Wednesday 6 February 2013

Children With Special Needs - A Patient Testimonial


It was Dianna Harvey Kummer, the Palace cranial osteopath, who first
told me about the Palace, just as it was Dianna who suggested I write
this piece.

I could use this space to talk about how much the Palace has meant to
me as the mother of a disabled child over the last three years, I could
talk of wise and informed advice and warm gestures of friendship. I
could talk of Dianna’s amazing work with Liora, my daughter, or Sue’s
experienced, intuitive play therapy. Or Jean and Terri’s humour and
support and the bonds I’ve made with other parents.

But instead, I’m going to focus on the word ‘sensory’, which is bandied
around like nobody's business in the World of Special Needs Children,
but neither Dianna or myself really got what it’s all about until

So in case this is true of others, here is an explanation which chimed
a chord of understanding for both Dianna and myself.

In the early, shocking days of feeling my way through the terrifying,
grief-filled, angry fog of my child’s early life, I kept being told
that I must invite her to fiddle with cornflour - both dry and wet. I
was told that I must get prickly balls for her to touch, get her to
feel around in a plate of dry pasta.

But I never knew why. “It’s good for her,” the professionals told me.
“You must do it.” I felt guilty when I forgot, as I often did, as I
battled with attempts to balance medication for her uncontrollable
seizures and her kidney condition and the total hell of the ‘crash’
room (for emergencies) at the hospital. Each day - and most of the
night - felt like a sheer act of survival, without head-space for
something that I just didn’t get. I had instructions what to do, but
Liora didn’t seem interested and I couldn’t see why I was doing it.
Sensory? Eh? Who’s got time to Google and find out?

Liora is now six and - suddenly - the penny has dropped after an OT
friend came on holiday with us. This is how I understand it now:

When we’re babies, we may look like we’re lying there, chilling out,
doing nothing. But actually, we're exploring the world in a sensory
way, with our fingertips, with our tiny heels, with our mouths, with
the surface of our skin. A soft texture, a spiky texture, a warm
surface, a cold surface. And so we learn to perceive the world around
us and our place in it. I am a baby, this is the world.

If a child is too sick, or not what the tactless might call ‘normal’,
they miss out on some or all of these vital steps of development. So
they grow up without, perhaps, realising where arms end, or that at the
end of the arm, there is the hand, they might not understand the
dimensions of the body and how it fits in the world. That this body is

My OT friend described it as existing in ‘a snowstorm’ and trying to
negotiate through it. This is where the cornflour comes in. A hand can
feel sensation, silky, soft, dry, wet, sticky, mushy. Even if the words
are not there, even if the child doesn’t appear to be looking or paying
attention, the sensation gives vital information about the fact that
there's a hand at the end of the arm, feeling something, about his or
her place in the world.

It took me six years of Liora’s life to understand just how vitally
important sensory play is. On the advice of the wise Sue from the
Palace, and later from my friend the OT, I looked into joint
compression and tried it - possibly incorrectly. Immediate results.
Then I shouted and screamed about it at Liora’s school. Luckily Liora’s
class teacher is very open and she and all the assistants learned it
and practice it daily with Liora, as do my husband and I. And Liora’s
life has changed, she has far more sense now of herself and some
freedom from the constant sensory-seeking which was her life. So she
can start - at long last - to learn some communication tools.

I just wish I’d understood this when she was a baby, not when she was
six. How much time has been wasted? And I’m a British person with good
English, unlike some of the parents who are also being told to mush the

That’s why Dianna suggested I write this. I hope it makes sense and is
useful. It is, of course, totally subjective.