When I had my daughter Bea, I was already a mother. Bea had a big sister, who was 21 months her senior and I was fortunate that I already belonged to a community of mothers I had met through NCT, nursery and various parent child groups. Bea has 18q deletion syndrome. A diagnosis we received when she was just 2 weeks old after a stint in neonatal. We knew some of the physical and medical impacts of the syndrome, but there were many unknowns. And so, with baby Bea (as she soon become known) I tried to take the same approach to parenting as I had to date and I dived head-first and enthusiastically into various baby activities, parent groups and chats about parenthood. I acted somewhat flippantly as if the hospital appointments, increasing list of diagnoses and uncertainty around my child’s health and development were just part of the “normal” rough and tumble of being a mum. But it wasn’t the same as before. I quickly realised I wasn’t having the same experience as a lot of the other parents around me. While on maternity leave, I would take Bea to a baby gym class every Wednesday afternoon and come home crying desperately because my child couldn’t do any of the activities that others and even younger babies were managing. Even though I have incredible friends and a very supportive family and husband, I was desperately lonely and felt like I was the only mum having this experience.  

And then I met a couple of mothers through a shared child physio group, and we managed to organise going out for a couple of drinks together. A couple of drinks turned into hours and hours of conversation. It felt like the biggest and warmest hug of shared understanding. Our children didn’t have the same diagnoses, but our experiences overlapped and there was that surge of relief that I had found others who “got it”. The friendship circle grew and amalgamated into a WhatsApp group, that was a haven. A place to rant, cry, laugh and support each other as we navigated a less typical parenting path. My now partner in podcast crime, Rina Teslica, was on that WhatsApp group. Brilliant books (too many to name here), TV shows like the BBC’s ‘There she goes’ and a few podcasts also helped me to feel seen and less alone, normalising my parenting experience. Turns out it wasn’t just me or my child.

Finding community isn’t always easy to do. It can be really scary and difficult putting yourself out there and making these connections. Even when you have built up the courage to find others in a similar boat, the idea that you need to be friends with someone just because your kids share a diagnosis or an assumption that the first parent support group you attend will be your community is both optimistic and patronising. What community looks like for each SEN parent will be different. Sometimes just being able to listen to or read something passively can bring such comfort, other times engaging in face-to-face rants with other SEN parents is the tonic we need. Shared understanding and a lack of judgement are key, but it also helps to have the other ingredients of friendship. Often, I’ve found that it is other parents that provide me with all the information and top tips I need, from filling out a DLA application to where to get larger nappy sizes for an older child. It has been so vital in my parental journey, and I really want to help other parents who may be feeling isolated and like they are the only one, feel less alone.

This is why we started a podcast. The F**king Normal Podcast. We wanted other parents to feel less alone and hopefully get something close to the warm hug that we felt when we found a group of North London women in a very sweary WhatsApp group. The podcast is about sharing stories on the highs and lows of parenting disabled children, shining a light on and helping to normalise our experiences.

You are not alone. We are not meant to do this alone.

The f**king Normal Podcast is available on all podcast platforms. Please do give it a listen and get in touch if you would like to share your story with us or have any feedback or suggestions.  

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