavioural difficulties every single day, and we develop effective strategies that work for them as individuals. Yes, the environment at school is different from home, and there may be less demand on a child at home, yet the fundamental principles remain the same.

When we later raised an official complaint with the school over the way our son had been treated, the Head asserted that they had “extensive communication” with us as parents. Unfortunately, the communication was largely one-sided. They did not tell us what they were doing (i.e. the restraint and seclusion) nor did they seek to discuss strategies or see if we could help. The only times they contacted us were by phone to tell us that our son had been taken out of the classroom. Even then, we were misled on how they were doing this and how frequently and it was often impossible to find out what had actually happened.

On the other hand, during the last six months I was emailing school almost every morning to share with them how my son’s epilepsy condition and seizure activity were affecting his behaviour, naively assuming this would be passed on to staff for their awareness and understanding. (Indeed, I have an email from the school head saying that “Your level of communication with school is exceptional and you always give us the advance notification of your son’s current demeanour”.) I would even share with them our current de-escalation strategies, again thinking this would be helpful.

The email reply from school was almost always a simple “Thank you”, and little more. No further discussion. On one occasion I asked directly had anything changed at school recently and was told nothing was different. This is astonishing when you consider how many incident forms had been written in the last six months without my knowledge, and how the use of restraint and seclusion had been introduced and increased. The communication was distinctly one-sided.

It took until a few weeks before my son’s exclusion that the school finally called us in for advice, and even then they didn’t actually use any of it. It was merely a box ticking exercise. It was too little, too late.

Parent/Carers- Always leave a paper trail. Just because you are talking to the school regularly doesn’t guarantee that they are actually listening and implementing what you are saying. ’Extensive communication’ is not ‘extensive’, if it is totally one-sided. Ensure all communication with school is in writing. If you make or receive a phone call, or casual chat with a teacher at the school gate, send an email to that person the next day outlining what was discussed, decided and ask them to acknowledge and confirm it. Take recordings of all meetings if you can. If this is refused, take extensive notes at meetings and write them up for school to officially confirm in writing what has been discussed and agreed. If questions are not answered to your satisfaction or documents delayed, ask for an immediate Subject Access Request (SAR) of all your child’s school records.


Educational Psychologists
You may recall that when we requested that school access the expertise of an Educational Psychologist, the Head refused saying that “they don’t tell us anything that we don’t already know”. This is both arrogant and foolish from a school, particularly when dealing with an extremely complex child. When questioned on this during our complaint hearing, the school suggested that Educational Psychologists aren’t used for ‘behaviour modification’.

But this is in fact the problem with the ethos of this school. We hadn’t asked for ‘behaviour modification’ for our son from the Educational Psychologist—which is clearly what the school wanted to happen—but simply an understanding of his behaviour so that the school could modify their strategies to better meet his needs. That is a distinct yet crucial difference.

Parent/Carers – Know your rights - What we didn’t realise at the time was that you do have a right to have an Educational Psychologist assessment. Any child with an EHCP is legally entitled to an Educational Psychologist assessment and report. You do not have to justify it or provide reasons for it. Nevertheless, be aware that schools and local authorities may be reluctant to get one as it is likely to cost them in the region of £400. At my son’s new school, they brought in an Educational Psychologist who provided useful and insightful advice on behaviour in addition to other issues (as did the one at my son’s mainstream primary school many years earlier).


Thanks to Kelly Sikkema @kellysikkema for making this photo available freely on Unsplash
Thanks to Kelly Sikkema @kellysikkema for making this photo available freely on Unsplash
Clinical Psychiatrist/ Clinical Psychologist - Child and Adolescent Mental Health Service (CAMHS)
It had taken a long time for us as parents to get support from CAMHS as they are overworked, understaffed and underfunded – the service is essentially in permanent crisis as their caseload is too great to manage. The referral was originally the result of a traffic accident that my son was involved in, which led to numerous sensory processing issues which needed to be addressed, specifically my son’s proprioceptive and interoception difficulties. The Clinical Psychiatrist recommended that school accessed sensory integration therapy, but the school never acted upon this.

Anticipating future problems without sensory support in place, the Clinical Psychiatrist asked school to write a Positive Intervention Plan (also known as a Positive Behaviour Plan) for my son. In order to ensure this actually took place he reminded the school that it was a legal requirement. Even more usefully, he indicated his willingness to collaborate with them to write it. Unknown to us they simply ignored his offer. Several months passed before a Positive Intervention Plan was eventually written by school staff without taking any external advice; and therein began a myriad of problems.

Parent/carers – Seek early help and interventions - A school’s own internal ‘behaviour team’ is unlikely to be able to sort out the problems of a complex child with learning disabilities, particularly if they have tried for numerous months and failed. Professional external help is required (difficult as it may be to get). Schools need to seek help early as CAMHS has an extremely long waiting list and referrals aren’t guaranteed.


Occupational Therapist who specialises in sensory integration therapy
Parents also need to know that “a sensory assessment should always take place on any child before considering any course of action with regard to a Positive Behaviour Plan (also known as a PIP) as it will serve as an aid to help schools understand the child and serve to outline possible triggers and inform de-escalation techniques”. The Clinical Psychiatrist had recommended input from a Sensory Integration Therapist for my son, and this was subsequently discussed and endorsed by specialists at several official meetings, including my son’s annual review. School chose not to engage one.

Interestingly, the school itself had undertaken an internal Sensory Assessment several years earlier, also on the request of CAMHS, but then didn’t share its findings with CAMHS. School later said that they had used this document, albeit out-of-date, to help inform/write my son’s Positive Intervention Plan. This was debatable, as recommendations from the report were ignored, such as avoiding artificial light (i.e. in the isolation room) due to my son’s photosensitivity. More importantly, the document set out that special care was required when my son is in a heightened state, as proprioceptively he cannot determine how hard he is grabbing. This was seemingly not taken into account before using physical restrictive practices. A letter regarding interoception sent direct to school from the Clinical Psychiatrist was also ignored.

Speech and Language Therapist
The only external specialist support my son did officially receive (which was out of school’s remit) was a Speech and Language Therapist (SALT) as his speech, language and communication difficulties are outlined as a primary need in his EHCP. Unfortunately, the SALT was unable to provide regular support and only ever came to assess him once per year for the EHCP. This was a shame because she was extremely knowledgeable, wrote good reports and understood his language and communication needs and behaviours very well. Sadly, the school seemed to take little of her advice on board.


Parent/Carers – Regularly review reports - Just because an official report has been written doesn’t guarantee that a school will implement it and look back at it for advice, instruction and guidance. The biggest example of this for most of us is the Education, Health and Care Plan (EHCP).



NHS: Specialist Medical Consultants
You may have noticed that I have not touched upon the crucial importance of schools seeking advice from the NHS and specialist medical consultants who deal with children who suffer from complex medical conditions. I want to leave that until next time as there are more serious issues which need to be addressed and in more detail. Children have already been seriously injured by restraint practices in schools and no doubt more will be if these practices continue.

A direct appeal to parents and carers
What I really need to say to parents is this: if you suspect restraint and seclusion are beginning to be used at school and you are starting to recognise the warning signs and/or have an uneasy feeling something isn’t right, start asking questions immediately.

Read the school’s behaviour policy and any other of their Special Educational Needs policy documents, request a meeting with the Head and ask to see any incident forms the school has written about your child. Don’t assume because school say everything is fine that it truly is.

Ask whether they have a Risk Assessment and Positive Behaviour Plan for your child and show these documents to outside agencies and specialist consultants for further comment. If school haven’t done so, request that school seeks further advice from external specialists and, if they won’t, see this as a red flag.

Take further action
I also strongly recommend that you join the excellent ‘Shame (UK)’ Facebook Group who can advise you on what to ask school, depending on your circumstances, and they will support you further.

Parents/carers: – It is also important to inform others about what you suspect is happening to your child – and if you need further proof, from my experience images are the best way of doing this as words can be twisted. To give an example, if you have been called into school to ‘collect’ your child due to ‘an incident’, you may wish to consider recording the encounter as Sharron Faiq (from Nottinghamshire) did a few weeks ago. This recording has now had over a million views on Facebook.

Her son (who is autistic) was on his first day at a new school but hadn’t got the correct shoes on, so a dinner lady told him to take them off and change them. This was clearly not a trained professional using de-escalation techniques. Several national newspapers reported that after her son had been “accosted” “cornered” and “shouted at” he “shoved her in the stomach” although it is not clear what happened next. Extraordinarily, the school called the police! The police proceeded to put her slightly-built, eleven year old autistic son in handcuffs and held him down on a table in an arm lock whilst a school teacher pinned his legs down as they waited for his mum to arrive. The culmination of this incident is desperately shocking. This is not restraint as a last resort: this is extreme over-reaction and bullying of a vulnerable child with special needs by numerous strongly built adults, and the school and police should be ashamed of their actions and be brought to account.


I recall an occasion when I was called to pick up my son from school after an incident a few weeks before his exclusion, and I was taken to the isolation room which I had no idea they were using or even existed. It was a darkened, windowless, seemingly improvised store cupboard (roughly 1 x 2m in size) with black padded walls. I didn’t initially react to the environment around me as I was dealing with my son’s distress. Only later as I replayed the events over in my mind did I realise that I should have taken a photo of it.

Not only does a photo act as an aide memoir for future reference but it makes school aware that parents are becoming suspicious and proactive and they might soon have to answer questions from their local authority. Interestingly, Sharron Faiq’s Facebook video and National newspaper coverage quickly led to her local authority finding suitable and appropriate alternative provision for her son.

We foolishly trusted the school without question
Despite Social care describing us as “skilled and insightful parents”, we had no idea the full extent of what this school was doing to our son as they were simply not sharing the information with us. We naively trusted the school to be doing the very best for him and so didn’t intervene early enough and, when we did, we accepted the school’s reasons for why specialists weren’t necessary and believed their version of events for injuries.

We had no idea that these restrictive practices took place at special schools and had no former experience of it at my son’s previous school. With our son’s communication difficulties and our (misplaced) trust in the school, it was easy to misinterpret what our son was trying to tell us was happening. I deeply regret this.

Not all schools
I must emphasise that not all schools act in the same way. My son’s new school care a great deal and have a genuine affection for him. They seek our advice where necessary, we both discuss and share ideas and we trust them implicitly. The relationship is a healthy one, they consult the necessary external specialists if needed and I don’t see any reason to intervene because clearly what they are doing is working. Most importantly, they see no need to use restraint or seclusion. What a damning indictment of the previous school.

The parental fear of being confrontational
But there are still a significant number of schools who would prefer to keep what they are doing hidden and refuse to seek external professional advice. Additionally, I know from personal experience how difficult it is to ask direct questions or be confrontational to a school about what they may or may not be doing (particularly if they claim all is well). It can destroy the relationship between school and parents, but it is necessary.

In retrospect, if I had had any knowledge of what was actually happening six months earlier, or if the school had said to us that they could not meet our son’s needs or, as I later discovered, weren’t actually prepared to meet his needs by consulting any external specialists, at that point I would have immediately removed him from the school.

By not acting sooner, the guilt you will heap upon yourself for not spotting the signs and the damage done to your child – physically and psychologically - is heart-breaking. And believe me, some of that damage is irreversible.

Next Time – Part 4: a medical tragedy waiting to happen…

Many thanks to Beth Morrison for the ‘All behaviour is for a reason’ list, and also to the moderators of the Shame (UK) Facebook page for being consistently amazing in their support for parents going through this nightmare.