I Am Trapped...

It has now been nine extremely stressful, exhausting weeks of isolation at home caring for my severely disabled son who, we are told by the NHS, is “at risk of severe illness should he catch Coronavirus”. Our son’s respite carers cannot help us as they are, quite rightly, staying at home with their families, and I respect that decision. So currently I am my son’s full time carer, which means I attend to all his medical, physical and psychological needs for nine hours during the day before his dad stops work and relieves me of some of the burden. The rest of the day is spent tidying a household left devastated by my son, dealing with the paperwork relating to his education, medical and care needs, cleaning, food ordering and preparation, all whilst juggling our son’s excessive demands. It is an extremely long, monotonous, stressful, tiring, anxiety-laden and emotionally draining day; and the days just keep coming. As parents, with only an hour to ourselves before bedtime, it is hard to relax and attend to our own physical and emotional needs. At a time when most people switch off for the day, we remain on duty throughout the night watching and waiting for the next seizure and my son’s inevitable 5.30am wake-up call. It will be no surprise to hear that we are also severely sleep-deprived.

Our 16 year old son has a rare genetic condition which means he has severe, uncontrollable epilepsy (both day and night), social communication difficulties, autistic traits, anxiety, sensory and proprioceptive issues, and challenging behaviour. Add in a large dose of extreme demand avoidance and you have a powder keg ready to explode at any moment. If we were able to get our son to relax by watching television, playing computer games, or surfing the internet, we would be delighted as it would afford us some respite. But no, he dictates what he does all day, ignores our suggestions, cannot sit still for more than ten minutes and demands our attention every moment of every day. He is exhausting and relentless.

Today has been a particularly stressful day as a tonic-clonic seizure is due. I can identify the signs: a significant increase in absence seizures where my son blanks out for ten seconds, sways on his feet and afterwards becomes confused. He also exhibits erratic emotional changes of mood, alternating between frustration and anger, interspersed with sporadic complex-partial seizures where he will howl, grimace and make odd mannerisms which leave him weak, fearful and distressed. This situation is made even more stressful by his refusal to do anything we suggest and his lack of understanding of safety, my most common mantra being “please move away from the top of the stairs”. Every time he stands up, I have to follow him around the house as his shadow, waiting for the inevitable tonic-clonic seizure; it will arrive, there is no doubt about this, it is just a matter of when. I am trapped....my mental health is suffering, I need a break.

Several hours later I get what I need – a break. Unfortunately it is at a cost; I am sitting in bed with my deeply sleeping post-ictal son. The seizure arrived, stiffening then violently shaking his body, arms flailing about, eyes wide and seemingly terrified, blood pooling out of his mouth from his badly bitten tongue. Five heart-breaking minutes later, using his emergency buccal midazolam I have put him into a medically induced sleep in order to stop the chaos of the seizure. After the brutal trauma of the event, there is an eerie quiet as I sit next to him and monitor his shallow breathing. This is always an emotive and reflective time for me and today it has given me chance to form my thoughts and write what I have been unable to articulate for the last nine weeks.

Firstly, I desperately want and need to send my son back to school for the sake of my own mental health. He fits the ‘vulnerable’ category, so would be permitted to go; but I can’t do it. I fear for my child’s health and also, in light of what has happened in the NHS and Care Homes, I respect the fact that a large majority of teachers in my son’s school mistrust the government and would prefer not to return. I doubt having a ‘clap for teachers Tuesday’ will sweeten the pill.

Is Social Distance possible?

How can you socially distance a child with special needs at school? My son, for example, has a one-to-one teaching assistant for his complex needs; he is also a ‘hugger’ with no concept of personal space. His proprioceptive needs mean that he is constantly holding, squeezing, and patting his teaching assistants, and stroking their hair. Personal hygiene is a mystery to him and he only grudgingly agrees to wash his hands when reminded and physically talked through the procedure. If he has a seizure at school, then a trained first aider would have to break social distancing rules to attend to him and administer his buccal midazolam. Other children at school will have similar and even more complicated medical needs that the teachers and teaching assistants need to attend to, ranging from removing saliva from a child’s face, to regular toileting routines for the incontinent, feeding difficulties, and even more specialist practices such as suctioning a tracheostomy tube. In my opinion, the government—in now seeking to reopen schools while Covid-19 is still far from under control—is asking far too much from our teaching staff, putting them, their own children, and their other family members at risk.

Currently there are still 15% of ‘vulnerable’ children attending my son’s special school. These are the children of key workers, ‘looked-after’ children, and children with challenging behaviour who simply cannot remain in their home for long periods of time without significant support. These parents have no choice but to send them to school, however frightened they might be of the health consequences. Having to care for their child 24 hours a day trapped inside their own home is impossible.

Carer's Resource

Why am I sharing this with you? Because the difference now is that my support system has been entirely taken away. I am alone. It makes me realise how ‘lucky’ I have been in the past with the support from my long-suffering and loyal family, the backing of a committed but underfunded social care service, and my respite carers, who are willing to work for little more than the minimum wage. Let me tell you that the majority of parent carers get nothing close to this level of support, and there are a million children in the U.K. with a disability. Parent carers are currently overwhelmed, in crisis, worn out, and anxious for their child’s future should anything happen to themselves during the pandemic. They rely on local charities such as the excellent Carer’s Resource, who operate within Bradford and North Yorkshire, providing care and advice to the most vulnerable. National charities such as Contact, Mencap, Scope, and the Council for Disabled Children, to name but a few, continue to support and inform us of the latest disability news during this ever changing pandemic. Other carers reach out to mental health charities and marriage guidance counsellors as their relationships suffer. It is also inevitable when you are providing such a high level of care each and every single day that your own physical health deteriorates; for oneself it is always, “I will contact the doctor tomorrow.”

Endlessly trapped

So, perhaps I should say, “We are trapped”, one of 6.2 million unseen carers, the majority of whom are currently ‘shielding’ the most vulnerable. They include the elderly spouse caring for their loved one with dementia, the parent dealing with their child’s addiction, and the young carer dealing with a parent’s chronic illness. And let us not forget that some carers have mental health conditions, caused or exacerbated by the worry and stress of the current pandemic.

Without these people propping up the NHS and social care system, these institutions would unravel, ground down by ten years of underfunding. The cost to the government and to you all would be astronomical. Whilst you are applauding the NHS workers, spare a thought for the hidden, forgotten carers who look after family members: they get no break or respite, they are trapped, overlooked, exhausted, overwhelmed. The difference is that our shift never ends.

The Carer’s Resource: carersresource.org – local, specialist carers’ centre
Contact: contact.org.uk – for families with disabled children
Mencap: mencap.org.uk – the voice of learning disability
Scope: scope.org.uk - equality for disabled people
Council for Disabled Children: councilfordisabledchildren.org.uk - a collective voice for the disabled children's sector