There is an invisible weight to caring. To all types of caring, although today I am thinking particularly about parents whose children need more care than others. Children whose lives might follow a different trajectory, who may never be independent in the way that society expects. This is the reality for thousands of parents in the UK. People who are parents by choice, and carers by necessity.

All parents care for their children, and most parents discover that parenting is something that looks easier from the outside than it feels from the inside. Who hasn’t tutted at the behaviour of a small child, only years later to regret that hurried judgment when faced with their own toddler’s meltdown or a teenager’s rage? Understanding often comes through experience. We can never fully know what it is like to stand in someone else’s shoes until we have been there, or at least somewhere close.

But for parents whose children need additional care, that gap in understanding can feel particularly wide. Being a carer for your own child is not always recognised or spoken about, which can leave people feeling isolated and alone. The stares and tuts of unknowing others do not necessarily vanish as your child gets older, sometimes they increase. Difference is too often met with judgement.

Unspoken Grief

For many parent-carers, there is grief. A grief that can seem shameful to admit, as if wishing that things could be easier for your child was the same as saying that you don’t love them as they are.

But these things are not mutually exclusive. You can love your child unconditionally, while grieving an anticipated future that is changed utterly. You can celebrate who they are while wishing that their life was not so difficult. There is room for a whole range of conflicting emotions, although finding space to express these can be difficult.

The Broken System

And then there is the broken system. As if the invisible weight of having a child that needs extra care wasn’t enough, the very systems that ought to provide support can become another burden.

You may be required to take parenting courses to access services. You may be asked questions that subtly call your parenting ability into doubt until you begin to doubt it yourself. Every step can feel like a battle. EHCPs, DLA, CAMHS, SEN schools, tribunals, LA transport – this is the language of the SEN parent. Too often, nothing seems to be given freely, and the cost is personal.

It is not necessarily that the professionals you meet along the way are uncaring. Many are doing their best, but they are often working in systems that are overstretched and under-resourced. Waiting lists can be years long, and promised support can look very different in the delivery, if it arrives at all.

Parents too often become a buffer between their child and the broken system. In trying to prevent the suffering of their child, they can exhaust themselves – advocating, fighting, phoning, emailing, chasing … and all too often finding doors slammed in their faces and barred from the inside.

Overwhelm

We all have only so much capacity. The effects of prolonged advocacy and caring can be both mental and physical. Sleepless nights, poor eating habits, aching joints, pain, sickness. The strain of carrying so much can make itself felt in the body.

Minds that have borne so much can begin to feel fractured. Things that once seemed manageable can become overwhelming. Organisation slips, things get forgotten, balls get dropped. It can feel like everything is falling apart.

In caring for another we can forget to care for ourselves. Even if we don’t forget, the space for self-care can be squeezed to almost nothingness. Caring for someone we love can make our own needs seem unimportant. Carers frequently put themselves bottom of the list.

Finding Space in Therapy

How can therapy help? This is something I have grappled with both as a therapist and as a client. Therapy cannot change the system. It cannot provide the practical support that is so often lacking or remove the responsibilities of caring.

But it can offer something different. A space that is about you. Somewhere you can put things down for a while and breathe. Somewhere there is room for grief as well as love, anger as well as gratitude, exhaustion as well as resilience. A place where for once you don't have to be the person holding everything together.

Because what I have found is that gratitude can exist alongside grief and allowing space to express that grief can create more space for gratitude. Acknowledging how difficult things are does not diminish the love you feel for your child. Accepting your child as different does not mean accepting that they are less. And living in a system that makes you feel like you are the problem does not mean you are the problem.

Sometimes we need somewhere to make sense of what we are carrying and what we have been through without having to justify it or minimise it. There can be room for you too. And sometimes finding that space can begin to change things, allowing hope to bloom.