Please Don’t Give Up…
A month ago, newspapers reported that a single mum allegedly made the heart-breaking decision to end the life of her 10 year old learning-disabled son. Afterwards, according to press reports, she “covered him in a duvet and lay his body down next to his toys in the master bedroom”, then left the house in the early hours to notify the police.
Several days later at the Old Bailey, Joel Smith, prosecuting, stated she had been “struggling to meet her son’s care needs for the last year as he became older, bigger and more difficult to care for”. “During Lockdown he was not able to attend school and the burden of care had fallen more heavily on the defendant, together with the assistance from her friend,” Smith said. The child’s behaviour had recently become “especially challenging”. “He was disabled and required 24 hour care, suffering from a litany of conditions.” Interviews with neighbours reported in several national newspapers described him as autistic, with a number of disabilities, unable to speak and “prone to sudden outbursts, kicking his arms and legs and throwing things about”.
Although I cannot comment beyond those basic details on what may have contributed to this dreadfully sad case, I can share with you the feeling of being overwhelmed and desperately needing help, which will ring true for so many parents of learning-disabled children during this present time, myself included.
I have heard and read comments from those who are religious, who assert that God doesn’t give us any more than we can handle; or that we have been chosen because we are blessed and/or strong. However well-intentioned, this type of remark is self-evidently untrue. If it were the case, why are there so many learning-disabled children in social care waiting to be adopted? I wasn’t chosen by some divine presence and I didn’t choose to be a carer. Don’t get me wrong: there are moments of absolute joy and pride when our children achieve far beyond our expectations and this is one of the things that sustains us during the difficult times. But being a carer is hard, bloody hard, and you are learning on the job: there are no manuals to help you care for your child. And it is sink or swim....you have to cope the best you can and, at the worst of times, it feels like you are in the water holding onto a life raft whilst your other hand holds onto your child. The majority of times we do manage to climb back onto that life raft because we are survivors and we have to keep going for the sake of our children, but what if...
...you have no support
Lockdown has been extremely difficult, that’s an understatement. The Disabled Children’s Partnership ran a survey, #LeftInLockdown, asking parents and carers of disabled children how they have been coping during Lockdown. The report is extremely sobering to read. What strikes me again and again is that carers feel abandoned and how important it is to have support either from your partner, close family, social care, CAMHS, school or even neighbours, even if it is just for a daily chat. For single parents, school was often their only chance to get some semblance of respite each day, and that stopped completely during Lockdown. Those caring and coping alone suffered the most, particularly if they could not call on family and friends or were unable to articulate clearly and loudly enough to other support agencies that they needed help.
You then have to rely on such agencies taking these cries for help seriously. Several years ago, I recall a single mother with an 18 year old learning-disabled daughter ending both their lives because they were being bullied and abused by local teenagers for well over a decade. Having reported this to the police on numerous occasions and no action being taken, the mother finally could cope no longer. With no support and no prospect of the bullying ever stopping, she tragically took both their lives. Let us not underestimate that the prospect of leaving your child to cope without you after you have died, in a seemingly non-caring, non-listening society, might lead you to take your child with you.
...you have no break or time to yourself and are sleep deprived
Looking after a child for 24 hours a day, seven days a week, is utterly exhausting. You are extremely sleep deprived, you become cranky and your mind starts to play tricks on you. Your child requires a high level of support and you find that you can’t even look after your own physical needs; bathing, washing, eating properly or even using the toilet become problematic. Relationships suffer. Whilst supervising your child you feel yourself starting to nod off and have to repeatedly bring yourself back into the present moment. Any noise or irritation from your child becomes more magnified and annoying. You lose your patience and get angry. Your child reacts to this and becomes more difficult and challenging as a result.
...your child cannot communicate his needs to tell you if he is distressed or in pain
Language and communication are things that we all take for granted, but up until the age of seven my son couldn’t speak. He would just point and “ugg” at things he wanted. He was communicating in his own way, but it is extremely stressful, lonely and – dare I say it – mind-numbing to look after a non-verbal child even for nine hours a day. Does he love me, or does he simply see me as the source of everything he needs, and nothing more? My friend’s child, a non-verbal teenager, indicates his needs through actions and some sign language, but if she doesn’t establish what he wants quickly enough, he will start self-harming in frustration. Imagine feeling responsible for his pain and being on high alert all the time with no one to take over. It has always been a battle to get any sort of speech and language support at the best of times, but in Lockdown even that stopped happening for most.
...you spend all your time fighting for what should be rightly yours
From education to specialist support, from medical aids to respite care, you are often fighting what feels like an unsympathetic system. The BBC One Panorama programme ‘Fighting for an education’ outlined just how difficult it is to get a specialised education plan (EHCP) from your local authority for your SEN/disabled child. Furthermore, in order to appeal any local authority decisions, you are expected to have skills almost at the level of a legal specialist in order to advocate for your child.
...Your child has sensory issues and autistic behaviours
My son is very proprioceptive and has tactile seeking behaviours, which means he does a lot of grabbing, tight hugging, bashing, knocking things, and shaking my arms repetitively for a significant period of time. This wears you down. As children get bigger, this behaviour becomes more painful, objects intended to help in a sensory manner unexpectedly get thrown instead, so you need your wits about you – and a protective screen on your TV!
...your child has challenging behaviours
Lockdown has greatly exacerbated challenging behaviours in the large number of learning-disabled children. This is the type of behaviour that schools often struggle with, even when they have the benefit of specialists to call upon, numerous staff to help out, many different resources to distract a child, and options such as taking them outside for a walk if needed. How can a single parent be expected to cope on their own, trapped in their house, with a demanding, volatile child who is bored, needs stimulation and doesn’t understand why he has to stay in the house with the same person for weeks on end?
...your child reaches puberty but is still cognitively and physically severely disabled
As a child grows, they get heavier and taller, and can become increasingly non-compliant. Hormones are at play, behaviour is unpredictable. Moving a child who needs to sit in a wheelchair is hard physical work. Dealing with a child’s toileting needs when they are a young adult can be soul-destroying; facilities in public toilets may not cater for these needs, and the only alternative is to lay your loved one on the floor to change them. In my case, catching and supporting a teenage boy to prevent him falling and being hurt when an epileptic seizure suddenly begins can be agonisingly painful and – sometimes – impossible. Watching your friends’ children growing up and achieving their grades with a bright future ahead and knowing that will never be the case for your child is heart-breaking.
...you are struggling with a child’s physical health needs
In my previous article ‘Trapped’, I mentioned how physically, mentally and emotionally exhausting it is to endlessly watch your child suffer with unpredictable, uncontrolled, epileptic seizures. You feel so helpless and would do anything to take away their pain. Sadly, four years ago a mum suffocated her three children who had a life-limiting, degenerative condition before trying to take her own life. The prosecution stated that “she was depressed and wanted to end their suffering, believing that the quality of her children’s life was more important than their longevity”. She could “see no hope for the future and could no longer cope with caring for her children”.
Attending endless appointments, convincing your child to have EEGs, ECGs, MRI Scans, blood tests, and much more invasive surgery never gets any easier for either the child or the parent to endure. You have an overwhelming responsibility of care and it is likely that these procedures will be an ongoing part of your child’s medical routine for the rest of their life.
...your physical health deteriorates
Your physical health starts to suffer, your body becomes tired, broken, exhausted. Without support and respite, you have no means of exercising effectively and you eventually lose the will to even try. Carers are the last people to look after themselves and visit the doctor; we are too busy. For most general practices, we are not even allowed to book our appointment in advance so that we can arrange respite care for our child. You are made to book an appointment on the day and often your only choice is to take your child with you and hope events don’t intervene to stop it happening (imagine trying to discuss your own health with your GP or have an examination when your child with uncontrollable epilepsy is present).
...your sense of self is lost, you have no life of your own
All those dreams you had for yourself and for your growing child are gone. With diagnosis the realisation hits you, often gradually, that you and your child will never achieve those dreams. For me, the realisation happened slowly. It crept up on me, and I had time to adjust, though it does not make it any easier. For others it hits like running into a brick wall and you are completely crushed. Your career and any personal aspirations for your future are gone: you have become a full time carer now. Society doesn’t recognise or celebrate this new role as important, and the government’s Carers Allowance is a pittance if you calculated it as an hourly rate. Clapping for carers doesn’t include you - you are forgotten and made to feel worthless.
...your mental health suffers
No practical support, no respite, no sleep, poor physical health and the constant battle to get what your child needs in order to achieve their full potential ultimately leads, for many, to deteriorating mental health. When I represented Carers on my local patient participation group for my GP’s surgery, I discovered that doctors were unable at each appointment to engage in supplemental chat about how you are coping in your caring role, because they only realistically have 10 minutes per patient and are there to deal with your physical condition. If you do make an appointment to talk about your mental health, GPs are more likely to prescribe long term medication when really what is needed is a swift referral to mental health services for counselling and practical help from social care; although medication can help, it is often only a sticking plaster to hide the problem. Currently adult mental health services are understaffed and underfunded and CAMHS is difficult to access. Both have an extraordinarily long waiting list.
...you are alone, you have no one to turn to in order to voice your inner fears
So you turn inwards to the voices inside your head, your inner voice. You start to lose your ability to reason clearly. You blame yourself for your inability to cope. You feel helpless and useless and see yourself as having failed your child. You ask yourself: why is my child so disabled and why is no one able or willing to help him or me? Why is he behaving in this manner, is he in mental anguish or physical pain, is he suffering? Have I caused this? Why can’t I help him? I can’t continue like this anymore, none of this will ever change, what future is there for him or me? Solitude and night-time will make all these thoughts much more distorted and intense...
.....and then you are back in the water with your child, clinging to that life raft, you are feeling tired now, exhausted, the water is cold, so cold, your child is struggling against you, you just want to let go… it would be so easy to...
What will it take for our society and, more importantly, our government to listen to what we are saying? As carers we are in crisis, we are on our knees, begging for help which is not forthcoming. Local authorities break the law to avoid having to provide services they cannot afford. Our social care system is broken and seriously underfunded, our mental health system is understaffed, the NHS barely limps on and the government takes no responsibility for any of this. As carers it is so easy to feel overwhelmed by the enormity of our task, and it is agonising to watch our children struggle with their own physical and learning disabilities and feel they have no future. Under these circumstances it would be so easy to let go of that life raft.
Please don’t give up. For those of you who feel they are at their very lowest, recognise at what stage you are in this process and seek help now. You are valued and doing an amazing job under unbelievably difficult circumstances. Be vocal and reach out for help, use national and local charities, parent/carer forums, Facebook groups, Twitter and tell us you need help now. You aren’t alone and we will support you.
Below you can find a range of charities, several who currently have free 24 hour confidential helplines which you can use. This is for any carer, whether of learning-disabled, those caring for elderly loved ones, carers helping those with addiction, young carers and so on.
To those of you who are starting on this pathway with your disabled and/or special educational needs child, you will need a support network around you. Contact the relevant websites for advice, join parent groups/forums, talk to Citizen’s Advice about benefits you may be able to access such as Carer’s Allowance, contact social care, and liaise closely with the NHS. Help is out there, don’t do this all on your own.
24 hour listening support
- call free on 116 123 or visit Samaritans website
Shout - (offers confidential 24/7 crisis text support for times when you need to speak to a trained person to give immediate assistance. Text “SHOUT” to 85258 or visit Shout Crisis Text Line
The Hub of Hope
website – has a postcode search that you can use to find local services. Visit their website at https://hubofhope.co.uk/
– you can contact its Learning Disability Helpline 0808 808 1111
– information and support, telephone helpline 0808 808 7777
– an information and signposting service. Call Infoline 0300 123 3393 or Text 86453
Disabled Children’s Partnership
#LeftInLockdown - Parent carers’ experiences of Lockdown - https://disabledchildrenspartnership.org.uk/wp-content/uploads/2020/06/LeftInLockdown-Parent-carers’-experiences-of-lockdown-June-2020.pdf
BBC One - Panorama - Fighting for an Education. Mon 7th Sept 2020. Available on BBC One IPlayer.