I’m always mindful when writing as a carer of 43 years that I’ve had it relatively easy.  Jen has been blessed with good health, so our challenges have mostly been intellectually, socially and emotionally focused.

The lot of a carer is fraught with uncertainty and often significant financial sacrifice.  We find ourselves needing eyes in the back of our heads as other children grow and develop whilst your child for whom learning disability is a part of their DNA achieves smaller yet no less significant gains.  In my day Portage was the flavour of the month.  We had the kit.  We followed the system.  We did our best.  I’m not at all sure if it helped or not.

What definitely helped was being proactive, digging and delving for ourselves, finding ways forward we felt were right for us in our circumstances.

With Jen 9 months old our decision was to embark on patterning under the watchful eye of BIBIC – gross motor stimulation to achieve neurological organization.  It felt like a miracle as we witnessed untold unexpected delights unfold in front of our eyes.  Now Jen was making progress achieving things that had previously defeated her and us.  This wasn’t the medics or educationalists telling/advising or even suggesting what we should do, this was us taking control of the situation bringing our own determination to how to conduct our family life.

As carers we respond in the moment, but understanding the trigger, the challenge, the perception or interpretation of the person with learning disabilities is a whole other artform.  Over the years our intuition develops and we hopefully become more adept at reading between the lines.  There will always be things that are too complicated to make sense of where we as parents need to seek professional intervention, and perennials you think you’ve put to bed but then come to the fore again, often when you least expect it.  This is the nature of learning disability.  As Jen’s years increase my role and that of her carers is to protect her from her own vulnerabilities; from her inherent propensity to sit – unless her choice of music is playing, from her apparent coherence and comprehension when making decisions or listening to instructions.  We must, and need to continue to be aware of all conversations and commitments Jen might make.

An astute teacher once said ‘If Jen wants to learn this it’s my duty to find a way to teach it in a way that she can hear’

We must check and double check her understanding.  Jen is a visual learner so it always helps to write things down affording a point of reference that can be referred back to.  This is one reason why the house diary is so important.  Jen adds to it, others add to it, and over time the picture of the day is painted.  Try as we might, time still remains a relatively meaningless concept – unless it involves food – so the diary also helps flag those occasional double bookings of time.

To see Jen or to ignore Jen?

The other day Jen had people visiting.  We arrived 15 minutes early only to discover there was no milk for hot drinks, so to rectify or not?  The shop is a brisk 5 minutes from her home.  I suggested that we could get there and back in time if we put our skates on, to which she pulled a face but reluctantly put a jacket on.  I double checked ‘Is this a good idea’ with echelons of negative energy oozing from her.

But then we played.  On exiting the house we motored down the runway to achieve take off speed – up and away with legs and arms working hard – at 35000feet I was walking really fast with Jen jogging beside me happily reminiscing what an amazing time we’d had in New York together last November.

We zipped into the shop, bought the milk, and Jen initiated ‘flying’ home gamely and happily jogging all the way with no further encouragement needed.  Now she radiated pride as she shared her most recent achievement with Malcolm and her visitors.

‘Do you see me?’  Or on this occasion, ‘Do you see me and my vulnerabilities?’

I’m all about opportunism, problem solving, and creating win win situations whether that’s buying a pint of milk or living life to the full. Please do get in touch or leave a comment below.