We all have off-days. Or off weeks, months, years! Here’s a reminder to do the basics to look after yourself.
But I also remind myself when I feel exhausted that children with additional needs often feel that way all the time… it’s a good reminder of how they experience life and how we can help them.
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.
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.
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.
The Oxford Learner’s Dictionary defines risk in this way:
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:
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.
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.
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.
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!
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…
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.
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.
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.
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.
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…
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?
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.
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.
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!
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:
“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!)
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…
If you are a parent reading this, let me gently suggest a couple of things:
If you are a professional working with a family – closely or merely by email:
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…
GPs, paediatricians, nurses, I’m talking to you. All of you who work with children and young people.
Whose doctor, nurse or therapist are you? Mine? or my child’s?
It sounds like a facetious question doesn’t it? But the reality is that through nearly twenty years of taking children to therapy sessions, medical appointments, hospital procedures and operations, it is one that I have struggled with from several different perspectives, and I have to admit that those doctors who have found the “right” balance have been few and far between.
He may only be able to nod hello. She might not be able to meet your eye. He may HATE you, simply because you are a doctor. But.
Say hello. Know their name (make sure your notes tell you that he likes Jim, not James). Use sign language if that’s the way she communicates. Consider having a picture of yourself with your name written on it… either a photo, or a cartoon version of you.
Remind them what your job is. If you are a cardiologist, you are there to make sure their heart is working as well as it can. If you’re an endocrinologist, good luck with finding an accessible description of your role 🙂
Explain why my child needs to be there… many children have endless appointments at which they simply do not understand their role.
Give them an opportunity to tell you something that matters to them… even if it is the latest Thomas the Tank Engine story!
At the end of the appointment, tell them what you learnt, how they helped you and what you are going to do next.
It can be so tempting to see my worry, my exhaustion and see a patient. But I’m not, and I need you to talk to me and figure out what kind of parent I am.
Know my name – if you’ve forgotten, ask me!
Some parents are going to need hand holding through their child’s care, and you will need to take many of the same steps as I suggest above for the child.
Many parents you meet in the world of SEND are experts. They have spent years learning about their child’s condition, how to support their child’s health, how to advocate for them in more settings than you can imagine. (A little secret from me to you: I’m one of those!).
There’s a good chance that I know more than you about his syndrome – you are the expert of his heart, I am the expert of the human.
I will have some very narrow, specific knowledge that can help you treat my child to the best of your vast ability. I also know how she responds to treatments, how she is eating, sleeping, how he is managing school and how fatigue manifests day to day.
I am a member of the medical team around my child. Please treat me as such. Explain things to me as much as I ask you to, even if you feel I don’t need that level of detail. If I ask you to perform a test, talk to me about why or why not.
To those doctors, nurses, therapists, health care assistants, dentists over the years who have SEEN my child, thank you.
To those of you who have seen me, taken the time to hear me and recognise my expertise, thank you.
I’ve chosen at times to wait two hours or more to see you rather than your registrars – thank you for giving me the opportunity to build a relationship that has meant more to me than you might know.
Doctors, therapists in particular. I have a request, a challenge if you will. Tomorrow, after you see a child in your clinic when you are writing or dictating your clinic letter, I would like you to stop, think and start again.
I would like you to write that clinic letter to the patient, the child.
Copy in the parents, the GP, other consultants, all those people that must be included in the public space that is a medical child’s life. But write to the child.
This means using language that is simple, clear, understandable. This means considering how to explain medical jargon, complicated ideas in a simple way. I know it’s not easy, but I promise you it will improve your practice.
Don’t be afraid of giving children complicated information. Medical kids are surprisingly knowledgeable and capable of understanding more than we think.
And yes, of course, most children won’t actually read your letter. Most parents will choose which letters are appropriate for their children to access. But your letter will be more accessible to us too!
If you are a doctor, a nurse, a therapist and you have taken this challenge up, please comment and let me know what happened.
When should we start thinking about our children’s independence? Their adulthood? Is there such a thing as “too early”?
Most children stagger through childhood and adolescence and bump their way to independence through a strange system of trial and error. Part of that is imposed by “society”: such rituals as learning to get to secondary school without their parents, or navigating the complexities of smart phones and the inevitable risks those bring.
I say that most children stagger because I’m not at all sure that we adults actually give this much thought. As parents, we often expect that our children will learn how to become adults by going to school – and after all, they are at school for the majority of their lives. Teachers often expect that parents will teach their children manners, how to budget, how to “do life”. The result is that many children just get on with it… for good or ill, and most of them do ok…
My children (and likely yours, if you are here) have additional needs, disabilities, that make “getting on with it” largely impossible. Some of them are blessed with a neurology that means they need to analyse the world around them before acting – this means they need data, information, to learn what is considered appropriate or safe. Others are dealt a tricky hand in that their bodies do not work very well – and our world consists of endless barriers to be overcome, which means interacting with people in ways that no “mainstream” peer would have to do.
So in answer to my first question, I strongly believe that you cannot start thinking about your child’s independence too early. And I’m quite convinced that EVERY child would benefit from adults around them that take to heart their responsibility to prepare that child for adult life.
Let’s take an example: managing money! It’s a huge topic, but I think it’s fair to say that most of us hope that our child will be able to handle their financial affairs independently.
I was never a very organised parent – pocket money was something that came and went, and that I was frankly completely flaky about. But we did talk about the cost of things fairly regularly. And if we went on an outing, I might give them £5 at the start of the day and talk them through the choices they might make. It was a conversation throughout the day. Child A might spend all the money within the first half hour, while Child B took their time to go to each shop, return, think, and eventually make a very considered choice. Child C, typically, would refuse to spend the money and instead choose to put it into their piggy bank…
So while we did not have a system, nor did we ignore money. We tried to make sure that money was not a source of stress at home, while helping them understand the link between employment and the bills being paid.
When the children were about ten years old, we made the decision to open bank accounts including debit cards. I was a little concerned because I had always felt that “real” money was easier to understand. Interestingly, ALL of them found the card easier when combined with a mobile banking app. The complexity of different coins was gone, and it became a simple matter of basic maths. And being able to check on their balance at any time meant that by the time each of them was 12, they could tell you immediately how much money they had. That was the time we introduced the idea that you cannot spend what you do not have, that we spoke about overdrafts and probably the time when we started talking about the fact that in life you can borrow money (with the general message that this is NOT A GOOD IDEA).
All of this was very gently, very slow and part of daily life. At no point did we sit down and have “money lessons”… but we did try to incorporate money management into daily living.
Fast forward a few years and I am now the proud parent of three young adults. One is living independently and has found ways to help her manage money in the complex world of rent, bills and limited income. She uses a budgeting app and is far more savvy about her money than I am!! The others have simpler needs but equally choose to spend the money that they have while being aware of what is coming in and what must go out.
To come back to the question of this post: will my child ever learn to manage money? Maybe yes, maybe no. But unless and until you give them the opportunity, neither of you will ever know. I really encourage you to find ways to allow your child to try – however young or old they are. There is a thrill and a joy to be found in earning a little money, or spending a little money and I challenge you not to delight in your child’s experience of this!
Let me know how you approach money with your child!
It’s a tough time for many children with additional needs and disabilities, the return to school! Many families I’ve met over the years have children for whom school is frightening, confusing and extremely stressful – not the safe place we thought it would be.
So what can you do? I’ve made a list here for you to think about, but I’m hoping that our lovely community will add to it, because parents of children with additional needs are endlessly resourceful. An idea that worked for you might help someone else, however strange it seems, so share it!
What tips do you have to help a child who is anxious to go to school?
In the SEND world, we can broadly find three categories of child/young person:
I’d like to talk about that third cohort today. As parents, we’ve often watched our children suffer terribly, gone to hell and back to get the systems to acknowledge their needs and finally reached a blissful stage where the “right” school has been agreed by the authorities. At last, our child is safe! In my experience, while we all want to see our children reach their potential, parents of this cohort are most concerned about their child’s wellbeing. Academic progress has often been left behind and it’s only once the right school is in place that we can start thinking about that again.
Our focus then tends to go towards the present and near future – how will we support our child to catch up the academic delay that their journey caused? Does the specialist school cater for their academic potential? Not to mention the work that goes into supporting their transition into this new world, annual reviews of progress, establishing relationships with a school that is often a long way from home, trying (often in vain) to build relationships with other families so that our children can develop friendships. Moving into specialist school is by no means the end of struggle.
What we forget about is the future. And by we, I mean parents, children, school staff, caseworkers, social workers. There is talk of preparation for adulthood, but in practical terms, this is very rarely part of the “now”.
The reality for these children is that their time in specialist provision is time limited. Most of them will leave the bubble at 18 – some earlier, some not until they turn 25, but once they leave, they will find themselves in the same world as the peers they left in mainstream school. And we do not prepare them for that.
I’d like to challenge professionals, practitioners here. You work with young people all the time and are able to take a longer view. How many of you know how Universal Credit works for disabled youngsters? How many of you know how to support a young person to apply for a supported internship? Do you know which local schools or colleges offer A levels for 18 year olds? Do you know how universities can support students with disabilities? Do you know how a disabled young adult can apply for support with housing, or whether they might qualify for some support to live independently? Do you know what health care they will be able to access?
If you are a social worker, do you know whether the young person in your care has the mental capacity to manage their own direct payments? Have you had enough conversations with them to understand their needs? Will you be able to signpost them to services if they do not qualify for adult support? Are you helping them to wean off support so that the transition is not so stark? Have you supported the parents to look for community support?
And parents. We have the hardest job I think. We have spent eighteen years protecting a vulnerable child, advocating for them, ensuring that their needs were acknowledged and that the provision to which they are entitled was in place. How is it that by accident of time (their 18th birthday), the goal posts have suddenly changed? We now need to learn a whole new language: Universal Credit, Work Capability Assessments, GP relationships, new educational language, new criteria for health care, social care, all while trying to “cut the cord” and allow our young person to grow! Not to mention the common problem that friendships in specialist schools are often fleeting – how will we help our children make friends that will accompany them into adult life?
It’s a really tough period, and none of us start early enough. Worse, those of us who try to be proactive find ourselves in a holding pattern because none of the systems are ready to plan the transition in anything other than a completely theoretical manner.
It’s very tempting to try and extend the “bubble” for as long as possible. After all, SEND legislation is clear that if a young person wants to and can access education (up to level 3, or A level), they can and should remain in education until the age of 25. Can I ask you one question?
Have you sat down with your son, daughter and asked them – do they want to continue in school? Are they aware of any other choices? Their answers may frighten you. But be brave… because that moment is coming, ready or not, and those of you who are brave earlier will have equipped your children with a toolkit that is often far stronger than any “mainstream” young adult’s.
If we have to move from a cliff to the valley below (which might be scary, but may well be beautiful), we can fall, or we can build a path, however rickety. What will your and your child’s path look like?
This is one of the words you will hear endlessly when you have a child with additional needs… But what does it mean? How do the different parts of the SEND systems use it, and how can you as a parent use it to help your child most?
And how can you challenge school to help meet your child’s out-of-school outcomes?
Tugboat SEND Navigation 