Our friend Roger

It’s that time of the year again… no, I’m not talking about Christmas – it’s Disability Living Allowance (DLA) renewal time for us. Bah, humbug! Filling in that epic form is definitely up there on my ‘least favourite things to do’ list. Sybil is an absolute superstar, and we tell her that every day, so having to describe in excruciating detail all the things that she finds difficult and struggles with is, bluntly, a really depressing exercise. As well as the National Deaf Children’s Society’s guidance for filling in the DLA form, I’d recommend a lot of chocolate to get through it. I’d also recommend always saving a copy of the form when you submit it, so that when renewal time rolls around you can refer back to it. Luckily, we had done that this time.

Sybil is almost seven now, and we last applied for DLA when she was about to turn five. Not a huge amount has changed in that time in terms of her needs and access to sound, so I was able to copy and paste a lot of the answers across. But one big thing that has changed in the last couple of years is that we’ve acquired our new best pal, Roger, full name: Phonak Roger™ Touchscreen Mic. Roger is Sybil’s radio aid transmitter, and when paired with the receivers that plug into her cochlear implant processors, he (yes, he’s a he) allows her to clearly hear the voice of the person wearing Roger around their neck. Roger is a huge help in noisy or acoustically unfavourable environments, as well as across distances.

Filling in the DLA form got me thinking about all the ways Roger has helped us, and also how tricky it can be to ensure he’s being used appropriately. When our sensory support service first introduced us to Roger, they gave us and Sybil’s teachers a pretty lengthy tutorial in how to use him. At school he’s brilliant, as are the teachers, who have mastered the art of muting and unmuting themselves at appropriate times. They know when to use Roger, when not to, and when to defer to Sybil. At home we are pretty confident with him too. We charge him, connect him to Sybil’s processors, and make sure he’s working properly.

The tricky part comes when we need to introduce someone else to Roger. Roger makes a huge difference to Sybil at noisy gatherings, such as birthday parties. Large, echoey halls full of excited children, music, scraping chairs, clattering plates… without Roger, Sybil wouldn’t have a chance of hearing what an activity leader is saying. But 99% of the time, the entertainer has never come across a radio aid transmitter before. So I step in with a 60-second tutorial that goes something like:

“Hi, my daughter [gesture to Sybil] is deaf, she’s got cochlear implants [if they look blank I explain them as ‘fancy hearing aids’]. Would you mind wearing this around your neck so your voice goes straight to her ears? Thank you soooooooo much! Just press this button to mute yourself if you’re talking to someone else… otherwise she’ll only be able to hear you and not her friends… kthanksbye!”

I would never expect anyone who has had a radio aid suddenly thrust at them to be an expert in its use, but some people take to it amazingly well, muting it at the right times and checking it’s on before addressing the group. Most of the time they’ll need a little help though. The most frustrating thing for Sybil is when the person wearing Roger hasn’t muted themselves and has gone to talk to someone else. Sybil can’t join in with conversations around her when this happens, as all she can hear is the wearer. I’m trying to teach her to advocate for herself in this situation (by waving her hands around then miming pressing a button by her throat!), but often she won’t want to, which I don’t blame her for. So I’ll try to get the wearer’s attention and do the miming myself, or if that doesn’t work, I’ll just go and mute them myself. Most people figure out how to use the mute button after I’ve done that a few times. It’s a bit of a baptism of fire, but I’ve found that everyone Roger and I have accosted really wants to get it right and is more than happy to have a go!