Every night, Nicky Williams lies awake fraught with stress and anxiety as to what the future holds. Nicky, from Watford, is a single parent and full-time carer to her six-year-old son Jenson who has severe Autism, learning disabilities and Hypermobility.
Jenson struggles to make sense of the world around him and to this day Nicky is yet to hear her son say the word ‘mummy.’ Her every waking thought is for her son – what’s best for him, what does he need, what mood will he be in, will he eat the piece of toast I’ve cut precisely into 12 exact slices? Jenson will only eat certain foods, forcing Nicky to make an hour-long round trip to buy a very specific type of Cottage pie – but she does it for Jenson.
Her life is so different from what it used to be. In six years, Nicky has been out with friends in the evening just a handful of times! She previously owned her own cleaning business but was forced to wind it down so she could care for her son. She also enjoyed a very successful career as an advertising sales rep for a newspaper.
Money is tight – Nicky works as much as she can, but she is regularly called to school which means any job with rigid hours is just out of the question. She receives £60 a week carers allowance – that’s the equivalent of about 35p an hour.
“Friendships have dwindled, It’s tough to watch as your friends’ children are heading out to play football – your son should be joining them but he hasn’t even said his first word yet. You feel like you’re grieving for the child you thought you would have.
“Frustratingly, I have had people ask me why I think I should receive money to look after my own son – but life is so different for us. I’m on call 24/7 – Jenson doesn’t sleep well so I am up with him between eight and 12 times a night. Some nights I sleep for just 45 minutes. He’s still in nappies and they cost £200 every month.”
Nicky’s devotion to her son and his wellbeing means that her health and her wellbeing is suffering. She has a degenerative condition affecting her spine which has already seen her have three discs removed from her lower back. She also suffers from Endometriosis has been advised to have a hysterectomy – a major operation that is totally out of the question because of the impact it would have on Jenson.
“I had surgery last year, the impact it had on Jenson was unbearable – he couldn’t cope with my anxiety or his own and started to head butt walls, seriously hurting himself. I just couldn’t bear to see him so distressed, so I’d rather put up with the pain than put him through that again.”
Her condition has meant that Nicky has sought help from Newlife the Charity for Disabled Children, which was able to provide Jenson with a specialist buggy to make it easier for both of them to get out, without leaving Nicky in crippling pain.
“I think parents who are carers find it hard to talk, especially when they’re struggling – the sense of duty you have towards your child is overwhelming – you want to be able to cope but it isn’t easy. My biggest fear is what will happen to Jenson when I’m not here to protect him. Having the buggy from Newlife means we won’t be as isolated and I am working with Carers in Herts to get some support. I think it’s just important to talk.”
Help and Support
It can be really hard for carers to identify their own additional needs, without the time to step away from their caring responsibilities. It may be worthwhile reflecting on the shared experiences of other parent carers to identify if you have additional physical and mental health needs.
Who can help?
- Carers UK
- Waving not Drowning from Working Families
- Well Child
- Together for Short Lives
- National Network of Parent Carer Forums
Parent Carer Needs Assessment
A parent carer is someone over the age of 18 who provides care to a disabled child for whom they have parental responsibility. All parent carers are entitled to a ‘Parent Carer Needs Assessment’ by their local authority under the Children and Families Act 2014 amendment to the Children’s Act 1989. Parents can request a Parent Carers Needs Assessment directly from their local authority. The authority must initially assess whether a parent has needs for support and what those needs are and whether they can provide care for the disabled child, in light of any needs for support being identified. Additionally, the Parent Carers Needs Assessment must also consider:
- The wellbeing of the parent carer;
- The need to safeguard and promote the welfare of the child and any other children that they have parental responsibility for.
A non-parent carer is someone who provides care for a child but doesn’t have parental responsibility, such as a grandparent or another relative. Unfortunately non-parent carers don’t have the same rights to an assessment as parent carers, however, they can still request a carer’s assessment and will need to show they are providing or intending to provide regular and substantial care to a disabled child.
Find your local authority: https://www.gov.uk/find-local-council