by Carole Arnold

Mum to 2 hearing aid wearing children both of whom also have Down’s Syndrome

I remember so clearly that moment in hospital, New Years Eve 2004, when a paediatrician told me that my baby had Downs syndrome. He told me about so many things that he may not be able to do – maybe he wouldn’t walk, maybe he wouldn’t talk, maybe he wouldn’t be like other babies, grow like other children, behave like other adults when he grew up. It was a sad day. The fight in me on that day was pretty determined though that no-one was ever going to tell this tiny baby that he couldn’t do something ever again – that with me fighting his corner I would always make sure he tried. But 16 years on I still look back on that as a sad day.

This isn’t going to be a sad piece though, because when I think about hearing loss and Downs syndrome, I realise that it is one of the extras! Oh, how I wish I had known about the extras! 16 years of experience tells me it’s the extra things we DO HAVE that make the difference. It’s the extra things that define us and direct us far more than the things we do not have!

Within that definition of “extras” I do of course mean friends and networks of support, but I also mean diagnoses. George was born before the Newborn Hearing Screening programme had been widely introduced although he was given a test at birth because we stayed in SBCU for a few weeks and I always had the impression they were trying out the equipment! We were however told not to put too much emphasis on the results and so it was 5 months later when he had his first proper hearing test it became clear that a hearing loss was going to be an extra for us.

You see one of the things they failed to tell me when he was born and they were focussing on the maybe nots – was the EXTRAS. It turns out when you have Downs syndrome it means you often have EXTRAS! An extra chromosome within your genetic makeup and a predisposition to collect EXTRA diagnoses! A hearing loss was George’s first diagnosed extra. Following that test we were given Hearing Aids (another extra) and a whole raft of support from audiologists and technicians at the hospital as well as education support at home. I remember my first episode of Something Special on the television – oh yes – a devoted fan obsession with Justin Fletcher is also an extra I picked up for myself along the way. That was when I realised communication would also be an extra – not something I needed to fear he maybe wouldn’t – but with signing, something we could learn EXTRA. I thoroughly enjoyed learning Makaton in those early months – my only waiver in that being the day when my 1 year old toddler responded to a request to tidy some toys by removing his hearing aids and signing back at me “Can’t hear you” and then continuing with what he had been doing oh boy – turns out we had extra attitude too!

As he grew and his signing grew I went on to learn BSL to supplement my signing, an extra which has given me a great deal over the years and I still practise when I can. 

There was lots of debate in the early days about sensory neural losses and conductive losses and whether children with Downs syndrome benefitted from grommets… I have to say I remember it being all-consuming at the time but having made a decision for us that it was not an extra we were choosing I haven’t looked back. It can be so hard to navigate these new worlds but I have always adopted a ‘step back, is it right for us’ approach once I have collected together all the information I can find.

George began school a hearing aid wearer, a signer and soon settled in. I was keen to make sure any questions of other children were answered and so visited the class one day to teach them some basic signs and talk about downs syndrome and hearing loss as I felt they were his most significant barriers. I chose a book to read to the class “My friend has Downs Syndrome” and as I came to the end, asked the children in the class whether they thought they knew anyone with Downs Syndrome… they looked at me blankly…. They spoke in the book about a child who was good at some things yet found some things more difficult than their friends…… I reminded the children of this “Do we know anyone who has a round face and smiling eyes who finds some things a bit more difficult?” One little boy tentatively raised his hand “Father Christmas” he said “is it Father Christmas? He is great at stuff at Christmas but not so good at things all the rest of the year!” great suggestion says I – I don’t actually know if Father Christmas has Downs Syndrome, although I rather like the idea that he may have but no, I mean someone in our class…. After silence I said, “how about George?” “no” came a clear reply. “It can’t be. George is the cleverest boy in our class – he knows the most languages. Sometimes he speaks the same language as me and I can understand him clearly, sometimes he speaks in sign language and some of the time he speaks in a language I don’t understand” (referencing the times when his speech was unclear, when he would be trying hard to be understood but not quite managing it!) “That’s 3 languages – it cannot be George; he is the cleverest boy in our class.”

What would I want anyone to know about Downs Syndrome and hearing loss – it’s been an extra we had to embrace, but just as with all the other things I wouldn’t change the very many extra things it has given us along the way.