Mum Katherine tells us about her profoundly deaf son Ethan, aged 10. When Ethan started walking at the age of 4 and now learning to speak, their story is the one of triumph against adversity.
Ethan is my only child. I had normal pregnancy and then he was delivered through C-section. His hearing was first tested at five weeks after we expressed concerns to our health-visitor (this was pre neo-natal screening). The machine was showing odd signals so the audiologists assumed it was broken and we were asked to come again at eight weeks. The test confirmed that Ethan was profoundly deaf. I was devastated. I knew nothing about deafness. I kept asking silly questions
like: “How long will he have to wear his hearing aids?”, and “Will he ever be able to drive?”.
I’m an actress and singer, so speech and music are an incredibly important part of my life. I always dreamt that I’d share my love for music with my child. Instead, I believed he would never have access to these things.
Support from the National Deaf Children’s Society (NDCS)
Following Ethan’s diagnosis, I wanted to learn everything about deafness. I didn’t know where to start or where to go for information.
I came across NDCS when Ethan was little by searching deafness online and then ordered lots of literature which was vital for me to understand what deafness meant and how deaf people might communicate.
I started signing with Ethan when he was five months old and I was able to share the NDCS fingerspelling card with family members so that they could begin to have some communication with Ethan. I am now studying for my BSL Level 3.
NDCS helped us massively after the local authority wanted to place Ethan in a specialist school for children with physical disabilities. Ethan has a muscle condition and started walking at the age of four, but it was his hearing loss that he needed support with in school. A family officer from NDCS supported us in discussions with the local authority and Ethan eventually got a place in Laycock Primary School in Islington which has a hearing impairment unit.
Since then I’ve been turning to NDCS for help more often and their Family Officers have recently helped me to secure a place at secondary school for Ethan.
Every day life
Ethan currently goes to Frank Barnes School for children whose main language is BSL. Ethan is doing really well there. He loves sports like golf, tennis and swimming as well as sign performing – where he uses signs to perform songs. He is part of the Kaos Choir for Deaf and Hearing Children, and performed with them at the Olympic Opening Ceremony in London last year.
The biggest challenge for Ethan is communication. He currently relies a lot on sign language for depth of communication, which means he can’t have a proper conversation with people who don’t sign unless I interpret for him. As he’s growing up and wants to be independent that can be problem for him. Conversing with adults is generally easier for Ethan as they are consciously adaptable, but hearing children often find it harder and a little embarrassing, and can unintentionally exclude Ethan, which leaves him feeling isolated.
In the My Life programme (which was on air in March 2013), Ethan sets up his own band with his best friends and becomes popular with many children, as he performs his song to a crowd of 400 hearing children. Being on the show was an amazing experience for Ethan. Ethan may not be able to have a proper conversation with hearing children, but in the show they all want to get to know him.
Ethan has recently met the Downton Abbey’s star Jim Carter while filming for the National Deaf Children’s Society’s Stolen Futures film to campaign against cuts to services for deaf children. The campaign was launched to stop cuts to services like Teachers of the Deaf and Speech and Language therapists which deaf children like Ethan rely on to learn at school and reach their potential.
Ethan is growing in confidence. When he performs he comes alive, showing his emotions and sensitivity. One day, when he came to watch a musical performance of mine, he was so engrossed in it that my colleague was inspired to write a song about our joint love of music and the curiosity I feel about his miraculous access to it and huge passion for it. The next day when she showed me the lyrics, I exclaimed: “You’ve said everything I’ve been feeling all that time!”
Ethan has changed my life and taken me on a massive journey. I’m very proud of him.
Ethan also featured in a film alongside Jim Carter:
The film is available at http://youtu.be/S7H_Xitdv3Q and calls for the Government to stop making cuts. NDCS urgently needs 100,000 signatures on its e-petition at www.ndcs.org.uk/petition to secure a debate in Parliament on the issue and force the Government to take responsibility for the cuts that are setting thousands of deaf children up to fail.