For National Carers Week I’m joined by Penny Wincer author of Tender: The Imperfect Art of Caring. Penny first became a carer for her mother in her teens and is now a carer for her son Arthur, who is Autistic. Penny shares her experience coming to terms with her son’s disability and accepting that their different path is still a happy one, how we can act as allies to families affected by disability and how to support the estimated 9 million unpaid carers in the UK.

What was your experience when you first realised Arthur was developing differently to his peers and what advice would you give another mother in a similar situation?

As Arthur was her first child she wasn’t concerned about her him not speaking at 2 and wasn’t really aware of what was ‘normal’ toddler behaviour and what was more extreme.

Between 18 – 24 months some things flagged but she didn’t seek support as she didn’t know it was different to typical parenthood 

There’s a myth that you ask for help you get it straight away. In reality, if you are concerned about anything it’s worth speaking up and getting the process started, you aren’t going to get rushed through and it takes quite a while to gain support

In the beginning she was given little extra support, referred to a speech therapist for an assessment at 2.5 years who said he was doing fine. Moved boroughs and got referred to a paediatrician which took 3 months but instantly began talking about an autism diagnosis, waited another 3 months for a diagnosis based on paperwork from the nursery. The diagnosis at 3 and a half led to 4 speech therapy sessions within 6 months, he still couldn’t speak or communicate non-verbally (pointing or following some else pointing). His EHCP was put in place by the time he was 4 

You’ve written about the jealousy you experienced when you first realised Arthur was developing differently to his peers, how have you come to terms with this comparison and what really helped you reach a place of acceptance of the path you are on?

I had never felt that level of comparison or jealousy in other areas of life so came as a big surprise but accepting the path I was on has been vital to not comparing. It has taken time but the first step is accepting that you are experiencing those feelings. She also read the work of disabled writers who wrote about their lived experience of being disabled. The hidden nature of being disabled can lead to a lot of fears and this really helped Penny alleviate them.

There’s no roadmap, as parents we are told that if we only do the right thing everything will turn out perfect but actually it’s too much pressure and none of us are perfect. We need to fight out against this culture that tells us we aren’t doing enough. 

How Has Being A Carer Helped You To Cultivate Patience

It takes a lot of self compassion and being gentle with yourself. Don’t try to criticise yourself into being more patient but allow yourself those days when things all go wrong. It’s not consistent, some days are better than others. 

A bad moment doesn’t make a bad day, things can be up and down and understanding that really helps build resilience and the ability to let these moments pass.

How can we act as allies to families affected by disability?

Offer support before being asked whenever possible, always having to ask can feel like a burden. Think: how can we make everything more accessible for this family?

How can we care for our carers? 

Sometimes people just need permission to look after themselves, it can be as simple as reminding them to look after themselves sometimes on a grander scale as a society we need to be better at caring for carers. The average unpaid carer has taken on 10 unpaid hours a week in lockdown and this needs to be remembered when we think about the future. 

7% of children are disabled, there are also thousands of hidden young carers and this is an area of society that needs more exposure so that more change is made to support these individuals

What are the greatest lessons your children have taught you

We have such fixed ideas about what will make us happy and we are often so wrong about that and when things challenge our expectations we realise that a good life doesn’t necessarily mean an easy life. 

What are the 3 lessons you hope to pass onto your children

To learn about equality and what it really means: everyone getting what they need not everyone being equal. 

You should only live for yourself 

That they are enough as they are

Where to find Penny:

Tender: The Imperfect Art of Caring

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