Author: Benedicte

Preparing for Adulthood

Will my child ever learn to manage money???

Benedicte

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!

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?

Preparing for Adulthood

From special school to…..?

Benedicte

In the SEND world, we can broadly find three categories of child/young person:

  1. Severely disabled children who will likely enter a specialist setting very early and are highly likely to require social care support throughout their lives.
  2. Children with additional needs who stay in mainstream school. They may well struggle, but they remain within their community, the “real world”.
  3. Children whose needs are such that they cannot cope in a mainstream school. They often enter specialist provision during primary school or more often in secondary school. They are often quite able, and the majority of these children will not qualify for support from adult social services.

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?

Uncategorized

How do you Holiday?

Benedicte

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

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

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

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

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

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

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

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

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

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

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

Uncategorized

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

Benedicte

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

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

What is an EHCP?

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

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

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

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

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

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

Benefits of an EHCP?

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

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

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

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

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

Disadvantages?

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

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

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

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

Conclusion

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

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

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

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

Preparing for Adulthood, Therapy

Adulthood and Physiotherapy

Benedicte
Image by OpenClipart-Vectors from Pixabay

As parents of children with additional needs, we learn language, systems, processes that become our norm. When a child has physical needs such as low muscle tone or hypermobility (and any number of other issues), we learn to manage physiotherapy appointments. These might happen at school, often delivered by a teaching assistant, or you might have hospital sessions, and then keep exercising at home. But what happens when your little boy or little girl turns 18?

Physiotherapy services in the adult world of the NHS are quite different and it can be a shock to the system to know that from one week to the next you may be discharged, with no real plan moving forward. So what to do?

Each family and each young person is different, but here are a few thoughts:

Get to know your GP – really well. Take the time to build a relationship with them, and encourage your young person to get to know them. This will take TIME and perseverance, especially if your youngling is anxious or struggles with communication. When they get called for a flu jab (if relevant), encourage them to make the call to book an appointment. It might help to give them a script, or practise the call. We’ll talk about this more another time.

The GP can make referrals to physiotherapy, usually in batches of 6 sessions. They can and do make repeat referrals, but there isn’t really a way to get the kind of therapy that you will be used to. This can be really difficult, because you won’t be able to build the kind of relationship that you may have had (or your child may have had) with a therapist or that one person who did the work with them every session.

So what are the other options?

  1. Private physiotherapists: an option for those who have the means and which will be ideal for some, but not necessary for many young adults.
  2. Personal trainer: you might choose to ask your current physiotherapist to write a report or even pay for a meeting between them to ensure your young person’s needs are understood.
  3. Sports: what sport would meet need? Think about how this option will help your young person connect with others and belong in their community. This could be through a club, or a gym membership.

Remember that your little boy or little girl is now a young adult and our job as parents is to help launch them safely into adult life. So take a step back and think about what needs the current physiotherapy is meeting – how much of it is habit, how much of it is essential healthcare, and how much is necessary physical maintenance?

Then consider what he or she could put in place in their life that would meet that need in a way that mirrors what their mainstream peers might be doing…

Good luck – and let me know how you’ve navigated this issue, or what your thoughts are!

PS. For those of you with very complex young people, you may be looking at long term support from the NHS, called “Continuing Health Care”. Should your child meet the criteria, physiotherapy might be included in their care package. It’s important to understand that criteria for CHC are extremely strict and only a very small minority of children who had EHCPs and high support in childhood will be eligible.

Uncategorized

Life and Hope…

Benedicte

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

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

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

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

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

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

Uncategorized

Welcome to Tugboat!

Benedicte

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

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

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

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