Advocating for Sybil

When I tell people about my daughter, Sybil (5), I say something along the lines of: “She was eight months old when we thought she might have trouble hearing”.

But, that’s not entirely accurate. Yes, she was eight months old, but it wasn’t so much an inkling that she might have hearing problems, rather a crashing realisation that I’d never actually seen her respond to a sound… ever. 

My husband, Adam, was playing with Sybil and she was, as usual, smiling and laughing, but paying no attention to the musical toys he had. I suddenly started wracking my brain for an example of her responding to any sounds, but all I could think of were the times a loud noise had made me jump and she’d not even flinched. The water pipes running past her bedroom that clunked loudly every time we ran a tap, but never woke her up. The other babies in our NCT group mesmerised by guitar music, while Sybil fussed, completely uninterested. The hundreds of times I’d joked that she was ignoring me when I unsuccessfully tried to get her attention by calling her name.

Getting a diagnosis for Sybil was a long slog. At our first audiology appointment Sybil wouldn’t respond to the booth tests. The audiologists ended up banging drums right behind her head, to which she was oblivious. A few days later I got a letter saying something like “… your child didn’t respond to sounds of 100dB. We will make another appointment in 4–6 weeks”.  

Four weeks?! I thought… not a chance! When I called the audiology office to hurry things along a lovely receptionist slotted us in the next day, but it was still about three months until Sybil’s profound deafness was confirmed. The audiologists we saw were wonderful, and worked really hard to get answers for us, but it’s quite hard to think of that time. I have so many memories of frustration, so many appointments with no answers, so much waiting and wondering. Finally Sybil was diagnosed with auditory neuropathy spectrum disorder (ANSD), a rare condition where sounds are received normally by the cochlear (explaining why Sybil passed the newborn hearing screen), but are not received properly by the brain.

It doesn’t come naturally to me to be a pushy parent, or to challenge professionals, but we knew something wasn’t right, deep in our guts, and we needed to be Sybil’s voice. Knowing we were doing this for her pushed us on, and when it came to choosing Sybil’s education we had to draw on our experience of advocating for her to ensure she was getting the right support. We felt that she would be best placed in our local mainstream school, and we went against the encouragement of the professionals we trusted and respected and chose a mainstream school rather than a hearing-impaired unit.

Although both were good options, our local mainstream school has an incredibly inclusive and supportive ethos, and we knew she could do well there, with the right support. Several times we were told that Sybil wouldn’t be eligible for an education, health and care (EHC) plan, but we knew that, by law, she was entitled to an EHC needs assessment, and we pushed back to ensure she got one. It wasn’t easy to get an EHC plan, but it was so worth it. Sybil is now happy and well supported in school, and progressing brilliantly. 

Sybil will always face obstacles in life, some related to her deafness, some not, but we’ll always be there fighting her corner!