I had no immediate answer to this question last week. Nothing tripped off my tongue, there was no pre-prepared reply stored in my head, largely because I don’t consider myself this way.

Save for a handful of leaflets and forms that tell me to the contrary, this is not how I would choose to describe myself.

Maybe that’s because Natty’s physical needs aren’t very complex, or because caring for her isn’t a 24 hour role that is solely my responsibility at the moment.

Then again maybe it’s because I’m in denial.

Natty’s team and we her family will always support her in some form or another as we work towards her independence of course, but does that make me a carer?

I am simply a Mum that cares for both of our girls, albeit that one needs a little extra input at times.

Siblings

This question put me in mind of a Powerpoint slide I had seen recently.

It stated that only children with disabilities are considered to have siblings. Others just have brothers and sisters.

They also have Mums, Dads or guardians not carers.

And that’s why this question stood out for me. Somehow carer sounds a lot like a job, a hardship, a burden. And do such terms serve to further alienate and differentiate our children from society?

Labels that Support, Limit or Harm

There is no denying though that each and every one of us shapes our identity from a combination of labels. They make up a picture of how we see ourselves, how we feel about ourselves and that, in turn, affects the way our futures are built.

‘Carer’ and ‘special needs parent’ were labels that were handed to us along with Natty’s diagnosis. They weren’t titles we actively sought for ourselves, but they were part of the hand life dealt us.

And there is no denying that these labels can bring support. Just ask any parent whose child is awaiting a diagnosis and they will tell you how important labels are. Without them, packages of care can be denied.

Labels can limit and even harm us too, and many of you work tirelessly to end the use of offensive terms for those with disabilities, as well as encouraging the use of person first language.

The unique child behind the condition is what counts after all, let’s raise our expectations and not set limits with generalisations.

Self Care for Parents

And by the same token we, the special needs parents, the carers must be wary of focusing too intently on just a few of those identity cards in our deck. At our peril we ignore the rest, the seemingly unimportant, the trivial, the less pressing or serious. The ones that are always being pushed to the back.

I’ve heard too many stories of Mums putting off their smear tests because they have no time, until too late, of parents’ mental health suffering, or, like my own cautionary tail, suspected MS which turned out to be burnout.

Unless we heed the parts of ourselves that make life fun, and pop self care back on the agenda, then those labels like carer, advocate and teacher are in danger. Unless we remember the fully rounded people we truly are, we cannot bring the best of ourselves to those roles day after day.

Shuffle the Cards

So take a look at the labels cards in your hand. The chances are ‘carer’ is in there, but is there a card at the back that says, ‘park runner’, or, ‘film buff’, ‘chocoholic’, or, ‘loyal friend’, ‘knitter’, or, ‘bread baker’?

Bring them to the front. Just once in a while.

Have a re-shuffle, remember the person at your core, take control of those labels and use them to your advantage.

A Victoria Wood sketch recently reminded me that I used to be a step aerobics addict, way back in the 90s before I grew squidgy and tired.

I’m off to see if I can find a class to fit in with my current schedule, or pehaps a DVD I can pop on when the girls are in bed.

Might have to ditch that 90s lycra first though…

Let us know what your relationship is to the many labels in your life.

Are they a help or a hinderance?

Pondering how to muster new words, I asked my husband where he thought I should start a monthly musing.

“At the beginning,” was his flippant reply.

And just before I dismissed this as a tricky-topic-to-tackle-another-time, I remembered Welcome to Holland by Perl Kingsley, the story that gets handed out on day one to many of us.

“There’s been change in the flight plan and they’ve landed in Holland and that is where you must stay. You must buy new guide books and learn a whole new language.”

“The pain of not going to Italy will never, ever go away but if you spend your life mourning the fact you may never be free to enjoy the very special place, the very lovely things… about Holland.”

Many parents gain enormous comfort from its words, and perhaps it was just thrust at us too soon, or in a vain attempt to fix everything on day one, but somehow I have always shied away from it.

I clearly recall simultaneously thinking we’d never travel as a family again, and that it was bitterly ironic to try to explain that to me with a travel story.

Telling us that our life wasn’t heading where we’d planned was crushing to me at that time.

Now, with high termination rates for babies with Down’s syndrome and a law which allows the euthanasia of disabled babies up to 60 days after birth in Holland, the parallel with landing there seems even more ironic.

So how would I tell my new parent self differently?

I‘d say that I would still be heading to the same dream location I had planned all along.

One full of colour and ever-changing diversity. Nothing about becoming a parent had really altered after all, the same goals of happiness, friendship, love, togetherness and sharing our world with a small new person were the same.

There would always have been worry and tiredness and self-doubt along the way.

What had changed was how we were going to get to this destination. Our mode of transport had shifted from a jet plane flying high above the clouds, to a gently meandering paddle steamer.

Each SEND parent passenger is unique, just as our children aren’t created like neatly-stacked boarding passes, and the view from each seat varies.

Some of us prefer to hum to Adele on our headphones en route, while others choose to engage in conversation with their fellows.

There’s always a confident one at the helm and outside crew are present to make our journey more comfortable.

Some get travel sick before they find their sea legs.

Others are angry about the perceived downgrade and the length of time the journey will take in comparison.

The wise, however, immediately use the extra time to enjoy a pot of tea and invite the wary to their table.

Some are lucky enough to know someone aboard already. Others are experienced sailors.

But despite the eclectic mix in that vessel, we are all heading in the same direction.

As one unit we cut through the waves – to a place where inclusion, equality, support and acceptance of our children is standard.

There might be someone who nabs a sun lounger with a towel once in a while, but they are outnumbered by people who care about stopping you from falling overboard when the waters get choppy.

I for one am glad I’m in this boat. And I am glad that I am in it with you all.

If you aren’t familar with Welcome to Holland, you can read it here.