TW: vomit, school harassment and discrimination, ABA and PBS, death and worsening of medical conditions, mentions food and incontinence issues and problems that may cause trauma or PTSD in some people.
By: Heather L. E. McKay
This time of the year is hideous for some, and good for others – it often depends on where in the world you live and what your lived experience is. But for those who are currently still on holidays; the anxiety and fear begin to rise as each week passes, and slowly draws towards returning to work or school.
This doesn’t just affect children either. Adults returning to work also can struggle enormously with the pressure to go back to a set routine, or to think of what to take for lunches, what to wear that won’t show accidents, or the demands and torture of seeing ‘return to work’ or ‘back to school’ advertisements plastered on stationery store windows or supermarkets, in TV ads, and junk mail/circulars.
All the stress that you felt leaving your body at the beginning of your holiday returns in full force, and you are left feeling F.I.N.E (Freaked out. Insecure. Neurotic and Emotional –special thanks to the “Italian Job” remake movie for this acronym, I’ve never been able to remove this acronym from my brain since first watching it).
For those in the northern hemisphere, returning to school or work this week, after the holiday season, can be more traumatic than returning at other times during the year, especially if you have an eating disorder or incontinence issues. Sometimes it’s because you’ve had trauma added to your load during this festive/ high stress/ or pressured period. Which can be due to many things, like: being unable to eat while others rejoiced and stuffed their bellies with holiday delights. Or you couldn’t eat because watching others eat, makes you physically ill. Or perhaps you escaped this year’s family reunion where everyone appears to pity you and constantly nag you to “try just one bite”. Or for people with incontinence issues, maybe the stress of the holidays has caused more accidents or withholding/ or possibly the rest and relaxation from work or school has decreased your withholding or accidents. Or maybe the break from school has relieved some of the tension, and you were finally making some progress, but with returning to school or work, the anxiety has returned and stopped you from being able again?
Perhaps the winter months make you depressed, or the chill air enters your bones and reminds you of how thin you’ve become. Maybe your bones ache from the cold and the idea of yet another hot soup is too much to bear. And one more trip to the bathroom in the cold is just too hard. Or maybe you tend to be the ARFID/or incontinent person who thrives in winter and consoles themselves with binge eating all your favourite hot foods that make you feel warm and cosy, but now you’ve overindulged and feel a little off. Or maybe returning to work or school means no more hot safe meals, or the use of private toilets.
Maybe your safe foods aren’t allowed in the school or don’t keep warm long enough, or the toilets are sensory hell holes which set off your SPD. Or your safe foods change texture when kept warm for too long and are no longer considered safe when you take them to school or work. Or maybe the festive food you consumed this holiday has wreaked havoc with your IBS or Coeliac disease and you no longer feel safe leaving the house, or maybe this has set back your ARFID at the same time (if you have both ARFID and incontinence issues simultaneously).
Many things affect the ARFID or the incontinent person in changing seasons, during holiday periods, and in times of routine upheaval or when we are forced to attend a school or work that does not understand our needs or our issues.
For people in the Southern hemisphere – you are hopefully lucky enough to have a few more weeks of summer holidays before the dreaded new school year starts. This time of year is where you most likely find yourself on tenterhooks waiting to see if this year’s teacher will understand, if they’ll be neuroaffirming, or yet another authoritarian that has no understanding of the harms of rewards charts and public shaming for eating what we eat, or that people of all ages can have incontinence issues, or they speak down to you, or berate you for needing what you need.
The New School Year
For those parents out there – this one’s for you.
If you’ve ever been fobbed off at the end of the previous year when you’ve asked to meet with next year’s teacher to organise supports in advance, I’m sure you’ll understand this.
I think we’ve all been there – anxiously awaiting a phone call from the school to arrange a time to meet with the new teacher, to go over the new IEP/ EHCP/ ILP or to arrange accommodations and supports for your child’s new school year and change to a new grade level or even from primary to secondary school (arguably the biggest change in their schooling life). You’re waiting for that call because you weren’t informed of who would be your child’s teacher the following year, or because they said they were too busy at the end of term 4 to see you or your child. Or the school has a ridiculous ableist policy that all kids must start the year fresh – not knowing anything about their new teachers. And you know that you desperately need to have supports in place for the first day of school, or disaster enfolds. You know because you’ve played their game before – and lost!
For whatever reason, you are waiting to hear from the school – because you know that your child will not be able to attend without feeling safe and secure that everything will be in place for them on their first day. The weeks pass, and you still hear nothing. You contact the school, only to find the teachers won’t be on school premises until the very day before school starts – and the receptionist tells you “Too bad, your kid just has to suck it up like every other child – no child gets ‘special’ treatment. They will meet their teacher on the first day, and the teacher will decide what’s needed from their”. This is ableist AF by the way.
Do you blow your top or do you sit and cry for an hour? I’ve done both, and I’m not proud of either option (not that it was a choice – it was a meltdown that overtook me).
What do you do next?.... once the anger and frustration, and complete feeling of helplessness dies down and you are able to think clearly again? Afterall, if you’ve been waiting for that phone call – some sort of expectation was put on you, or given to you by the school that this would occur, or that they cared at all about disabled students, and you thought they’d want to set up the individual student, the class as-a-whole, and the teacher for success. But from this one phone call, you have lost faith that your child will get what they need, or even remotely feel safe at all.
So, what do you do next?
1. Do you call the school back and demand to talk to the principal?
2. Do you call the Education Department and ask for some assistance?
3. Do you call a lawyer or advocate who can step in or assist you?
4. Do you tell them to fig off and apply for homeschooling (if you have that privilege)?
5. Do you give up and send your child to school anyway – knowing full well that this one day (the first day of school with absolutely no supports or understanding) will set the child back months or possibly years in their progress?
6. Do you tape legal warnings to their lunch boxes (like the one I have available on my website) – to warn teachers that if they mess with your child’s food or disability support tools, you have the right to sue them?
7. Do you send a detailed letter with the child- to give to the teacher on the first day? A letter that spells out the child’s needs – and hope it isn’t mishandled, ignored or scrapped (probably not a good idea).
Do all of these options seem ridiculous and unacceptable to you? I hope so – because they should! Because they all constitute disability discrimination.
OR perhaps you think – what is she on about, what’s the big deal -nothing will happen on the first day! You’d be wrong. I’ve experienced the atrocities of those first days – firsthand. I’ve also read stories about children’s lunches being confiscated (and the child left to starve) because some egotistical self-aggrandising teacher thought they were above the law and thought they were allowed to tamper with a human right/ with a disability tool/ with a basic necessity. They even threw the food in the bin – because they deemed it to be ‘inappropriate’ or ‘not healthy’. And as we all know by now – all food is healthy if you have an eating disorder like ARFID – all food is necessary.
I’ve heard stories of disabled children being marched in public in front of their peers for having an accident at school, or otherwise publicly humiliated or scolded. I’ve been told countless stories about teachers allowing children to sit in their own faeces all day long – which is neglect and abuse. I’ve heard so many stories it could fill a bunch of books (oh wait, I’ve already done that). It’s so sad and so prolific, but it occurs every single year – at least twice a year. Once in the Southern hemisphere in February and once in August in the Northern hemisphere – every year without fail. Schools never do anything about it, and never change and never think they are the problem. And yet there are support groups filled with parents across the globe telling these horrendous stories of abuse, neglect and other atrocities.
What I don’t understand most is the expectations from schools; that parents shouldn’t worry, or shouldn’t ask for supports to be in place before the school year starts, or that parents have no rights or legal recompense for the things schools do to our kids. They are completely naïve, ignorant and working outside the laws of many countries – and they get away with it. Why?????
No parent would willingly leave their vulnerable disabled child with a complete stranger, without that stranger being vetted by you (the parent), and that stranger understanding the very real and very necessary needs of the child, and understand how to help with those medical needs (because both incontinence and ARFID are medical needs).
But schools are the most ridiculous places on Earth (in my opinion). They actually expect parents to put their high support needs children on a bus – or push them through a gate, without the people on the other side having one clue about disability or that unique individual child. It’s monumentally foolish, neglectful, and is illegal (if you actually look into the UNCRPD and other disability laws). They have no right to expect a parent to accept these terms for their medically vulnerable and disabled children.
Sending a child to a school creates a contract between the parent and the school. This contract is payment for services rendered, like any other business supplying a service. But when you enter into a contract with a business for services to be provided to you – by law- the contract has to benefit both parties. It must be agreed upon, and both parties must be happy with the arrangement. If one party is put in a position of detriment, or one party is unfairly compensated or the contract has an unfair power balance – the contract is void. This is what constitutes contract law. But when it comes to a school – they keep and hold all the power. The parents and child usually have little to no say in anything after the child walks through the door. Does anyone else see the problem here?
The other issue is the ‘duty of care’ that all schools and all teachers must abide by – no matter what hemisphere you live in. If you are an adult with the power over a minor, and have the care of- any minors – you are required to do no harm and to take adequate care of every single child, no matter their race, creed, disability, sex etc. No if’s or but’s about it.
When schools do not adequately plan for a disabled child’s needs, they are immediately causing harm; often in the form of causing mental health issues like anxiety or fear; because not knowing they will be safe or have their needs met will always cause anxiety and fear in a vulnerable minority person. Or schools often cause segregation, or an inability to attend school by not planning; because a child can’t attend if they are not safe or don’t have what they need to learn. This then causes school ‘can’t’ and can lead to dropping out, or simply leads to inequitable education – which is also unlawful under disability discrimination law.
Schools breach their ‘duty of care’ by doing – or rather not doing the right thing in the first place. Another thing I’d like to add is that by putting all this stress and onus on the parent – they are “putting undue hardship on the carer” (which is also part of disability discrimination law), and it is again – violating the law.
Current School Policies
When a child is anaphylactic, that child is not allowed on the school premises before an anaphylactic care plan is in place, and all teachers are aware of the risks and have undertaken appropriate first aid training. Same thing occurs with kids with asthma or other possible life-threatening illnesses or conditions (eg: epilepsy, seizures or diabetes – please check with your countries laws for clarification on this). But the same respect isn’t given for kids with other disabilities; like eating disorders and incontinence. And it needs to stop – right now!
Teachers will often gaslight parents/guardians of neurodivergent children. They will say we are helicopter parents, or that we worry too much, or that we don’t know what we are talking about. Don’t let them do this to you or your child. You know your child and their disabilities best (obviously with the help of their professional medical team – Paediatrician, GP, Psychologist, Dietitian, Continence Nurse, Gastroenterologist etc) – and you know damn well when something is likely to harm them. Just because teachers are not trained or educated about neurodiversity, or incontinence, or eating disorders or many many other things – does NOT give them the right to throw away or ignore their ‘duty of care’, or to patronise you, or to ignore your requests for an IEP/ EHCP/ ILP before the school year starts. At the moment they hide behind “that’s our policy”. And if they do – you also have the right to seek legal advice and have that lawyer or advocate act as an intermediary or as an advocate for you and your child. School Policies are not allowed to overrule discrimination law.
The fact that many places require a child to be enrolled in the school for a few months before they will even consider putting an IEP in place is utter clap trap (in my opinion). These schools should be seeing disabled students who have high needs supports, as the same as a child with asthma – they need a plan in place if they are to do no harm, and to support their co-occurring medical disabilities (which many of us have several of).
The school needs to see that ALL needs are equally important and equally valid. Eg: if a child ends up with a feeding tube due to the school pushing canteen lunches on the very first day of school – (which the child can’t eat, and it’s a part of their diagnosed medical eating disorder) then they’ve caused harm). Or if they push toileting on a child who is incontinent, and the child’s encopresis and withholding increases to the point of needing a PEG or perhaps the condition even becomes fatal or life threatening – then yes – that school is liable for the damage they caused- even if it was just ‘on the first day of school’. They need to take responsibility.
Afterall, if anything goes wrong with your disabled child while at school without an IEP – they could have a lawsuit on their doorstep. Of course, most people don’t pursue this option, because 1. We don’t understand our full rights, and 2. Because lawyers are out of the financial reach of (probably) the majority of us.
Remember – if you are having trouble with a school, there are legal aide organisations and other options in different countries. Please ask for assistance if you need it, please don’t suffer in silence.
NOTE: Proper teacher training.
When I’m talking about ‘proper teacher training’ (below) I mean a proper meeting between the parent and child (or without the child, if that’s what the child prefers) and the main teacher who will be spending the majority of their time with the child. If there are more than one main teacher that will have full time care of the student, then those other teachers should also be properly trained how to support the child (preferably trained by the guardians).
Personal and direct information is often key for each individual student, in order to do no harm and to support them correctly.
You may think this requirement is ridiculous, but I can tell you, as a teacher – I don’t want to be responsible for the life of a disabled student that I have no idea how to care for, because I never bothered to ask the parent/or child what their child needs. Yes, as a teacher – they should have undertaken basic first aid training, plus training on things like; how to identify a child being abused, or how to deescalate a situation, or how to act and what to do in an emergency. But this training does not teach a teacher how to support the individual disabled student in their class.
Because as we all know – If you’ve met one disabled person, you’ve met one disabled person, and every person’s disability is different to the next person’s, and their medical diagnoses will affect them differently, and will require different things.
The arrogance of schools to think that they don’t need to meet a disabled person in order to know how to support them is amazing to me. I would never be so self-important and egotistical as to think that what I did for the child in my class last year will do for this year’s student. Or that, even if I had the same child in my class next year- that the same tools and supports will still work for them in a new year. It’s the definition of stupidity: doing the same thing over and over and expecting a different (or good) outcome. We can’t keep making the same school and IEP mistakes and expecting our kids to be cared for properly, educated appropriately, or safe.
Specialist schools in Australia have an IQ cut off requirement of (usually) below 70 – the majority of autistic people do not qualify for these schools. ‘Autism specific schools’ all use PBS in Australia (which we know is abusive to autistic people, but these schools usually refuse to not use PBS), so the only choice (for most of us) is a mainstream school (where you request in an IEP to not have PBS used) or homeschool; but homeschooling is for a privileged few. This is very similar to experiences in other countries – they just may call these types of schools, or educational institutions by different names.
Schools and training for disabled students
Schools often refuse to meet with parents about the care of their children before school starts (as previously stated), but they also often refuse to undertake disability training at all, because they think they know best; or because of the dreaded statement “we do it that way, because that’s the way we’ve always done it”. Training that is run by people with the actual disability is the best option, eg: autistic people, or epileptic people, or people who are susceptible to anaphylactic shock etc. As people with the lived experience are the only experts (according to people like Michael J Fox), but they are also the only people who truly understand what it’s like, and how to help, but also what harms us.
Schools instead often hire the support of ABA ‘technicians’ or PBS ‘practitioners’ to handle all the supports and needs of disabled students within mainstream schools. They even use these people to train their teachers how to ‘handle’ disabled people. But these people are not qualified or educated in anything other than behaviouralism which is abusive and traumatic (arguably to all people, but definitely to autistic people). ABA and PBS courses do not train or educate their students in disability in any way; they only teach ‘technicians’ and ‘practitioners’ how to use aversives (punishments and rewards), and other behaviourist techniques.
These behaviour ‘technicians’ usually have no understanding of neurodiversity or of how to support us in neuroaffirming ways; because
1. If they did know anything about neurodiversity and were affirming, they wouldn’t be doing/using PBS or ABA in the first place;
2. they are not required to, and don’t study disability as a part of the 40 hour course they complete to become ‘qualified’ (please see the upcoming training about “why PBS is bad” - to be released soon- for more information on this),
3. Because ABA and PBS could never be considered as anything but abusive conversion therapy by the autistic or LGBTQ+ communities. And
4. Because they are only ‘qualified’ to use rewards to manage your child – and we all know that no matter how much you reward a disability – it isn’t going to /and doesn’t go away (so their ‘support’ is redundant at best – abusive at worst).
But these are the ‘professionals’ that many schools/teachers rely on for information about how to ‘care’ for your child. Where is their dietitian training? where is their incontinence training? where is their medical knowledge of the human body and of disability? where is their qualification that says they are legally allowed to ‘treat’ a child with these medical conditions? – and especially where is their medical licence that allows them to interfere with a child’s medical plan that was given by an actually qualified and licenced paediatrician, dietitian, or gastroenterologist etc?
So, I say NO! – proper teacher training to care for your child, does NOT include ABA or PBS or the support of these unqualified people.
But it does require real first-hand experience and knowledge from the people living with the disability (eg: your child or from people with the disability who are qualified to train them, or from qualified and licenced medical professionals) or from the next best legal advocate for their needs: you the parent/guardian. You: Who has been delivering the advised medical ‘treatment’ at home for years and are the only legal guardian and only person allowed to give medical permission for your child’s medical needs. If you have not given a school medical permission to do something, then they are not allowed to interfere, disrupt or change a medical plan.
And yet PBS and ABA personnel have been caught numerous times over of the years, in multiple countries doing exactly that, interfering and thinking they know best. They have been caught removing food, punishing children for not eating the ‘right’ foods, manipulating children and shaming kids who are incontinent and removing their continence aides, and one horrific example in the US where they forced an autistic child to eat his own vomit.
This is the reason why we are forced to fight for IEP’s to be in place before schools start. Isn’t that the saddest and most revolting thing you’ve ever heard; that parents must tell grown adults (who are supposed to know better) how not to harm a child, and that we (the parents) need it in an agreed upon and signed document, so we can hold them accountable when something goes wrong, but also so our children feel a tiny bit safer. Because without out; parents and their children don’t trust those institutions or people and can’t have any peace of mind that their child isn’t being harmed, but also we don’t even trust that our kids are being cared for appropriately. We have gotten to a point where governments, schools and organisations (like ABA) don’t listen to us, and we feel we can’t trust anyone. How have we gotten to this point? How are they still not listening, and how are they still not being held accountable for this $hit show.
Without an IEP in place before school starts, and without proper teacher training, the following things can/could and often do occur:
· The child is bullied, which increases feelings of fear, anxiety and makes it an unsafe place to attend – which is the neglect and abuse of a minor in their care.
· The child is neglected and makes the condition worse (eg: they sit in their faeces all day, or they starve) – which is a human rights violation.
· The child has their supports taken away (eg: their lunch or snack food, or incontinence wear) by ignorant teachers or aids (or ‘technicians’) which is illegal (human rights violation and also constitutes discrimination) – no adult has the right to remove a disabled persons disability tools.
· The child is not given time or access to their tools, which causes the worsening of symptoms – which is medical neglect and interference with a medical condition. It’d be just as bad if they denied an asthmatic child access to their Ventolin.
· The child feels ashamed or fearful of requesting help because not having an IEP before school starts could constitute ableism as a cultural problem within the school. Eg: by telling families that disabled students are not allowed to request help before they are academically failing – they are being discriminatory against kids with disabilities – these kids need equity to achieve and attend the same school and learn equitably beside their peers, but being denied support tools is actually direct discrimination.
Example: If you are at a workplace, and you are a wheelchair user, but your boss won’t let you discuss the need, or, the installation of a ramp or a lift/elevator until you’ve proven for 3 months that you are failing at doing your job without that accommodation – this represents direct and clear disability discrimination in the eyes of law worldwide… (UNCRPD). So yes – it’s the same laws for schools – because schools come under discrimination law of each individual country (ADA for the USA, Disability Discrimination Act for AUS, and Equality Act for the UK etc). No school is exempt from discrimination law…… even if they have to follow the IDEA in America (because they are a public school) they are ALSO mandated to follow the ADA as well/ simultaneously – one doesn’t exclude the use of the ADA (private schools come under the ADA in the US).
You see – anything that occurs at a school because of your child’s disability, that the school hasn’t prepared a medical care plan for, (and stuck to it) – is therefore (in many circumstances) liable for any consequences. It might be worth mentioning to them if they start to push back, try to renege on an IEP or EHCP, or generally are being defensive, self-serving, or ridiculously obtuse or problematic. Remind them that it is their legal responsibility and liability if anything goes wrong when a child has a medical condition (like and ED or incontinence, asthma or diabetic etc), if your child gets worse because of their actions, or if discrimination occurs because of the child’s co-occurring disabilities – which the school has been informed about, but not planned for.
* PLEASE SEEK PROFESSIONAL MEDICAL ADVICE AND LEGAL ADVICE for anything that is contained within this blog, this blog does not constitute legal advice, but hopes to help parents realise they have avenues to seek legal aide or advocacy in the event of discrimination – never suffer in silence – you are worthy, you have rights, and your child likely matters more to you than anything – you both deserve protection and support.