Caring, parenting, Preparing for Adulthood

Just like the seasons, everything changes

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.

Caring, parenting

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

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

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

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

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

The Early Years…

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

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

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

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

Tests and checks and expectations…

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

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

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

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

You as a Carer

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

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

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

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

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

You as a Parent

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

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

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

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

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

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

Parent carers are never alone…

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

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

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

And You as… You???

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

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