Author: Benedicte

parenting, Preparing for Adulthood, SEND approaches

Why Legal Rights Matter: Protecting Children with SEND

Benedicte

This week a New Year dawned… traditionally a time of hope, reset, resolutions for better times to come.

For me, this holiday belongs firmly to the “Christmas break”: a frequently challenging time in my family.

We juggle the joys of autism and disability with the challenges of sensory overwhelm, eating difficulties and severe fatigue. Christmas tends to bring all those challenges to the fore.

The new year is often a time for us to recognise that we have made it through another twelve months – that one of our children has cheated death for a whole extra revolution of the earth. While they were still children, we took the time to hope and plan that all three would finally find some peace, make a little progress towards independence, maybe even a moment of happiness. Now they are young adults, our hopes have shifted a little, but we are still on a journey towards independence and happiness.

Life with disability is reliant on the help and care of others – family, community and public services. While it’s no doubt true that it “takes a village to raise a child”, disability transforms this phrase from proverb to necessity. And crucially, the support of public services is only present thanks to legal protections. Help of this kind costs money and in practice, governments only spend money where the law requires them to do so.

So for my family, for my children, threats to legal protections are far from abstract. They are the difference between life and mere survival. Tragically, I’ve known too many families for whom failures to uphold those legal protections led to real harm and even death in some cases.

This New Year’s Day brought with it the opposite of hope, in the form of a couple of news articles – publications such as The Times are not easily ignored and this piece requires a response from any of us working and living in the world of SEND. While this is asking yet more of parent carers who are already pushed to the limit, silence is too great a risk: our children’s lives and futures are in the balance.

The shocking claims made leave us in even greater uncertainty than the confusion of the last few months. They also do little to allay the concerns many of us have felt in the wake of the government’s “national conversations” about SEND reform – conversations which were as far from dialogue and consultation as it is possible to be. Parent carers up and down the country have come away from these conversations frustrated that they had no real opportunity to take part and that the Q&A sessions were too carefully curated by the organisers.

The Times article demonstrates a staggering misunderstanding of SEND and the system currently in place. I wish I had the confidence that this misunderstanding rests solely with the author. I fear instead that it extends to the highest levels of decision making, placing disabled children at severe risk of harm as a direct result.

I’ve considered three aspects of the article here, based on my experience as a parent carer to three disabled young people and working as an advocate for many other families over the past 15 years.

EHCPs to be restricted to those with the most severe and complex requirements

All three of my children needed EHCPs (education, health and care plans)… One had such glaring physical disabilities that his needs were identified in good time, and he was provided with additional support from the age of 4.

For the other two, our story is far sadder and tragically familiar. They struggled with “invisible” disability while being bright. Lack of assessment, acknowledgement and appropriate support led to catastrophic mental health breakdown, and it was only in the face of this that help finally started.

When it becomes clear that your child has significant difficulties, you are thrown into the deep end of an oceanic whirlpool, usually with no flotation device. Caseworkers, health visitors, SENCOs, social workers, forms to fill in, support to claim… there is no other choice but to learn a set of complicated rules, many of which are legal. Parent carers will be very familiar with this language and the acronyms that accompany it, but a summary of the legal document referred to by the Times article is important:

An EHCP (education, health and care plan) is the legal document referred to in the article and is the only means by which a child’s SEND are legally recognised and met with appropriate provision.

The legal framework we parent carers are so keen to see upheld requires the authorities to:

  1. Assess and identify special educational needs.
  2. Determine the special educational provision required to meet those needs.
  3. Deliver that provision (and review progress, need and provision annually).

Let’s start with the reality that the current legislation is not in contradiction with the article’s sentence. While the legal benchmark for an assessment of educational need is low, EHCPs are only issued to children whose “requirements” are severe and complex.

For years, public services have been stretched to breaking point. It’s a well-recognised refrain that local authorities can now only deliver their statutory duties (those enshrined in law).

In the world of SEND, this means in practice that your child will not be assessed for learning difficulty, functional life skills, coordination difficulties, speech difficulties, mental health or neurodevelopmental conditions that may impact their learning. Those families who can afford private assessments do so in the face of waiting lists measuring years.

Unless…

Unless a formal request is made for an EHC needs assessment – the first legal protection for our children. Thanks to the legal framework that kicks in at that point, this is often the first time that a child will be seen by a professional with the training and expertise to correctly identify their difficulties and the support they need.

Importantly, local authorities’ reluctance to complete a holistic assessment result in EHCPs that do not fully identify children’s needs and are often lacking in the provision that child requires in order to make the progress we could expect.

Current legislation stresses the importance of early identification and early intervention. The current government’s priorities continue to align with this. Yet resources allow only the bare minimum, and it is only with the legal protection of an EHCP that a child’s needs can be met early.

I work with families and children whose needs have increased exponentially due to a lack of early intervention. If we fail to deliver the support that is needed, we lay the path for far greater need at far greater cost.

Delivery of special educational provision follows the same pattern as the assessment of need. With resources so limited, schools cannot deliver what they know to be necessary. Unless that provision is legally required.

For decades, families have learned that the only way that their children will be given their entitlement of a free and appropriate education is with the support of a legally binding document that clearly specifies their need and the provision they require.

The SEND crisis is not one of legislative overreach – it is one of resourcing and our societal view on education and disability.

Thanks to the legal protection of their EHCPs, my children were all able to continue with their education. With the right educational support, we overcame self-harm and suicidal ideation. Thanks to that legal protection, they reached adulthood and are on the way to independence.

Without it….? There is a very real possibility that they may not be alive today.

If EHCPs are to support only the children with the most severe needs, how will those with minor or moderate needs be protected? And if parents are removed from the conversations? How can we have any confidence that they will not fall through the gaps?

Parents whose children have moderate mental health and developmental needs are set to be stripped of their legal right to certain supports

“As a parent, you know your child best”.

I have heard this refrain countless times from health professionals, teachers and social workers. When collaboration works well, it is the cornerstone of supporting a child to make progress. As a parent, I consider myself the key partner in any effort to improve their wellbeing and ability to access learning.

I can teach you how to support my child because I have been doing it for a long time, and I am the constant in their life.

As parent to autistic children, I can teach you how to communicate with them: learn the micro-signals of distress that are unique to each of them, teach you the little things that allow them to understand what you are trying to tell them.

No child is able to speak up fully for themselves, simply because they are children. Our disabled youngsters have even greater limitations and are absolutely reliant on their parents as advocates. It is profoundly concerning that any proposals should remove parents from discussions regarding their children’s education and wellbeing.

A strength of the Children and Families Act 2014 was to emphasise the importance of the child’s voice in education and particularly in terms of supporting SEND. Throughout the act and its code of practice, the importance of including the parents is a golden thread that reflects the reality of raising a disabled child.

The language used by the Times here is curious and indicative of a writer with less experience in SEND matters than might be required for such an inflammatory article. Whose legal rights are set to be stripped: the parents’ or the children?

It seems that both may be at risk, which is deeply concerning: without parents’ legal ability to request assessments or influence provision, children could be left without the advocacy they so critically depend on.

Let’s be clear: in the current system, parents do not have any legal rights to support.

They do have the legal right to request an “education, health and care needs assessment” directly from the council. This instigates the identification of need referred to earlier and triggers a right of appeal when a decision is made. The communication between parent and council throughout this process is minimal and the school is already heavily involved.

Only parents whose children have been issued an EHCP (therefore, those with the most severe complex requirements) have a “case officer” and have some communication with the council.

The article does not suggest that parents of children with EHCPs would lose these rights…. Yet it is difficult to see what benefit would be reaped by preventing parents from requesting a needs assessment.

While parents do not have legal rights to support, they have the right to request assessment. They also have the right to state a preference for the school or setting of their choice. Historically, legislation emphasises the importance of children being educated in accordance with their parents’ wishes.

Once more, this speculative article suggests the government may rewrite legislation in ways that threaten principles of independence and autonomy — principles I consider central to British values.

The Times article claims the rise in EHCPs has been driven by increasing numbers of children diagnosed with autism and ADHD.

This is a bold claim indeed and mirrors a worrying trend that has led to a recent review in the NHS of diagnostic rates for mental health and neurodevelopmental conditions. As a small aside from me, I believe strongly that the two issues should absolutely not be conflated. Research already suggests that rates of ASD and ADHD are significantly under-diagnosed.

Importantly, an EHCP does not depend on a diagnosis. It is issued when a child’s special educational needs have been identified by qualified professionals as requiring a level of special educational provision beyond what a mainstream school can offer.

Many (most) children with autism and ADHD do not have EHCPs and are supported in mainstream schools with or without additional support provided by their school. Those who do have an EHCP are children with the most complex and severe needs.

The author of the article does not explain that many children with severe and complex needs have more recently received a diagnosis of autism or ADHD in addition to other needs such as learning disability. This reflects better understanding of neurodevelopmental conditions and has allowed specialist schools to better meet these children’s needs – it has also shifted the statistics quoted in the article.

A similar shift has happened in the designation of specialist schools: those that were once for children with learning difficulties or learning disabilities, are now labelled as focussing on children with autism. The children themselves are the same!

My daughter’s school was originally a school for “vulnerable and sensitive children”. While she was a pupil, it changed to become a school for “autistic children”. This reflected a better understanding of autism (particularly in girls) and allowed the school to make a clearer offer of provision…

Questionable public spending linked to EHCPs

The author writes with dripping condescension of money being frivolously spent –  on 1:1 sessions rather than a teaching assistant providing support for several children and on activities such as skiing lessons, falconry and equine-facilitated learning. No detail is given about the frequency of these activities, the reasoning for them or how they support children with SEND.

Parents of disabled children will easily explain the difference between 1:1 support and what a teaching assistant can provide in a mainstream classroom. Those whose children require different learning opportunities, including animal-assisted therapy and learning will explain how that support leads to academic progress and importantly teaches them the crucial life skills that will give them the best chance at independent adult life.

Importantly, local authorities are meticulous about justifying SEND expenditure – and provision is determined by qualified professionals. This is an evidence-driven system at every stage. Parents, schools and professionals are challenged at every turn to ensure that taxpayers’ money is not unduly spent, a fact notably absent from this and many reports on SEND.

How can we protect our children’s right?

Right now, the law is the law. For families navigating the SEND system today, tomorrow and until things change, the next steps remain the same as they were yesterday. The Children and Families Act 2014 describes how schools and local authorities must support children with SEND. The SEND tribunal continues to afford families the right of appeal where they do not agree with a council’s decision.

Thanks to their EHCPs, my children have grown to adulthood. Their different stories reflect their different needs but demonstrate the importance of these legal rights:

My eldest received specialist support that allowed him to recover from severe behavioural difficulties, learn critical social skills and develop strong family ties. Without the specialist educational setting he required, we would have experienced complete family breakdown, and he would be in long term social care housing. Ongoing legal rights support his journey to independence with the understanding that it is a longer journey than most!

My second child was severely traumatised in mainstream primary school. Her EHCP ensured that she attended a suitable school where she began a journey of recovery, while continuing her learning. It was too late, but with the support of her legal rights, we were able to manage a subsequent breakdown with alternative education that allowed her to find her way into adulthood. She is now married with two young children for whom she advocates with admirable strength and knowledge.

My youngest received his EHCP at 4 years old. Thanks to that legal support, he remained in mainstream school until he was 9 years old. Thanks to that legal support he then joined a school in which he was finally not the only wheelchair user, and learned what it means to belong and succeed. Thanks to that legal support, he changed school to find his “niche” – the middle ground that is so rare for “square pegs”. Thanks to his legal rights, he embarked on a supported internship at 18 years old and has been employed by his placement ever since. As a result, he has a chance at independence in adulthood.

In my work, I will continue to support strong, collaborative relationships between families and schools as well as local authority officers because coproduction and collaboration so often result in the best decision for a child.

In parallel, it will be critical for all of us working in this world of SEND to ensure that decision makers and law makers understand the true consequences of their actions.

As parent carers, we need to counter the negative and discriminatory picture being portrayed of our children by sharing our real stories. A good place to start is “Save our Children’s Rights”. Following such organisations as Special Needs Jungle, IPSEA, Contact,  and many others will give you up to date information about the nature of the upcoming white paper and what you can do in the face of potentially dramatic changes in the services available to support your child.

Each local authority has a parent carer forum whose purpose is to gather parent carer views and work with local authorities to improve services for disabled children. They in turn pass those views on to the National Network of Parent Carer Forums. The NNPCF is far quieter on these matters than I had hoped, but I would absolutely urge parent carers to contact their PCF, share your views on these proposals and request that they be passed on to the NNPCF.

Change is rarely achieved as a result of one strategy; now more than ever, every opportunity to make our voices—and those of our children—heard must be seized.

Our children face a life full of challenge as a result of disability.

History tells us that education is key to better lives for all children. Our children are no exception.

History also reminds us that equality and equity are two very different things: legal rights ensure equity for children with SEND.

In England, we are fortunate to have been championed by past parents and past disabled adults.  Thanks to them we reached an understanding in legislation that every child is entitled to a suitable education: one which meets their individual needs to allow them to make the best progress possible and reach the best outcomes in life. And when we make equity a reality, people thrive beyond the barriers placed on them by disability. I cling fiercely to the hope that we still believe this.

The only way to ensure equity, to ensure that our disabled children have the chance of a fulfilled life is to maintain the legal rights enshrined in the Children and Families Act 2014 – which can fundamentally be summarised as a right for their needs to be identified and met.

Uncategorized

Coproduction on the frontline of SEND

Benedicte

Contradiction and compromise abound in the world of special educational need and disability. We have good legislation yet far too little resource to implement it. And it is crucial that our community keep working with elected officials to ensure they realise the importance of those legal rights, but it’s equally important to find a way to make today’s system work for families. They can’t wait for next year, or the next bill…

parenting, SEND approaches, Therapy

Making Friends

Benedicte

One of the most common themes I encounter as a parent carer and as an advocate for other parents and disabled people is a profound social and emotional isolation. Our lives are just different or chaotic enough to preclude the chats at the school gate, visits to the park or gentle walks to the shops in which small words and conspiratorial glands lead to play dates and friendships both between children and parents.

Instead, we find ourselves apart, “othered” by our circumstances. Our children all too often struggle to make or maintain friendships and we retreat from a world that seems to find us “too much”… or simply misunderstands and maybe fears us.

In response to this experience, I have become hyper-vigilant and hyper-aware of any opportunity for connection. I am primed to notice any potential path to friendship. As a result, I experience serendipity on an unusually frequent basis.

Serendipity: the occurrence and development of events by chance in a happy or beneficial way

In reality, serendipity is closely associated with its human element – one must be open to such happy discoveries in order to notice them even when one is not looking for them!

Much of my work relies on an expectation that there will be support somewhere, that there are always “next steps” in the face of hardship, suffering and despair. And sometimes, those next steps are very tiny and unexpected. Many of the families I work with have almost unknowingly found their solutions before I meet them, but not recognised the remarkable work they are doing. So initially, I take the time to help them see the love and dedication they have and are showing for their children: the research into their children’s “conditions”; the time taken to consider previously unconsidered parenting styles or “therapies”; extra-curricular activities, tutors, clubs that they never realised existed.

In turn, I share the knowledge I have garnered over more than twenty years. That might be in the form of tiniest tips to support a child in meltdown, or formal work to ensure public services are doing as they should. It could be finding the elusive “self-care” that we all speak of so highly but struggle to implement. And often, it’s about signposting a family to resources that are only catalogued in our collective mind – the community knowledge that is so difficult to create these days (no, the “local offer” websites do not solve this problem – a discussion for another day!).

Through all of this, the connection I forge with these families is all the stronger when it is dynamic. By learning from them, I empower them with the realisation that they can do far more than they believe themselves able. And in that relationship, my hope is always that they feel able to continue their journey without me – when the time is right for each.

Note to those Wise Ones who choose to read this book – pay attention to the photograph, especially to the “trolley”!

One of these encounters has led me to the astonishingly beautiful and moving work of Anita Hughes, whose book “Making Friends” I have just devoured on a sunny May Saturday.

Anita (her style and manner draw me to use her first name – I think of her as a friend I have yet, and hope one day, to meet) is an educational psychologist who has developed a social and therapeutic group “intervention” (oh my, how I hate that word, but it seems the closest fit for now) called “the friendly group”.

Thrilled and delighted at the notion of a therapeutic approach to friendship and social interaction for autistic children (well.. children who struggle with friendship), I ordered Anita’s book that very day. It arrived last week and has sat patiently on my desk awaiting the weekend and a few precious “free” hours.

I admit that initially I was a little daunted. I work hard, my home life continues to be quite intense demand significant emotional energy and I try to find time for creative pursuits that replenish me. So any additional moments are precious opportunities for rest and “escape”. Reading a non-fiction book that sits squarely in my world of work felt a little more like “homework” than “pleasure”.

Oh my goodness was I wrong!

Love, compassion, understanding and an uncompromising belief in autistic people’s desire and ability to make connection leaps our of every page.

I cried the bittersweet tears of recognition, nostalgia, hope and sadness while reading each chapter. I longed for time travel and the opportunity to offer such a chance to my children, while looking forward with excitement to acting on this newfound knowledge with my grandchildren.

Anita describes a simple (not easy) and effective approach to one of the biggest and seemingly intractable problems seen in schools: increasing numbers of children display social interaction difficulties and soaring anxiety.

We talk and talk of the epidemic of mental ill health in youngsters. We stress the need for emotional regulation, a “relational” approach to children and the importance of emotional wellbeing.

But we prioritise rules, uniformity, physical attendance, homework, grades, obedience…. all within an urgent need to adhere to a clear timeline.

Anita demonstrates how much can be achieved by protecting a couple of hours each week and affording children a one hour session in which time can pass at their pace within a clear structure. Freedom within boundaries…

It’s hard to see how any school could find this unmanageable.

There is so much learning in this book for me – both as a parent and as an advocate and consultant. For any parent, grandparent, family member of an autistic child (or adult. For EVERY teacher, practitioner, SEND officer!

I truly believe that Anita’s book should be compulsory reading for anyone working with autistic children. If only one of the gems in it were applied by each adult our children encounter, their lives would already improve.

I am left with so many questions! So many of the families I work with would benefit hugely from the Friendly Group, and Anita’s book gives a wonderful starting point for someone wanting to start their own. Maybe you, dear reader, have already done just that? What is your experience? Have you seen a similar approach to support older young people or indeed adults?

My journey does not end here. “Making Friends” made my Saturday more beautiful, but that is only the beginning. I look forward to finding out more, to seeking out “Friendly Groups” near and far and learning even more… and I urge you to join me on this journey!

Find Anita’s book here!

Uncategorized

Jargon… is it only for professionals?

Benedicte

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?

Masking

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.

Caring, parenting, Preparing for Adulthood

Just like the seasons, everything changes

Benedicte

I love autumn because it’s the one season in which we can see things come to life at the same time as things dying. Autumn is the season of mushrooms and aren’t they just the most magical things? It’s also the seasons when many plants give a last flourish of colour before letting us know that they’ve had enough for a while.

Everything changes. All the time. From bad to better, from good to awful sometimes. From the known to the unrecognisable. It’s a simple sentence that has stood me in very good stead as I’ve journeyed through the complicated world of additional needs.

If you are in the depths of despair because your child is ill, or school just can’t see how to help, or a social worker thinks you are causing your teenager’s problems. Things change. They do not stay the same, so the pain you are feeling now will not endure. [It is possible they may get worse for a while, but the change in itself is usually helpful.] In reality, things do get better if only because as human beings we find ways to normalise our lives. It just makes things easier to manage.

A very good friend, Yvonne Newbold talks in her book about managing “ten-minute chunks”. We can all endure for ten minutes, so set your sights and your clock for the next ten minutes. Then breathe and see where you are.

I’m constantly amazed by how much better things can get if we just give them time. In terms of our children, it’s all too easy to be told that children with additional needs tend to need longer to mature, to develop. When your teenager is self-harming or running wild with people who frighten you, those additional years feel far away and unattainable. And yet… time and again those of us with slightly older young people will tell you that change of a kind they never imagined happened.

If the bad can change to good, there’s no shying away from the fact that good can change to bad too! All those interventions you put in place to support your autistic child, that were working so well, suddenly seem to be having no effect. Or sometimes, they are just making things worse! What happened?

What happened is that your child is growing. They are changing and as a result the interventions are not working anymore. Because your child is a wonderful, complicated human, not a robot!!

The same is true for children with physical needs. The physiotherapy programme implemented two months ago may now be causing pain, or be less effective because they’ve had a growth spurt. Which can be really frustrating if you’re not due to see the therapist for a few months! Don’t hesitate in such circumstances to make a phone call or send an email for earlier input.

Sometimes positive change is the scariest…

What if your child stops needing the support that has been critical to their wellbeing and progress?

What if that support has been so effective that your child no longer has the same level of need?

Is that a sign that it’s the right support and is allowing them to progress and thrive? Or has it outlived its usefulness?

Our systems in the UK make it very difficult to access specialist support, and all too easy to lose it. Unfortunately, that means that we parents are terrified to reduce provision that has been hard-fought and has made a positive difference. Even if it’s the right decision.

One of the hardest things to do as a parent carer is to recognise the time to let go. The time to take a risk, a chance, to trust our child and the people who are helping them. Even if a therapist you trust tells you that they no longer need to see that child, every cell in your body may well scream in protest. Personally, I believe that if support were easier to put in place, we parents would not fear this part of the process nearly so much….

It is a risk, to take away some of the scaffolding. In the same way as removing a plaster cast and crutches may result in a fall, removing assistance, or a therapy session may well result in some difficulties. But let’s stick with the broken leg analogy, because it’s easier to understand.

Having a leg in plaster allows broken bones to knit together and mend BUT… that same supportive plaster cast results in muscle wastage. When the plaster comes off, mobility is affected. Your leg will no doubt hurt, as will your hip and your back. Your arms probably hurt because of the crutches you had to use. In many ways, your whole body has been badly affected by the treatment used to deal with the crisis that was your broken bone.

Proper recovery to independence depends on your work. Your willingness to push through the pain, to walk in spite of the wobble. You may need to use crutches a little longer, then graduate to a single stick until finally you walk alone, if slowly. But if you do the work, if you are brave enough to move with the discomfort, you will learn to walk again.

I’m a parent carer. I often fall into the trap of supporting for too long, or too much. Because I love my children and I have seen them struggle and suffer far more than their peers. I often have to remind myself that my goal is for them to live as independently as they can. And that depends on my ability to step away from them, to give them the space of moving with discomfort.

Going Backwards never really works

I’ll leave you with a little thought. One of the fears in considering the reduction of support is that you will have to fight to get it back.

I would suggest that you will never need or want the precise support that you are reducing, because your child is not the child they were a year ago, two years ago. You may well have to advocate for additional support if things don’t go to plan. But it won’t be going backwards. You will be asking for something new, that suits your child’s needs now.

So in reality, you’re not losing anything. Try and be brave. Try and consider that those professionals working with your child have seen progress that suggests a plaster cast can be removed. Maybe it will be replaced with a splint. Maybe the leg will be left bare, and a few days later you will explain to the doctors that something more is needed (a splint, different painkillers). It’s even possible that another plaster cast will be required, but if it is, it will be a different shape, because the leg is not the shape it was when the first one was applied.

Advocacy and disability are not static. We often enter this world as we would start a sprint. Get your head down, run hard, do the work and get to the finish line. But the reality is that parenting a child with additional needs is closer to a marathon and closer still to an endless hike. So we need to learn to be flexible so that we can adapt to ever changing circumstances, and relax into what is a challenging but rewarding life.

Anxiety, Back to School, parenting, Preparing for Adulthood

Risk: finding the balance between benefit and harm

Benedicte

The Oxford Learner’s Dictionary defines risk in this way:

  • the possibility of something bad happening at some time in the future
  • a situation that could be dangerous or have a bad result

As parents of children with additional needs, we live with “risk” all the time. Bad things happen to us and our children rather more frequently than they do in more average families for a number of reasons including:

  • Our children may have medical conditions that cause pain, loss of function, or require treatments that have side effects and can be traumatic.
  • Our interactions with the systems in place to help us often do not go the way we hope, and that can have devastating implications for our children.
  • Some of our children have a different experience of the world and can put themselves or others at risk of danger or harm.

So in today’s world, parent carers can be or appear to be risk-averse. Which is seen as a bad thing. Risk is important for growth, we are told. Don’t be over-protective, over-anxious…

Parent carers are also, regularly, told that they are not being careful enough, that there may be “safeguarding” issues, that such and such a situation is not safe. Don’t be neglectful, don’t risk your child’s safety…

Hang on, back up a moment…. How many of you have noticed the dreadful contradiction?

It’s a legitimate question. I’ve spent the last twenty years living with these messages and simply accepting the fact that I might well be both over-protective and in some way neglectful of my children. Many of us do. But if we are able to take a breath, pause and reflect, we will quickly understand that there is something quite wrong here.

Overprotective parents show guarding behavior that is excessive considering the child’s developmental stage and the actual risk level in their environment.
https://www.parentingforbrain.com/overprotective-parents/

Uninvolved [or neglectful] parenting is a parenting style characterized by low responsiveness and low demandingness.
https://www.parentingforbrain.com/uninvolved-parenting/

The missing link for me in this conversation is the circumstances of a family. If your child has additional needs, your parenting is likely to be extreme, because your child’s needs are not straightforward, because you now have to develop “carer” relationships with outside agencies as well as “parent” relationships with your wider family. You have to juggle emotions, physical realities and systems that most families never encounter.

And yet, everyone around you will try to simplify your parenting to fit those simpler families. Even the best professionals find it difficult to fully understand the complexities you are dealing with every single day.

If you are a professional…

Take the time to get to know the family, or to understand the immediate situation. Let me give you an example:

Miss B is a reception teacher. She has created a fun, nurturing classroom and is passionate about inclusion. She loves all the children in her class and has a particular fondness for those who are a little different. When the children are in class without their parents, all seems fine. Some children may be quieter, but she is providing a tolerant and inclusive space that allows different forms of expression.
J’s mother is frequently very distressed when bringing him into school. She talks about J not feeling safe, she does not agree that he is “fine” in school because he is very sad, upset or angry after school.
Both Miss B and J’s mother have his best interests at heart. But Miss B sees J’s mother as over-protective because her classroom is a safe space and J does not have any behaviour issues at school and gets on with his work. In her eyes, school does not pose any risk.
J’s mother’s day is far, far longer than Miss B realises. J did not sleep, again, because he was so scared to go to school. He may have been unable to eat because his tummy hurts so much. He may have run away into the road on the way to school. When he comes home, he may be hurting himself or his siblings as his anxiety turns to anger and lashing out in the safe space of home. J’s mother has noticed over time that J is much calmer during holidays, but his anxiety escalates in the days leading up to school. In her eyes, school is a highly risky environment.

This post isn’t so much about finding solutions. Today, just try and notice the different perspectives of those you are trying to help. Try and understand that risk is to some extent about perception, and if a parent carer feels that a situation is risky, then it must be considered this way to make progress.

If you are a parent…

I know that you are aware of risk. You live with it all day, every day, and you are doing an AMAZING job. Because the overwhelming majority of you are absolutely not over-protective. Your are protecting your child, because that is your role as a parent.

That said, I’d like to give you a little something to ponder, to think about in the rare moments that you have time to allow your brain to pause and consider the future (even if the future is only tomorrow, or next weekend).

Risk is also opportunity. Risk is the gateway to growth. And risk does not have to be taken alone.

School may well feel incredibly risky to your little one. And it’s important to acknowledge that, understand why and do your best to reduce whatever is making them feel unsafe. At the same time, you know that Miss B is a good teacher who cares. So how can you lead your child into a situation that you know to be safe, but they feel to be dangerous? Can you lead them into risk so as to make it accessible?

A number of years ago, my youngest was due to go on a school trip for a few days. His medical conditions were complex but the key issue for me was that he was tube fed. He needed regularly tube feeding, and he was fed by pump overnight. I raised the following risks with school:

1. He tended to get tangled up in tubing during the night, sometimes around his neck. I managed that risk as best I could at home, but if he was going away with school, they needed to be aware of potentially fatal risks – how would they manage it?
2. If his “button” (feeding tube) came out, he needed to be within 20 minutes of a hospital. The holiday centre was not, and I realised that the only option in this scenario was a medical helicopter…. quite the thing!!

My son was very anxious about the trip for these reasons but I felt it important that he have the same opportunities as the others (putting my own anxiety aside!!). The next few months became a long effort to help him take risk “safely” and to help school understand that the risk was real and needed serious management.

My solution was to offer my time. I was willing and able to join the group to manage these risks. Sadly, this was initially seen as “overprotective parenting”, but when no other option was put forward, my solution was the one we all agreed to.

It’s important to note. I didn’t join any of the day excursions. I was simply on call in case his button fell out, and I had responsibility for him overnight. Did it go perfectly? No. Were there problems? Yes – but they were small and I allowed school staff to take those risks, make mistakes because life is messy. The important thing is that his life was not at risk.

And then they start growing up…

Every teenager and young adult takes risks. Stupid risks. They make bad decisions and there are consequences – sometimes very serious ones. It’s an important and necessary part of growing up and I think that often it’s a step we or our children try to bypass.

Despite disability, our children will never be able to move into adulthood if they have not had a period of adolescence, of which risk-taking is a crucial part.

Our job as parents is to find the balance. What is the risk they are taking? How can we support them to understand the possible consequences? What responsibility can they have for themselves and what part do we have to retain?

These are incredibly difficult questions and for some young people, there will need to be discussions about their mental capacity to take risk and make decisions. But for the majority, we dance to a much more subtle tune that is fraught with fear for our young people. My experience is that teenagers respond incredibly well to trust and gentle “backseat” support. They want to lead their own lives. To some extent, our job is to allow them to do that and be prepared to help them pick up the pieces if things go wrong.

I’d love to hear your experiences, thoughts, hopes and fears about risk when it comes to children and young adults with additional needs… Comment below!

Caring, parenting

Parent? Carer? Who’s having an identity crisis?

Benedicte

A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid. 
NHS England

That sounds easy, doesn’t it? If your partner or parent becomes ill and you need to help them, you are a carer. Even in those circumstances, it takes an average of 2 years for someone to realise and accept their new role.
Now imagine that the person requiring care is your child… maybe a baby? How do you disentangle caring responsibilities from parenting responsibilities? After all, no baby can cope without support!

Very few parents of disabled children view themselves primarily as carers. They are simply parents. The fact that parenting in these circumstances bears little resemblance to the experience of others feels irrelevant. We love our children and we will look after them according to their needs.
So why is it sometimes important to differentiate between “parent” and “carer”?
And how can you do it?

Disability in children presents in an infinite variety of ways. This blog is by necessity very general, so you may not recognise your circumstances in what I write. In the blog, I’m trying to be as broad as I can, which can mean that I’m referring to less complex cases. Each family will have a set of unique issues that need considering on their own merits, but hopefully this will give you some points to think about…

The Early Years…

Differentiating parenting from caring is much more straightforward with a very young child than later on. The primary needs of feeding, changing, sleeping are largely universal even if your baby or toddler is struggling more than most. You will be spending your time nurturing, reassuring and showering this little bundle with love, all of which sits quite easily under the “parenting” heading.

If your little one has medical issues, the “caring” responsibilities are quite clear. You may have to learn how to tube feed, how to change dressings, how to clear an airway. All clearly tasks that are considerably different to “parenting”. In this scenario, you will also be surrounded by a medical team. There is no doubt that this kind of parenting is extreme and you will also find yourself advocating for your child as you learn more than you ever anticipated in order to keep them safe. For any of you in this situation, I highly recommend The First Breath by Olivia Gordon, who gives a beautiful account of the intertwining relationship between parenting and caring.

For others, you will find yourself parenting in a way you hadn’t considered, but feels reasonably easy because you are responding to your child’s needs. They may not like being around people, they may shy away from certain sounds, clothes… and you just adjust, because you are parenting.

The world has yet to encroach on the family you are building. Demands are fairly low and you are able to enjoy being a parent… albeit you may have noticed some differences between your family and those around you.

Tests and checks and expectations…

As time goes by, systems begin to encroach. Health visitors, quite rightly, will want to see children reaching certain milestones in the “right” order, at the “right” time. In other circumstances, you will have notices things that don’t feel “right” and you may already be fighting to be heard.

And now you have to develop two identities:
Parent: nurturing, observant, anxious when things aren’t right, seeking answers and help.
Carer: objective, clinical, evidence-based, advocate. Because without these qualities, your voice may well go unheard.

There is huge overlap between these two roles, as well there should be. But many of us soon discover that our role as parent is very quickly dismissed. There may well be much talk of “you know your child best”, but when you sense a serious problem chances are that you will be branded an “over-anxious parent”.

As time goes on, more people enter your life and more checks, tests and expectations appear. Some of these will be truly welcome, especially if you have been begging for acknowledgement and help. Some will blindside you. Some will feel intrusive and unwanted. You may find yourself wishing you could stay in your family bubble, where everyone felt safe and accepted as they are.

You as a Carer

One of the most important roles you will develop as a carer is that of Advocate. You will be your child’s voice, you will be there to ensure everyone knows when their needs change, or are not being met. With that comes the role of Protector. Many of our children need to be protected from the onslaught of professionals, tests, systems so that they can simply be children. Finding the balance between the necessary appointments and those that could be handled differently will be one of your superpowers.

You will become and Administrator. Reams of paper will appear through your doorstep, emails will fly through the ether to your inbox. If I can offer one piece of advice here, it is to find a way to file all these pieces of information in a way that works for you. Evidence is going to be a word that you will simultaneously love and hate, and each letter is a piece of evidence…

In my more organised days, the following system worked very well indeed. I had one for each child. Each month had a separate folder or part of a file, with a sheet of paper at its front. Whenever a letter appeared, I would note the date, professional and summary on that sheet of paper. I then filed each letter chronologically.

You will learn more about your child’s condition than most professionals will know. This makes you an Expert Parent and you will gain strength and confidence from that label if you can truly believe it. Click on the link to find information about training events that can help you.

Maybe the most fundamental attribute that you will develop as a Carer is the ability to Challenge the Systems.

You as a Parent

Parenting is a complicated business, and there are many different “styles” of parenting. But at its heart, parenting is about supporting your child to become an independent adult. It’s a LONG process, that changes depending on your circumstances, your child’s age and needs, the society you live in and even your local community.

Add in disability, and you must also add in a host of observers to your parenting. Healthcare professionals, social workers, school staff, charity workers will all be part of your life and, whether you like it or not, they will also affect your parenting.

All too easily, your “parent” self may well become smaller and smaller.

With a little bit of hindsight now my children are on the cusp of adulthood, I think the one ingredient to look out for it: FUN!

Going out was always really difficult with my three… so we tried (too rarely) to have fun at home. One of my favourite go-tos was the bathtub.
Food colouring when I was out of bath bombs – or we made our own!
Picnics in the bath. Yes. We got favourite messy foods and just ate in the bath. Food fights and generally making a mess was good for everyone.
My children LOVED playing with cornflour and toys like cars. The bath was a wonderful place to make more mess.
Potion making is probably the best. Gather cheap bubble baths, ends of soap bars and old bottles (or better still ask friends who use hotels to collect any small bottles), and make potions!

If you have stopped having fun, it may be time to have a look and see where your parent self is hiding. It may be time to put your carer self in the passenger seat, if only for an hour or so.

Parent carers are never alone…

One of the most challenging things about being a parent and a carer is that you will be faced with many contradictory messages. And you may well find yourself unable to make decisions alone. What is a simple parenting decision for many becomes a minefield of caring and safeguarding questions where the opinion of several official departments will play a part in your decision.

For example, many people will tell you that part of parenting involves teaching your children to do new things – some of which may well be risky!
Parts of the SEND system will be suggesting that you are being too protective and slowing your child’s independence – but other parts of the system may well be concerned that you are putting your child “at risk” and talking about safeguarding issues.

The reality is that parenting and caring for a child with additional needs are always intertwined, and that many of us are caught in a fishbowl that tremendously limits our options. It can be really helpful to stop and remember that. Remember that as a carer, your parenting choices and independence may be limited through no fault of your own. And don’t hesitate to remind those around you of that reality…

And You as… You???

A big topic for another day. When the evening comes and you are reaching the end of the day’s parenting, maybe a lull before a night of caring, ask yourself: did you give any time today for “you”?

In the midst of caring for complex little people (often more than one), we simply lose ourselves. I’d like you to share a moment, a thought, for the unique and wonderful person that is you. She or he may be in hiding at the moment, or hibernating while you concentrate on keeping your children alive. But she or he is still there somewhere, waiting to emerge once again. I wonder who she is, what he likes? I wonder how you are changing in response to this strange world you inhabit as a parent carer?

Anxiety, Back to School

School Avoidance Awareness Week

Benedicte

I’m so pleased to share links to a wonderful organisation, Sunshine Support, and their recent initiative to highlight a growing problem in the world of additional needs: children who cannot attend school.

I love Sunshine Support’s approach, which is very similar to the work I do with Tugboat, if more established. Do have a look at the webinars they offer!

I chose to speak on this subject at the end of this awareness week deliberately – because the problems faced by children and families will not disappear next week or the one afterwards. It’s really important that we continue to tackle these issues even when the spotlight is not on them.

To change things up a little, I thought I would have a spontaneous chat with you on the subject:

Back to School, self-care, Therapy

When feelings, thoughts and reality collide

Benedicte

A few years ago on a Friday afternoon, I received an email telling me that my child would not be going to the school that I had pinned all my hopes on.

[PSA: I am talking about school choices for children with additional needs and disabilities for whom choices are remarkably limited.]


The air was sucked out of my lungs. The ground fell away from me. Suddenly my vision narrowed to a pinprick in front of me. I couldn’t feel anything and at the same time my skin was alive with painful touch. The textbook description of a panic attack, I felt not only as if I were dying, but as if my child, husband, other children and extended family were dying.
Literally. By which I mean everything in my body was telling me that we had reached the end of life.

Many of you will read this and scoff, thinking what an overreaction I was having. The kinder among you will pity me and the extreme anxiety I was feeling – I must have an underlying anxiety disorder. Some will knowingly tut and explain that this is exactly why it’s important not to develop an “overprotective” parenting style.

The reason I bring this up today is that time has helped me see the bigger picture and I think it’s worth exploring, whether you are a professional supporting a family, a parent waiting for this kind of decision, or a parent in the midst of that gut-wrenching panic.

Feelings

I’ve described to you in my opening paragraph the sensations in my body on reading that email. My feelings were not actually even engaged at this point. My lizard brain was in complete control. It had assessed the situation and concluded that we were dying. Quite rightly, it had then engaged any and all survival mechanisms (possibly too many at a time!!), which importantly disengages the owl brain (Owl usually wants time to think, by which time the tiger has eaten you). There are loads of videos on YouTube and other platforms that talk about this, but here’s one to get you started.

Eventually, my heart rate settled a little, and all of those fight/flight symptoms reduced just enough for my Dog brain to get a look in and turn the sensations and input into emotions, feelings. Let’s take a look at what my Dog brain was telling me:

Devastation: I felt as though the world had caved in. All my hard work had been ignored, all the building blocks I’d so carefully put together had been swept aside. I was back to square one, much like Sisyphus.

Image by Camille Bissuel

Sadness and isolation: I didn’t have a plan B. Not because I desperately wanted plan A, but because plan A had been the only one I’d found – and nobody had suggested another plan. I felt terribly alone and just wanted to cry.

Frustration: I felt completely unheard – my flawless, calm and quiet logic had been ignored.

Anger: How dare the system, the people not listen to my clear, considered arguments? How dare they suggest something that ignored all the evidence I had presented and the risks that came with their ideas?

Despair: Where next? And this was really where I landed. There’s little progress to be made from despair because despair is the land where Hope goes to die….

From Despair, I reached out to a wonderful friend, knowing she would understand. She had been in my shoes and she would know what to do next. I will be forever grateful for her response which, at the time, filled me with a sense of shock and betrayal.

“It’s not the end of the world!”, she said, “Just because it isn’t the path you have chosen doesn’t mean that it will be the wrong one.”

She had the luxury of not sitting in the toxic hormonal soup of panic, or in the painful moment of emotion. She had experienced similar situations and had survived… and her Owl brain was alive and well and could see far further than my extremely limited vision.

This amazing friend is Yvonne Newbold of Newbold Hope, who helps thousands of families understand and support their children… Go visit!

Thoughts…

Eventually, panic subsides. It just does. We are not designed to live in a state of heightened panic and we find ways to normalise any situation that we sit in for a period of time. And when panic subsides, the emotions start to allow room for thinking.

My Owl brain loves this bit. It comes in, the conquering hero, almighty rescuer, knight on a white horse:

Image thanks toGerard Van der Leun

“I can fix this! No problem is too big for me! I will find the right name, email, person and I will correct this Gross Injustice!”

Of course, it then came to a screaming stop as it realised that nothing happens between a Friday afternoon and a Monday morning… As it happens, in this situation, I was able to find someone to speak to and eventually after much discussion, the local authority “conceded”. They agreed that my preferred school was the best option.

But. But. But. Before you allow your Dog brains free reign…

(The professionals among you will no doubt be feeling that here is another pushy parent who has got her way, where many parents don’t have the resources to push like that – how unfair!

The parents among you may be whooping, thoroughly vindicated in the knowledge that once again, the evil and stupid Local Authority has been shown its inadequacies!)

Reality

Because our SEND systems are truly bogged down, mired in bureaucracy, deadlines, poor resource and all manner of irksome nonsense, nobody had the time or knowledge to sit down with me and have a proper conversation.

We continued on the path that I had identified as most likely to help this young person. It was not a failure. Nor was it a success.

With the privilege and value of hindsight, I can now say with absolute certainty that the initial proposal would not have resulted in anybody’s death. I suspect it would have caused far more problems than the path we followed.

I am also quite sure that if we had worked together, we could have found a compromise.

I was left to figure out the Reality of my situation on my own. There was no advice to be had that could in any way be deemed impartial or indeed focussed on my child’s true best interests. Far too few people in this system have enough knowledge of the breadth of additional needs, or indeed the various educational settings or alternative pathways to advise those of us with complicated young people.

So we muddle our way through and find it increasingly difficult to lift ourselves out of our emotional muddle to be able to see the wood for the trees…

What next?

If you are a parent reading this, let me gently suggest a couple of things:

  1. Use all the strategies you know to calm your brain. You will make better decisions if your Owl brain is in charge.
  2. What is the worst thing that can happen? Not next year, not next month, but right now, and tomorrow? Facing the thing you fear most will likely rob it of its power over you and you will be better equipped for the next step.
  3. Talk to someone who can help you see the wood, the forest rather than the multitude of trees that are in your way. We all need help to see the big picture, and that allows us to make better decisions.

If you are a professional working with a family – closely or merely by email:

  1. Please avoid sending such emails at the end of the week. It’s true that we may have calmed down by Monday, but that will be at the expense of our physical and mental health. Give us the opportunity to call you and share the sense of panic.
  2. Be ready to offer reassurance in the form of continued conversation. Remain open. Have you really heard everything we are trying to let you know?
  3. Do your research. Do you truly understand my child’s needs? Do you truly know the provision available? Be prepared to offer alternatives, not because they are the only things you know of, but because you truly believe that they can work.

It can be very difficult, in the midst of a panic attack, to believe that life goes on. But it does! And our capacity to adapt never ceases to amaze me… everything passes and if you are feeling at your worst, I guarantee that you will feel better…