Our friend Roger
Disability Living Allowance (DLA) renewal time is upon us. Bah, humbug! I’m not sure what my least favorite thing to do is, but filling out that massive form. Sybil is a superstar, and we tell that to her every day. So, having to describe all the things she struggles with and finds difficult is a depressing experience. The National Deaf Children’s Society’s guide for filling out the DLA form is also helpful. I’d also recommend eating a lot of chocolate to help you get through. It’s a good idea to save a copy when you submit the form so you can refer to it when it comes time for renewal. We had reserved a copy of the state this time.
Sybil has just turned seven, but we applied for DLA last year when she was approaching her fifth birthday. It’s not like much has changed since then in terms of Sybil’s needs and her access to sound. I was able to copy and paste many of the answers. One big change in the past couple of years was that we acquired Roger, whose full name is Phonak Roger ™ Touchscreen Microphone. Roger is Sybil’s radio aid transmitter. When paired with receivers that plug into her cochlear implant processors, Roger (yes, it’s a man) allows Sybil to hear clearly the voice of whoever wears Roger around their neck. Roger can be a great help when in noisy environments or those with poor acoustics. It also helps to communicate across long distances.
I was thinking about Roger’s many contributions to our lives as I filled out the DLA form. It also made me realize how difficult it can be for us to use him appropriately. Our sensory support service gave us and Sybil’s teachers, a fairly lengthy tutorial on how to use Roger. He is brilliant at school, and so are his teachers. They have learned how to mute themselves when necessary. They know when Roger is appropriate, when he’s not, and when they should defer to Sybil. We are also pretty comfortable with him at home. We connect him to Sybil’s processors and charge him.
Roger makes a huge difference to Sybil at noisy gatherings, such as birthday parties. Without Roger, Sybil would not be able to hear what the activity leader was saying. Most entertainers have never used a radio transmitter. So, I give a 60-second demonstration that goes like this:
“Hello, my daughter (showing Sybil) is deaf. She has a cochlear implant [if the implants look blank, I explain that they are ‘fancy listening aids’]. Would you wear this around your throat so that your voice goes directly to her ears? You are soooooooooo welcome! You can mute your agent if you are talking to someone. Otherwise, she will only hear you.
It’s not likely that anyone who is suddenly given a radio-aid will be an expert at its use. But some people are incredibly good at it, muting it at the appropriate times and making sure it’s turned on before speaking to the group. They’ll still need some help most of the time. Sybil’s biggest frustration is when Roger’s wearer doesn’t mute themselves and goes to speak to someone else. Sybil is unable to join in on conversations when the wearer says, and she only hears him. I am trying to teach Sybil to be a strong advocate for herself (by miming a button on her throat by waving her arms around). She will often refuse to do so, and I can’t fault her. If that doesn’t help, I will go to the mute button myself. After I have done this a few times, most people know how to use the muted control. Although it’s a baptism by fire, I’ve found everyone Roger and I have approached really wants to do it right. They are more than willing to give it a try!
