Rita Simons on raising a child with hearing loss
Ears, Nose & Throat When her daughter was diagnosed with hearing loss, EastEnders actress, Rita Simons, had some tough decisions to make for her little girl and her whole family.
“It was when Maiya was about five months, I was told she had problems with her hearing. It’s never a straight forward thing, so I just asked out right, ‘tell me, is she deaf?’ When they said ‘yes,’ I just picked up my babies and walked out. I didn’t want to believe it,” recalls Rita.
The journey to that point hadn’t been easy for Rita and her husband, Theo; Maiya had been sickly from the moment she was born. During her first few months of life, she had been in and out of hospital with breathing difficulties, jaundice and suspected meningitis. Just as the family thought life was beginning to stabalise, news that their beautiful little girl couldn’t hear was almost too much.
Coping with Complications
“It’s so overwhelming; there’s so much to take in,” continues Rita. “But, thankfully I took a deep breath, walked straight back into the clinic and asked ‘ok, what do I have to do?’” There was, indeed, a lot to take in. Maiya’s situation was not completely straightforward.
"She suffers from a deformity in her inner ear, which means that, not only does she have hearing loss, but that it is likely to worsen over time."
“There are all sorts of options and a lot of advice out there; it’s so hard to know what’s right,” says Rita. “We got great support from the Children’s Peace Centre in Watford. The team were, and continue to be, amazing. But ultimately, it comes down to what you instinctively feel is right for you and your child.
“Maiya had some hearing and we wanted to give her the same opportunities as her twin sister. By six months, she had her own hearing aids, but it was a horrendous time. She was teething and would often pull them out. I had plenty of moments when I was a strung out mother pulling into a layby, because Maiya had yanked out her hearing aids and flung them on the car floor.”
However, Maiya soon got used to wearing them and quickly became a chatty little girl, developing at a similar pace to her twin sister. Like any toddler, Maiya had tantrums, but it was often difficult for Rita to distinguish between what was “normal” toddler behaviour and what was accentuated as a result of her hearing difficulties.
“She would often complain that clothing was itchy or uncomfortable and we found out that she had an overly sensitive sense of touch,” explains Rita. “Of course, she also gets agitated if she gets tired and has had to concentrate for a long time, but with the help of an occupational therapist, we’ve got exercises to help her cope.”
Fighting for Normality
Five years ago, the family were the subject of a documentary Rita Simons: My Daughter, Deafness and Me, which charted their experiences as they considered their options for the future. In light of the fact that she was gradually losing more of her hearing, they had particularly difficult decisions to make about Maiya’s schooling and whether or not to opt for cochlear implants to aid her hearing.
"To all intents and purposes, Maiya has been raised as a ‘hearing child.’"
Having worn hearing aids since she was a baby, her speech was impeccable and so Maiya entered into a regular school along with her twin sister, Jaimee. “It’s been brilliant for her,” beams Rita. “Maiya is treated just like all the other children and she’s doing really, really well. I also think it’s great for the other kids because none of them see Maiya as any different to them.”
Four years ago, they also decided to have a cochlear implant put in Maiya’s right ear - the ear that was losing hearing most rapidly. Whilst Rita describes the difference it’s made to all their lives as “incredible” she is at pains to point out that, “A lot of people said some horrendous things at the time and I want to stress that it’s not for everyone. We made the decision we thought best for Maiya.”
The family sought the help of Great Ormond Street Hospital as they weighed up the pros and cons of the implant, which is basically an electronic medical device that is placed into the ear. There is no way of knowing exactly what impact the device will have until it’s in place. For Maiya, it now means that she can hear even when her other hearing aid is not in place, but it’s not a miracle device and Maiya’s hearing is certainly not perfect. There are certain tones that she struggles to pick up and, in busy situations where all noise is amplified, it can be tricky for Maiya to hone in on specific conversations.
“I never forget that Maiya is deaf,” says Rita. Now Maiya has the cochlear implant, Rita can wear a clip so the sound of her voice gets wirelessly transmitted to her implant inside Maiya’s head. “I always try to see situations from her point of view. If I think she’s missing out on stuff, I can let her know. I’m always looking out for her.”
In September, Maiya will face the next challenge as she moves to secondary school; a step Rita knows she will take in her stride. “Of course I worry about both my girls, but my greatest fears have nothing to do with the fact that Maiya is deaf,” says Rita. As if to demonstrate this perfectly, Rita describes how, earlier on in this year, Maiya successfully sang, danced and performed her way through a theatre school audition. No compensation was given for her hearing condition, and neither did she need it.
“I always try to see situations from her point of view. If I think she’s missing out, I can let her know."
There is no textbook for families who find themselves thrown into confusion as they are forced to make decisions for their deaf child, and neither is there a right or wrong way to go about it. Rita’s one aim was to raise her daughters with the same opportunities and it would seem that they are both thriving as a result. “I would urge other families in our situation to take the advice given but ultimately to listen to their gut and do what they think is best for their child,” concludes Rita. “Every family is different and you have to do what is right for you and your child.”