Category: Back to School

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!

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…

Anxiety, Back to School

Impossible choices

Benedicte

Don’t let the photograph above fool you: sometimes, you will be facing the impossible.

No amount of positive thinking, go-getter attitude or wordplay (I’m possible…) will change the fact that you are faced with a situation in which you have no sensible choice.

In the world of disability, we are constantly urged to develop resilience, to find solutions, to reach out to “our” community for support. We are also members of the wider community, but strangely often only in terms of the demands placed upon us.

It’s September, which in the UK means that it’s time for children to go back to school. As parents, we have a legal responsibility to get our children to school. As parents of disabled children, that school is often far away, while another child has to be somewhere very different at the same time. I’m not even thinking of those families who have two or more children, all needing specialist provision, so in several distant schools.

The theory, the legislation is simple and supports families by offering transport to those children. The reality is more complicated: even where families are found to be eligible, getting appropriate transport in place at a time when fuel cost is exorbitant, when taxi drivers have found alternative employment and in a county with limited public transport is seemingly impossible for the local authority to arrange.

So families are sent letters inviting them to drive their children to school in return for an allowance – which seems a simple solution.

Putting aside complications of how that allowance is calculated, let’s focus on practicalities. If I have two children to take to two schools that are not close to one another, try as I might, I cannot bend the space time continuum. I will never be physically able to do it. If I work full time, if I am a single parent, if I or my partner are disabled or unable to drive… If I do not have a car, if I cannot afford the fuel because the allowance is too small, or arrives too late…

Transport is only one of many quandaries families face that leaves them with impossible choices. I’d like to share a story from my family that illustrates choices we face every day.

Nineteen years ago, almost to the day, my baby was rushed to hospital and quickly diagnosed with leukaemia. I had two toddlers under the age of 4 and a husband whose work commitments (and therefore our financial stability) were intense. The hospital did not allow other children to attend appointments, let alone visit a sibling in the bone marrow transplant ward.
My older child was in school, which at least meant that he was taken care of, but my younger one was too young. I was faced with an impossible choice. I had to take the baby to appointments – that was necessary, immovable, as were the hospital rules. But I had nobody to leave the 18 month old with…
When we live with impossible, we somehow find ways, but they have consequences. I knocked on doors – luckily we lived in a small village, but the reality is that I left my toddler with people I did not know, whose houses I had never been in. Weekly. For several months. Rarely did she spend the day in the same house.
Twenty years later, I’m increasingly convinced that this is one of the causes of long term trauma that she must now live with (or process, or, or, or…). Early trauma changes brain development… So my impossible choice caused (or contributed to) another child’s additional needs.

Was I wrong? I don’t believe so. I did what I had to do, the only thing I could think to do. And I’m forever grateful to those neighbours, those strangers for helping. Nevertheless, it was an impossible choice, with unbearable consequences.

If you are in this kind of situation…

Your feeling of panic and loss of control is appropriate – you are faced with something that you most likely cannot fix. You are right in your assessment.

Try to be still. Put a hand to your chest or your belly and notice your body. Are your fingers or toes fidgeting or clenching? Is your jaw in a vicelike grip? Are your shoulders trying to reach above your head?

You cannot change the situation, but you can change your physical response to it. Breathing exercises, mindful practices, meditation – call it what you will, but these activities will allow your brain to calm and move a small step away from blind panic.

Following that, I would suggest that you remember that your job as a parent is to keep you and your children alive. Feed them, keep them warm, keep them safe. For today, that is enough.

The next step in my experience is to ask for help… but today, I’m going to avoid that. Because what I’ve suggested so far is already an enormous challenge for anyone dealing with this kind of situation. Instead, I’m going to talk to others:

If you are not!

How many times have you seen a panicking parent in a supermarket, or a mother in tears at the school gate? How often do you notice a “naughty” child?

Are you a professional working in education, health, or social care? Have you been on the receiving end of an “angry” parent? Have you sent out a letter explaining that you cannot provide what you know you should?

I invite you to read this and truly understand that the family in front of you has no choice. I invite you to hear the desperation and the absolute determination to do the right thing for their children in their voice. I invite you to sit and think about the practical implications of what you are suggesting.

And then I invite you to offer truly practical suggestions. It may be that a school has to concede that a child will arrive late to school – how can you as a school leader make that manageable for the child, the family and indeed their classmates? It may be that you can support two families to get to know each other and create a support network.

What is the origin and purpose of the rules you are imposing? Are they truly necessary? What reasonable adjustments can you make to those rules to support that family? (And oh yes, I used that phrase very deliberately).

We are human beings, and as such, we are group animals. We need each other, we need community for exactly this situation. When one of us falters, it’s for the others to pick them up.

So today…

  • Look around you, notice the one faltering
  • Do not walk by, your eyes turned the other way
  • Do not offer platitudes, and trite phrases such as “what hurts you makes you stronger”
  • Stop.
  • Take time.
  • Listen.
  • Think of a way that you can help, and offer…

And every time you see a parent in crisis who has found the strength to feed her child, keep him warm and safe, notice that they are doing exactly what must be done and let them know what an amazing human they are.

Anxiety, Back to School

Back to school tips for anxious children

Benedicte

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!

  1. Take your own Anxiety Temperature. What can you do to reduce your own anxiety, because however legitimate, it’s contagious and your child will feel it.
  2. Hopefully you will know your child’s teacher. If it’s possible, arrange a meeting with them before term starts, or at the very beginning of term just before or just after the school day.
  3. New “stuff” often helps children – do they have a new bag, pencil case, pens? If you can’t afford it, have a rummage around your house, and you might be surprised what you find in drawers that will be new to your child. Charity shops are also a good place to hunt, as are “pound stores”. Or maybe you could do a swap with another family?
  4. Have a visual timetable on the fridge or the front door so that the day is a known entity.
  5. Use a little notebook and create a mood diary for your child to fill in morning, lunch and after school. You could use it to pass each other notes or drawings of encouragement too!
  6. Sometimes, a teddy needs to go to school too. Have a conversation with the teacher about facilitating this if needed.
  7. A very small teddy, toy or even pebble in a pocket can be a reassuring anchor back to home.
  8. Write a word on your child’s hand! Tell them what it means, and let them carry you with them all day long.
  9. If you wear perfume or aftershave, or have a typical shampoo, find a handkerchief and dab a little on so that your child can be reminded of your smell.
  10. What will you do at home when school is finished?

What tips do you have to help a child who is anxious to go to school?