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Building confidence for Lily

Photo: Lily's parents faced extra challenges when finding information

Many parents feel lost and alone when they discover their child is deaf and are unsure where to get support. When Lily (4) was diagnosed, Monika faced extra challenges as English isn’t her first language.

Monika sat with her two-week-old baby Lily on her lap, fighting back tears as she heard the doctor’s words. Lily was profoundly deaf in her right ear, borderline-severe in her left ear. “We felt so alone,” says Monika, who along with husband Michal is originally from Poland. “I felt sad, lonely and confused. I knew nothing about deafness or what Lily’s needs would be.”

For Monika, who speaks English as a second language, understanding and finding out information was more challenging than for most parents. She was also very shy, which made it harder still being catapulted into a constant round of hospital visits and hearing tests, talking to professionals, making calls and chasing appointments.

“It was scary,” says Monika. “I dread speaking on the phone or being in groups of people. And I was afraid of failing to do my best for our child because of my fears.”

Meeting other parents

With Michal working hard to support them, Monika had to deal with Lily’s care by herself. It was a lonely, uphill struggle. Lily had hearing aids at five weeks old and at nine months she was referred to the cochlear implant programme and they began doing various tests.

At 14 months Lily’s hearing worsened and Monika watched as she became withdrawn, no longer joining in activities. “Her personality changed completely,” says Monika. “It broke my heart to see her hide in the corner. We had four Teachers of the Deaf (ToD) over time, all were great. One pushed the hospital for more hearing tests. Another told me about the National Deaf Children’s Society and another encouraged me to take Lily to playgroup – to build her confidence and mine.”

Lily became more confident and sociable and Monika grew confident enough to go on one of our newly identified weekends. “Wow, if only I’d known earlier,” she says.

“There was a really kind atmosphere there – staff were like family, the other parents too. One session leader spotted me hiding in a corner, came and chatted and then brought others to talk to me.

“The most amazing thing was that we parents could be totally honest about everything. No one judges you. We were told you have to put yourself in the heart of the deaf child and imagine how it is to be them so you can think what they need. The event was so useful; everything I should’ve known from the beginning – and I’d found it when Lily was 21 months! It changed my life and built my confidence so strongly.”

The Elizabeth Foundation

After talking to other mums there, Monika decided to push for cochlear implants – but, after all the tests, at 22 months old Lily was refused as she was slightly under criteria.

The mums also told Monika about The Elizabeth Foundation, a charity that helps deaf children from babies to pre-schoolers learn to listen and talk. “I joined their Let’s Listen and Talk interactive online home learning programme,” says Monika. “It was so helpful – you move through all the stages of listening and language development and learn as a family.

“Michal was often at work when we had visits from professionals or appointments so he wasn’t able to get information first-hand. However with this, the whole family could take part when, and as, we could.

As English isn’t my first language, it was nice to be able to read and reread information to understand it. Throughout each lesson, I could video call someone at The Elizabeth Foundation to ask questions about the lessons and Lily’s progress. Every time I opened my laptop, I felt like someone was sitting with me, supporting me – and it was only £10 per month.”

At 32 months old, Lily got cochlear implants and they noticed a difference. They could see her starting to listen and respond, still using her sign language which the ToD had taught them, but trying to learn speech too.

Sources of support

Now Lily spends two days a week at The Elizabeth Foundation and two days at a mainstream pre-school. “I worried about mainstream as I’ve seen from other parents that some aren’t supportive, but here they do an amazing job and go out of their way to find out how to support Lily,” says Monika.

“We’re starting to get back our happy, bubbly child again. She loves crafts and messy play, is sociable and has a great sense of humour. We feel full of hope for her future now.

“I’d say to any parent of a deaf child, there are three golden assets you can benefit from. First, your ToD. The weekly visit was a big support when Lily was young. My ToD said always ask the same questions of everyone, as views are different among professionals, and push to get the next appointment.

Second, the National Deaf Children’s Society – they’ve given us so much, from the newly identified weekend to their website, Families magazine and the printable guidelines on what to look for in a pre-school.

Third, The Elizabeth Foundation’s Let’s Listen and Talk, it’s such a valuable resource.

“During our four-year journey, I’ve found even British parents didn’t know where to find information. I’ve had extra challenges not having English as a first language, as well as my shyness.

“I wish I’d known about these things from the beginning. I didn’t have good basics as the parent of a deaf child then. That’s why I want every other parent to know.”