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.
