Tuesday, 17 October 2017

You’re not listening’ were the words that seemed to be repeated over and over as my daughter sat, patiently, not quite understanding what was required of her from the specialist audiology department at Great Ormond Street Hospital.

Guest blog by Shelley Ensor:

If I had heard it once, I had heard it a thousand times.  My daughter WAS listening. Listening harder and more intently than anyone else in the quiet testing room. Looking back, I should have intervened.  My daughter had, after all, been referred for testing for Auditory Processing Disorder and the Audiologist was a specialist for the APD clinic. 

It got worse.  My daughter was diagnosed with APD at the 0.4 centile.  This is classed as hearing deaf.  But ‘don’t worry’ said her consultant, cheerily, ‘she is a pretty girl, it’ll be fine’.  The implication being that as my daughter was fair of face, it didn’t matter that she was disabled.  It added insult to injury.

And that was the end of the five year journey that had culminated in the visit to GOSH - but the beginning of a new life.  

The previous five years had been one long fight trying to get my daughter the services she required - from the paediatrician blinkered only to his specialism of ASD to the arduous justification to the GP that a referral to GOSH was needed – and why.  I’d like to say that our story is unusual, but I fear it is all too common.  The cross overs between Aspergers traits in girls and APD is high.  No one believed me but I knew, I just knew, that Aspergers was not what the issue was.

Post diagnosis nothing much changed.  We had been left high and dry; no specialist support and an NHS SLT who didn’t have the time to research my daughter’s condition and was trying to discharge her from services. 

I researched and researched and researched some more. 

I grieved.  I still grieve.

And I hurt.  I hurt for my clever, kind, thoughtful and compassionate girl who was – and is – treated as though she is stupid because she doesn’t quite catch a word or needs to have things repeated, with no redundant language, over and over again.

There are days when you would think that there is little wrong.  These are days that are quiet, where she feels safe, when she is rested.  She can hold a conversation then and is her beautiful, delightful, innocent, highly intelligent self.

But the days where it is all too much mean that she can barely understand one short task at a time. When she is tired and overwhelmed even the sound of the wind in the trees is too much and totally unbearable.  She finds life impossible and this is characterised by angry outbursts now - but when she was younger she would self harm in utter frustration.

There are things that she may never do. Right now she is unable to sequence, making everyday tasks so hard, let alone the complex curriculum requirements for subjects like Maths.  She cannot access a foreign language and at 11, is only just beginning to like music.  She finds peer relationships and social situations very hard indeed.  She becomes so tired, working at 200% just to be able to roughly follow a conversation with a group of people.  She is not safe crossing a road. She wouldn’t be able to follow directions if lost. People become impatient, talk over her, won’t let her finish her sentence. She sometimes stutters as a result, never quite sure if she is welcome to join in. Childhood games change rules quickly – she is left playing one game whilst the others involved have moved on to another with a different set of rules.  No one has explained this; she stands alone, unsure, desperate to belong.

These are painful parenting observations, no one ever wants to feel that their child is being excluded.
And then there is the telephone.  There are no private telephone conversations in our house.  My daughter’s relationship with her grandparents, whom she loves dearly, is held over speaker phone with either myself of my partner repeating the conversation so that she can respond.  In the end she simply gives up, with a shrug and a shake of her head.  Fortunately Skype and Facetime make these conversations possible as she can see their faces, read their lip patterns at the same time as processing what she is hearing.  It’s not perfect, but its better.

The fatigue that children who are deaf suffer is well documented; children with APD suffer this fatigue too and in addition there is the constant, unrelenting need within the family dynamic to constantly repeat conversations, ensure safety and to keep a watchful eye on how other people behave towards her. 

It is exhausting.

 What hurts the most is that my daughter has no idea when people are being unkind and can’t process it quickly enough to respond. She is yet to learn to advocate for herself - and her condition is difficult enough for an adult to explain.  As my daughter approaches her teens and young adulthood, I confess I have deep fears for my girl, who is highly vulnerable.

There is no cure for APD although the condition can be supported.  Strategies that we have found useful are:

1.       Signing – we use British Sign Language in English word order, which is known as Sign Supported English.  (I little knew when I started my baby signing organisation some years ago as to how much a part of my life it would become and I feel very fortunate to know that my daughter has always had this support since babyhood)  Using signing relieves a lot of distress and stress for her and for me.
 I was shot down in an APD group for suggesting the use of signing to support children with APD as ‘they need to learn to get on in the real world’.  Well I firmly believe that the real world needs to make communication as accessible as possible for everyone and with BSL now being pushed for inclusion in the National Curriculum I have high hopes that it will benefit so many children and young people, not just those who are deaf.

2.       Short, clear instructions or tasks or conversations.  Never any more than two points that need to be remembered. 

3.       Visual cues and reminders

4.       Talking through our day, slowly.  What is happening, now and next.

5.       Creating downtime and quite spaces in our day for processing and recovery.

6.       Expert support and strategies for helping our daughter to be the best she can be, such as the gentle, practical and patient support of Libby at Small Talk.

7.       Taking things slowly

8.       Advocating for our daughter and helping her learn to advocate for herself.

   Shelley Ensor

Shelley Ensor is the founder of Little Signers Club (www.littlesignersclub.co.uk).  When she is not sharing her love of signing, and how it benefits children of all ages, she can most often be found with a cup of hot chocolate around a campfire.  She journeys through parenthood accompanied by three small people of 11, 10 and 5, the eldest of whom was diagnosed with Auditory Processing Disorder at 0.4 centile via Great Ormond Street Hospital in 2015.

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