What is, ‘Coping’?

Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

Whilst composing a post about, ‘Scruffy Hospitality’, my mind wandered into a consideration of my relationship with my mother and the differences in attitude between us.

One of the most cutting things she has ever said to me was: ‘How will you cope with a disabled child? You can’t cope with the two you’ve got’.

I was shocked rigid by the blatant injustice of it, and didn’t answer back.

Or perhaps I was silenced by the little voice, nagging away in the back of my head, saying: ‘She’s got a point, you know.’ I’m not one of life’s copers, not like she is.

My mother worked full-time and kept the house immaculately, aseptically, clean, tidy, and carefully arranged.

She was ruthlessly organised and efficient, never putting off till tomorrow what she could do today.

She cleaned the windows religiously on a weekly basis with hot soapy water, rinsed them with vinegar and buffed them up with scrunched newspaper.

She used three separate cloths for dusting, one to remove the dust, one to apply polish and the third to rub it to a shine.

Visitors were swept straight up the garden path and into the pages of Woman and Home.  

In my house there is a pop-up bin in the kitchen where I put any clean laundry that I have not yet got round to ironing; things can always be pulled out and rubbed over if they are needed.

I clean my windows with a green spray from the supermarket and a bit of kitchen roll; I use the hoover to remove dust from all surfaces, high or low, soft or hard.

All this despite the fact that I have not gone out to paid employment since my eldest child was born. I am a shameless slob.

Perhaps she forgets that I have three children; that I have raised a son who is on the Autism Spectrum with no outside intervention or help.

There simply wasn’t any available locally at the time, because our son does not have a learning disability.

She probably doesn’t realise just how exhausting it is to start each day with a battle of wills with my youngest, who has Down’s Syndrome; nor how important it is to put that exhaustion, and the causes of it aside, so that you can hold your patience and remember to have compassion for his difficulties.

She probably doesn’t know that I haven’t found any of this particularly hard.

I think she also overlooks the fact that she had just one, quiet, solemn child, live-in childcare courtesy of my (now late, then retired) grandmother ... and a prescription for Valium throughout most of my childhood.

I used to think I must have been a really horrible child to drive my mother to the point where she needed tranquillizers.

But now, pondering her attitude to housekeeping and entertaining, I am beginning to wonder if I was the cause of it.

Was her anxiety actually driven by her desperate need to, ‘keep up with the Jones's or, at least, her perception of the Jones's, and what they had, thought and expected of others?

Knowing a little about her background now, I understand where this painful internal pressure to conform, in order to be approved of, came from.

She became what she needed to be.

My circumstances mean that I, and my family, can never conform.

I have had to learn to live with this.

In order to do so I have had to let go of any need for the approval of others, and therefore, any need to conform to their expectations.

My eldest son is now an independent young man, living a perfectly ‘normal’ life at university.

Despite being sandwiched in between two brothers with additional needs, my daughter has escaped the mould of the typical young carer; I give her a decent share of my attention, as well as opportunities for personal enrichment, and time to spend with her friends.

Freddie is, by and large, a happy, confident child, who perceives that he is loved.

Anyone nosey enough to look in through my quickly-wiped windows can see this.

They can’t see the undone ironing.

What is coping but doing what you need to do to make it through each day in one piece.


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