Jargon… is it only for professionals?

As parent carers (and their representatives), we often ask professionals to avoid using jargon or acronyms. Apart from the fact that these make understanding difficult, acronyms in particular can mean many things.

In a recent example, my daughter was asked by her GP if she was using a wheelchair due to SPD.
Both of us immediately thought he meant “Sensory Processing Disorder” and were quite confused as to why that would require a wheelchair. It is one of her diagnoses.
In fact, he meant “Symphysis Pubis Dysfunction”. She was pregnant, and it was a reasonable assumption (correct, but not the primary reason for her wheelchair use).
Moral of the story: avoid acronyms!

But today I am thinking about language that parent carers begin to use which may not sound like jargon but is… and in the same way as medical or professional jargon, there is a huge risk that “lay people” will not understand. In this case, “lay people” include extended family, parents whose children do not have additional needs, teachers, therapists, doctors and all kinds of professionals.

Are we shooting ourselves in the foot by using such language, that feels really relevant, but that opens us up to misunderstanding and can even diminish our children’s needs in the eyes of others?


If you are the parent of a child/young person suffering from anxiety, or who has autistic or ADHD traits, you will be familiar with the notion of “masking”.

To ‘mask’ or to ‘camouflage’ means to hide or disguise parts of oneself in order to better fit in with those around you. It is an unconscious strategy all humans develop whilst growing up in order to connect with those around us. 

However, for us autistic folk the strategy is often much more ingrained and harmful to our wellbeing and health. Because our social norms are different to others around us, we often experience greater pressure to hide our true selves and to fit into that non-autistic culture.

Dr Hannah Belcher, from the NAS website

“Masking” is a very real and traumatising strategy employed by any child who is suffering from anxiety, so it’s no wonder that parent carers use the word so frequently once they understand it. It describes the child who is “fine in school”, then arrives home sobbing uncontrollably, or so exhausted that they curl up on a sofa and stare into space for hours, or comes home screaming abuse at mum, hitting or breaking anything in their way.

My biggest lesson about masking has been the following: most people cannot control how, where or when they mask. Many are not even aware that they are doing it. This is particularly true of children.

Those of you who have been following me on my Tugboat journey will have gathered that I like to explore different perspectives on the same issue. Today is no different!

If you are a professional…

When you hear a parent talk repeatedly and with passion about something like masking, take a breath. Do not assume that they have jumped on a bandwagon, have “self-diagnosed” their child.

Try this as a starting point:
In front of you is a parent whose child is not happy. In response, this caring parent has possibly tried to ask for help, has researched their child’s behaviours and characteristics and has learned from other parents, from internet searches, from support groups. This is valuable evidence that can help you help the child – if only you accept it.

If you are a parent…

It’s so easy to overuse a term that fits so beautifully once you find it. And before you know it, in the world of social media, that word is EVERYWHERE. But do all those using it truly understand it?

I think it’s probably fair to say that most people have a vague understanding of “masking” now, in a way that they did not five years ago. But this means that it has become overused and for the most traumatised children, the word has become devalued. Don’t forget, too, that every single human being masks – it’s the reason we are able to be social creatures. But in our world of additional needs, we use the word to describe a child in fight/flight mode, who is leaning on a survival strategy day in day out. That causes trauma and will lead to serious difficulties.

In other situations, you will be talking to people who have no idea what you mean when you use the word. Often, these will be professionals, and they will be listening to you and coming to their own conclusions about the meaning. “Masking” is an active verb. It’s all too easy to understand it as a conscious choice made by an individual. So either the child has such good control of their emotions that they must be able to make other choices. Or they are defiant. Or they are manipulative.

It is our responsibility as parent carers, and as the person choosing the words we use, to ensure that they are understood in the way we intend.

Whenever I am talking to someone about my child’s “masking”, I start with an explanation of the term. I explain that in the case of an autistic child, masking is very much like a survival strategy that keeps them safe.
It’s rare that they are aware of doing it, only how very tired they are when they finally find themselves in a safe space.
For those children who are aware that they mask, many cannot control it. This adds a level of panic because they are not behaving in a manner true to themselves, but nor can they change their behaviour.
When the “mask” comes off, many children have a violently emotional reaction. Have you ever put your palm over a tap to stop the water coming out? When you remove your hand, how strong is the flow of water?
Most of our children struggle with communication and their emotions – far more so than “average” children. So when that mask comes off and they feel a gush of complex and often contradictory emotion, they are overwhelmed. It’s deeply frightening. So it’s no wonder that we parents are suddenly faced with children in meltdown or shutdown states.

Now I’ve explained what I mean by masking, I will try and take the time to check in with the person I’m speaking to. How does what I’ve said make them feel? Is it something they recognise? Have I made them think a little differently? It’s really worthwhile asking those questions out loud. Apart from anything else, if you treat someone in the room as an equal, they are rather compelled to do the same to you!

Only at this point will you be able to have a real discussion because you are now all speaking the same language.

Jargon goes both ways

Don’t forget to check your jargon! You may not even realise the words you are using are jargon to someone else.


Strengths-based model?

In the UK, support for children with additional needs or disabilities starts from what is known as a “strengths-based model”. This is a psychological approach that focuses on a person’s strength and ability to control their own lives, and starts from the position that this person can and will be resourceful and resilient when faced with difficult situations.

If you are the parent of a small child (or indeed not so small) with additional needs or disabilities, you may well be seeing red already. Most of us approach systems for support because our child cannot control their own life, even when compared to their peers, or has been so knocked about by life that they have little resilience left. And yet…

When systems first identify that a child has additional needs, they bring overly bright smiles to the table and ask us to “focus on your child’s strengths”…

Don’t ignore the problem!

If I walk into hospital with a broken bone or a bleeding head, I do not want you to ask me which parts of my body are working well or feeling good. At least not at first!
Please fix the bleeding first! Deal with the crisis, the reason I am here and then later we can talk about the fact that I can use crutches because my arms are fine.

When a parent approaches you because their child is not reaching a certain developmental milestone, or they are crying every day after school, or they simply cannot recognise their letters… deal with that problem first. Now is not the time to put on that huge (and rather obviously fake) smile and tell them that Sam paints beautiful drawings, or that Lou is “such a happy child”.

Please help us find solutions to the problem that brings us together.

Find or create “stable”

The strengths-based approach that much of our lives centres around depends on a certain degree of stability. To be resilient and resourceful, we have to have a functioning “owl brain” (https://www.brightfuturescounselling.com/post/the-lizard-dog-and-owl-explaining-the-brain-to-children). Our pre-frontal cortex, responsible for analysis and problem-solving, has to be “online”. And that can only happen if we feel safe and stable.

Here’s the thing: many if not most children with additional needs only rarely feel safe. They are often confused, anxious and stressed. They live in near constant panic because they are rarely in an environment that suits those needs. So their cortex, their owl brain, is most often off-line… and yet we ask them to perform tasks that only that part of their brain can do!

So once you have helped fix the immediate crisis, the “bleeding”, your job as the adults around that child and their family, is to help them create “stable”.

Think about the physical environment and its impact on that child. Think about the demands of the day, physical, emotional and psychological. Can the child manage a change of classrooms? Is the maths lesson at the best time of day? Do they need breaks in a quiet space to self-regulate?
How can you put the child first within the highly regulated environment of a school, a hospital? It might take three hours with a play therapist to perform a blood test – but if you take that time, the next will be much shorter…

Now! Build on strengths

Only now can you start truly thinking about strengths. Now that you have a safe, regulated child in front of you, working with them and their family to discover AND BUILD on their strengths, resilience and resourcefulness is possible, and exciting!

Don’t even start if you are not prepared to change the way you work to include those strengths – that would be unfair.

If a child is exceptionally good at science, what will you put in place to encourage that and allow that child to excel?

If they love running, how can you add more running to their day?

If they delight in helping younger children, can you set up a mentor scheme within your school or club to allow them to do more of that?

In conclusion…

The strengths-based approach is an incredibly valuable one – but like a sticking plaster, it works if the wound is small, identified quickly and cleaned first. It is not appropriate when faced with a dirty, bleeding open fracture.

I like to think of it as akin to preventative medicine. If we can learn to eat well, exercise, practise self-care to maintain our emotional wellbeing, we can prevent all manner of health problems as we grow older.

If – and it’s a big if – we are able to identify a child’s needs before they go unmet, then we can use a strengths-based model to equip them with the tools they will need to handle life. The reality is that most children with additional needs are identified because those needs have not been met. In that case, you cannot use a sticking plaster. Emergency medicine first please, followed by convalescence and rehab. THEN and only then can you start thinking in a strengths-based way…


How do you Holiday?

It’s late summer as I write this and I know that many families like mine, like yours are reaching the end of their energy reserves. Our children with additional needs more than most require a “village” to raise them. And the support systems of school, clubs, respite seem to become very scarce indeed during the holidays and this is especially true of the long summer break.

Does your child sleep? Can they ever be left unsupervised? If the answer to these questions is “no”, chances are that you have now had weeks of unending alertness and your body and brain have had enough. Not to mention juggling work, finances, extended family who may just add to the chaos. So… what’s to be done?

The first thing I would suggest is to throw out the “should” book. The stories we tell ourselves of what family life “should” look like. In this book, the holidays are so often portrayed as a blissful time with siblings playing happily together, parents watching on with tender smiles. We need to pay attention to what our children and we need – whatever that may look like.

In my case, going away on “holiday” was never an option. The stress of transition, the difficulty in managing medical supplies and the uncertainty of what that holiday might look like meant that going away was absolutely not worth it.

Our three children had very different needs, so we tried to meet them as and when we could. Mostly we stayed home and tried to keep normal daily routine going – that was the easiest way to thrive. Our daughter even had school uniform dresses because she found the change too difficult (I did buy different colours of school dresses for my sake!!). She would often plan lessons and “school” activities as a way of coping with the fact that her routine had been disturbed.

For our youngest son, the holidays usually meant badly needed rest, so he was often in bed much of the time. Anything more ended in tears of exhaustion.

And our eldest thrived in holiday times. He found the routine of school dull, unchallenging and restrictive, so the freedom of the holidays was a relief – IF he was given complete control! And he often found the first couple of weeks very difficult as he managed the change from one environment to the next.

Seemingly small things allowed us to create really happy memories – one summer, we splurged on three boxes of Lego that gave us a wonderful family afternoon. Not much maybe, but it’s a memory all of us carry to this day.

Finding somewhere that feels safe and comfortable for days out, or even half days can be remarkably replenishing. Each year, I would try and save for a year’s pass to Chessington World of Adventures, or Wisley Gardens (those happened to be close and work for us). In fact, we mostly used those for after school picnics, never venturing on the rides, but enjoying a space that felt safe.

Maybe one of the biggest and most challenging “shoulds” that I gave up was the notion that we should stay together as a family unit during holidays. While we did this during the summer, Christmas was the one that felt hardest. But for a number of years, we split the family because it was better for everyone. One child went to their grandparents (sometimes with one parent) and the other two stayed home. This gave everyone a break, and allowed the children to have their very individual needs met. Otherwise, how do you manage one child who cannot leave home, with another who desperately needs to get out?

We need to build a new set of stories I think, to share with each other how holidays can be so that we and future families allow themselves to trust their instincts and holiday in the way that suits them. To that end, I’d love to know how you holiday! Please share some ideas in the comments 🙂


To EHCP or not to EHCP…. that is the question

And a controversial question it is. This post will most likely determine whether you run towards me and Tugboat with a smile on your face, or run screaming in horror. Both are completely appropriate depending on your experience, your circumstances, your beliefs and opinions. I would love comments, but I will not tolerate any aggression (kindness is paramount in everything I do and if I’m to inhabit a corner of the internet, I’m determined that it should be a safe space for all).

The short answer to the question is – it depends. An EHCP will not necessarily be able to provide the accessible education your child needs. For some, it’s essential. For others, a strong relationship with a mainstream school who are committed to true inclusion will render an EHCP irrelevant and sometimes even problematic. For others still, while an EHCP is absolutely necessary, the school your child needs doesn’t exist…

What is an EHCP?

We are hugely fortunate in the UK to stand on the shoulders of disabled people who have fought long and hard for rights, freedoms and legally binding support for our children. This should never be underestimated and it’s profoundly saddening to realise that there is still a need for people to fight for these rights.

In terms of education for children and young people with additional needs and disabilities, this comes in the form of “Education, Health and Care Plans” – legally binding documents that describe the special educational needs of a child and the provision needed to help them meet the outcomes that have been determined.

In theory, it’s a great system. The legislation is clear and the bar for an assessment is, at first glance, very low. There’s a but… there are actually many buts!

When the legislation was put in place, in 2014, resource did not accompany it. The implementation of that legislation is far more complicated than its writing, and local authorities have finite and seemingly decreasing amounts of money to work with. The awful result is that the system works for those who know how to work it. I’m convinced that every child who has an EHCP needs it. But far from every child who needs an EHCP has one.

Should your child need an EHCP, there are resources to help you through the process, and many consultants and private professionals who can guide you through from request to tribunal if needed. If you are in the midst of this process, search online for your local SIAS (SEND information and advice service), and use IPSEA and SOS!SEN for additional support.

At Tugboat, we can provide parent-led support through the EHCP process up to the issue of a final plan, but would signpost you to other services should you need to access the appeals and tribunal system.

Benefits of an EHCP?

There are many reasons why a child with additional needs may need an EHCP and the legislative criteria for an assessment are low. To request an assessment, you must simply prove that:

  1. HAS or MAY HAVE special educational needs or a disability and
  2. MAY REQUIRE additional support through an EHC Plan.

Sounds simple, doesn’t it? Yet in the implementation of the law, things become far messier.

If you are in the midst of this process, search online for your local SIAS (SEND information and advice service), and use IPSEA and SOS!SEN.

An EHCP may or may not be necessary for a mainstream school to put the necessary support in place for your child. However, if your child needs a specialist setting, they will need an EHCP – few if any such schools accept children without them.


As a parent who has had three children with ECHPs, I can say that an EHCP is something of a blessing and a curse. This is a system that allowed my children to access education where they simply could not otherwise. But it’s also one that they have found to be isolating and problematic in various ways.

And… an EHCP has a life of its own. The process of obtaining the initial one is almost always long and traumatic, and this tends to affect the whole family. Once you have an EHCP for your child, this is reviewed annually which can be a significant task.

One of the most heart-breaking stories I hear again and again is that of a family who have obtained an excellent EHCP which describes a child’s needs and the provision required extremely well and is absolutely individualised…. but so much so that no school feels able to meet the needs and families find themselves unable to find a suitable setting.

EHCPs are wonderful and essential to meeting the need of many children. But it’s really important to realise that our children live in a very imperfect world. Even if we are able to create a perfect educational provision, they will eventually leave that and enter the messy society we all know. And transition from EHCP to “nothing” can be brutal…


EHCPs can feel essential for many families, because they provide a legally binding document that in theory can ensure our children’s needs are met. Often, this is a result of breakdown in relationships with the school such that families are left feeling unheard and children become trapped in their additional need and disabilities.

The important thing to take away from this post is that EHCPs are a very necessary part of the SEND system. If your family needs one, you will benefit from support to navigate the process, especially to ensure you keep hold of “family life” in the midst of a stressful system.

However, there is a great deal of support available from schools and other systems for children with additional needs without an EHCP, which is far less spoken of and yet is the only option for the vast majority of our children.

I’d love to know what your experience of EHCPs has been… and maybe more importantly what support your child has had without one. Comment below 🙂


Life and Hope…

One of the most important messages I want to give those of you who find Tugboat, is that life can be good and hope is always worth looking for.

So I’m going to share some of my personal stories on this blog as I go – to give you some very real examples of life with disability and additional need, and how it is possible to find a way to “good”.

Big news for me! I recently became a grandmother! My amazing daughter has complex needs. She needed a special school, and even that didn’t work out. It’s fair to say that she has had some really dark times.

And yet…. at the tender age of 20, she has left home, found herself a rented flat, navigated employment, benefits, household bills AND found the love of her life and had a planned baby!

The new family is doing so well and I’m incredibly proud of them. She is already a remarkable mother, beautifully responsive to her baby’s needs and communicating to nurses, health visitors and social workers like a pro.

Neither of us would have believed this even three years ago – and yet here we are! Hers is really a story of hope fulfilled.


Welcome to Tugboat!

Launching any new enterprise is scary and exciting – and the ratio of those two emotions changes more often than is comfortable!

So… I’m welcoming you all to my little world, where my approach to the complicated systems put in place to support children with additional needs is practical. While legislation and rights are very, very important, they don’t always apply to everyone, and they are only rarely THE solution.

As a mum to three such wonderful (and infuriating) children, I’ve slowly learned that we need to find a way to live life first. What I hope to do with Tugboat is help you navigate your particular set of circumstances, to be able to live the life you would like to rather than one in which your every waking moment is focussed on paperwork and advocacy.

We’ll be launching officially in September, because I’m newly a grandmother!! But don’t hesitate to send me an email if you’re interested in working with me 🙂 benedicte@tugboatsend.org