If you’re a parent caring for a child with a special education need or disability, it’s likely that you’re a parent carer. Many parent carers don’t feel like ‘carers’ because they are first and foremost parents, and therefore they may not think to ask for additional support. To unpick this issue, we spoke to Lorraine, our fantastic Parent Carer Support Practitioner, who knows – from first-hand experience – how important it is to get the right advice and guidance.
How would you define being a parent carer?
When you’re a parent carer, you’re not just a parent. You’re doing so much more, and the enormity of this role affects every aspect of family life –particularly when your child is younger. Navigating the basics of sleeping, eating, schooling, and visiting family is much harder when you’re parenting someone with additional needs. As well as this, there’s a lot of frustration. The frustration of being on endless waiting lists for appointments, waiting for two to three years to get a diagnosis and being unable to move onto the next step until this has been confirmed. There are a lot of extra considerations to take on board.
What do parent carers find most challenging?
Looking after themselves. Many people struggle to look after their own emotional health and wellbeing, but if they don’t, they can’t do their job. Being a parent carer can be isolating and lonely. As much as other people will empathise, unless you’re another parent carer, it’s hard to imagine the impact of caring for someone 24/7. Another huge barrier is knowing what’s out there. Once your child is diagnosed, it can take time to find the right support. You’re constantly fighting to give your child the best opportunity in life.
How has Covid-19 affected parent carers?
Over the past year, I’ve spoken to families facing severe financial hardship. In households where one adult is the primary carer and the other is bringing home a wage, redundancies have had a big impact. For the children themselves, their world has turned upside down and they don’t understand it anymore. One of the biggest struggles for families is being confined in the house. Sleep deprivation is a common challenge, and during Covid-19 parents aren’t able to access respite – they may even be homeschooling. When you have a child, who sees school as school and home as home, it adds extra pressure and stress for everyone. You also have to think about parents with children on the clinically vulnerable list, who are worried about sending them to school and the risk to their health.
What have you learnt about parent carers during your role
They do an amazing job. For all of the parent carers I speak to, even when they’re at rock bottom, with no money, nowhere to live, and having to squeeze into a 1-bed flat, they always put their kids first. They don’t think about themselves. Unfortunately, many also feel totally unrecognised and invisible to others – including health professionals and sometimes family members.
Why would you encourage people to register as parent carers?
Swindon Carers Centre provides a really good service for parent carers, helping them to get out and about when they can. It allows people to meet other parent carers. A lot of people feel like they are the only ones in their situation, so this helps them to share information and let off steam with others who really get it. I am a parent carer myself, I can relate to what they’re saying, which has been a real positive for my role too. Being recognised as a parent carer gives you access to the right support.
What about fundraising for parent carers?
Parent carers don’t receive much recognition. At times, they may be caring for a child, as well as a spouse or an older parent. They are often juggling several caring roles, and this goes largely unnoticed by the general public. With the right fundraising support, we can do so much more. Having a budget we can use to provide respite activities and events is really important. To give an example, I would love to hold an afternoon tea for our carers this year. Then of course, there’s funding for training courses, such as managing behaviours and understanding autism. There will be lots of parents who would benefit from this.