The Norm

During the pandemic there was much talk of ‘the new normal’, people struggled to adjust and there was a global connection and understanding of the challenges many faced. Ultimately though, many of us got to go back to the ‘old normal’ as the pandemic passed. Some of course were faced with life-changing consequences.

For parents of disabled children who have found themselves on a different kind of parenting journey to the one they had imagined, a new normal is permanent. It evolves as well. It isn’t as simple as a new set of rules we need to abide by, that also apply to everyone else.

New challenges are thrown at us every day. Curveballs, new diagnoses, new medications, new professionals. Nothing stays the same. Random surprises and ‘only us’ things pop up (my Google photos bringing up a seizure video and asking if I’d like to ‘revisit the moment’).

We start to learn about other ‘normals’ in this world.

It’s normal to have to wait 2-4 years for a particular assessment or intervention. I had an OT call me the other day and inform me we’d reached the top of the waiting list. I had no recollection of going on to it. That’s because we were referred two years ago when my child was presenting with different challenges to those she is now. These ‘normals’ are very concerning. We seem to have reached an acceptance that it’s just the way it is.

Waiting lists like this for children (or for anyone actually) are not ok. We lose precious time when intervention and support could make a world of difference.

Our normal is not shared by most people, as the pandemic was. It’s often scary for others to engage with or think about. They don’t know what to say, how to react. It feels and is ‘othering’.

Social media brings with it many problems but for parent carers it can offer a community, a Facebook group full of people who have a good understanding of life as a parent carer; blogs such as Firefly’s that aim to support families in similar situations. There are also a series of brilliant podcasts out there including The Skies We’re Under created by and for parent carers.

Our normal can also mean we find ourselves in ridiculous situations

For example, I am writing this with a large bag of flour next to me on my desk. It is there because my daughter was trying to throw it onto the floor to see if it would break in the same way a bag of rice she experimented on did last week.

While our norm may be entirely different to most people’s, there are lots of ways to connect with others who are living a similar norm too. Connection with those who get it is powerful.