Category: Preparing for Adulthood

Caring, parenting, Preparing for Adulthood

Just like the seasons, everything changes

Benedicte

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

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

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

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

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

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

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

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

Sometimes positive change is the scariest…

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

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

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

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

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

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

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

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

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

Going Backwards never really works

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

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

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

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

Anxiety, Back to School, parenting, Preparing for Adulthood

Risk: finding the balance between benefit and harm

Benedicte

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

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

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

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

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

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

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

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

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

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

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

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

If you are a professional…

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

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

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

If you are a parent…

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

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

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

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

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

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

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

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

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

And then they start growing up…

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

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

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

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

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

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!

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?

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.