A word on the NDCS

It occurs to me that, while I've typed quite a lot about my trek, I've not said much about the charity for whom I'm raising money. [1]

Our younger daughter, Cora, is now 20 months old. She does most of what you'd expect from a child of her age. She walks, she climbs, she runs, she falls over. She raids the fridge and makes a mess when feeding herself. She plays with her toys and her siblings. She seems to have an innate mastery of remote controls and takes delight in putting things in the rubbish bin (including, I suspect, a small camera that we haven't been able to find for several month). But she doesn't speak.

Her newborn hearing test picked up a problem, which was confirmed a few weeks later. It's not been formally diagnosed, but she has many of the characteristics of Branchio Oto Renal Syndrome, a genetic disorder in which structures in the ears, neck and kidneys fail to form properly during gestation. In Cora's case, the scans have revealed nothing wrong with her kidneys or neck, but she has no auditory nerve in her left ear. Her other ear is theoretically capable of hearing normally, bur she has a persistent case of glue ear - so most of the time she can't hear very much at all.

Resources are stretched in the NHS, and Cora's appointments with the specialists often end up being several months after they should have been (Concerned parent: "The doctor said we should come back in September" Harried receptionist: "I'm afraid the earliest I've got is November"). And while there are speech therapists who specialise in the very young, their priority is - rightly - with children who have worse problems than Cora.

Cora is lucky. When she's a little bigger, she should be fitted with grommets to drain the gunk. Once she can hear reliably with her good ear, she should get back on the developmental track, attend a mainstream school and lead a normal life. But we can't help worrying, and comparing her vocabulary with that of her sister at the same age. While Elspeth was by this point speaking in long, multi-clause run-on sentences that could take upwards of five minutes to complete, Cora's facility with language currently consists of: "No!", "No no no no no!", "Oh no!" (said with a Geordie accent, for no apparent reason), "Hullo!", possibly "Daddy!" and the British Sign Language signs for "drink", "hot" and "dog" (which indicates a set of practically all animals, including birds and her immediate family). In an otherwise talkative family, that's tough to cope with.

Which is where the National Deaf Children's Society comes in. In addition to campaigning for the rights of deaf children (one segment of society who, quite literally, cannot speak up for themselves), the NDCS offers resources and a community that helps the parents of children with hearing problems cope with and adapt to their child's disability. Learning that your child has a disability is bewildering and it is hard know what to do. Without the NDCS, we would probably still be struggling to understand how to help Cora now, and what to expect for the future. A helping hand and a way to reach other parents in the same situation means a great deal.

There are estimated to be over 45,000 deaf children in the UK. The NDCS has five fundamental beliefs about these children:

1. Deaf children can do anything other children can do, given early diagnosis and the right support from the start.
2. Deaf children should be involved in decisions that affect them at as early an age as possible.
3. Families are the most important influence on deaf children and young people, and need clear, balanced information to make informed choices.
4. Effective language and communication skills lie at the heart of deaf children and young people’s social, emotional and intellectual development.
5. Deaf children should be valued by society and have the same opportunities as any other child.

These might sound straightforward, but sadly the evidence is that we are a long way from offering deaf children the same opportunities that other children have. The facts are shocking:

• Deafness is not a learning disability, yet 65% of deaf children in England fail to achieve five GCSE grades A*-C (including English and maths).
• Deaf children are vulnerable to isolation, bullying and poor self-esteem.
• Deaf children are 60% more likely to experience mental health problems compared to other children.
• Deaf children are more than twice as likely to be abused as other children.

Are those statistics acceptable in a modern, caring society?

95% of the NDCS's funding comes from people's donations. Please give generously and help change the lives of the 1,600 hearing impaired children who are born in the UK each year.


[1] Important footnote: I'm paying for this adventure myself, in its entirety. None of your generosity will go towards Jason having what passes, in his slightly peculiar world, for a jolly. All of it will go to the National Deaf Children's Society. I know I've said it before, but it bears repeating.