When deciding whether cochlear implants were right for Olive (4), who is profoundly deaf and has cerebral palsy, mum Jennie wanted to provide her with as many communication options as possible.
Providing Olive, who wears cochlear implants, with the choice of whether to hear or not was really important for mum Jennie and the rest of the family. “We wanted her to have that access to sound and hearing, as that’s how we communicate,” says Jennie. “We come from really loud, chatty families and love music. It was really important to us for Olive to have the opportunity to access all of that.”
Olive was diagnosed as profoundly deaf at around eight weeks old. “We and the medical professionals suspect that she wasn’t born deaf, but that it was an acquired deafness shortly after birth,” explains Jennie.
“We were originally really shocked because it came completely out of the blue. But over time, mixing with the Deaf community and meeting lots of deaf adults, we don’t actually see deafness as a disability for her and we’re really happy with how she’s supported.
“With having multiple disabilities, you can’t say one’s worse or one’s more important than the other. But, we came to terms with her deafness before we knew about the cerebral palsy. So we see her cerebral palsy as a disability and a priority because of her complex physical needs.”
With lots of decisions to be made, choosing the right hearing technology for Olive was very important for Jennie and Olive’s dad, Rhys. When she was first diagnosed, she was given bilateral hearing aids, which is commonly done to keep the auditory pathways open. “They didn’t really make any difference to her hearing,” remembers Jennie. “The audiologist said that because Olive’s hearing loss was sensorineural, she was most likely a good candidate for a cochlear implant. We found out she qualified for an implant on one side.
“We did think about it for a long time, because you’re sending your small child for a big operation that’s not medically essential. We went ahead, as we always wanted Olive to have that choice when she’s older. Ten months later, she qualified for a second implant on the other side. Many children get both sides done at the same time, so it was even harder deciding to send her for a second operation. She had responded so well to the first implant, we decided to go ahead.”
The family know opting for cochlear implants is an individual choice for every family. “It’s important when considering cochlear implants to think about how important sound is to you, how much does it factor in your lives and would your child be able to access implants at a later date?” says Jennie.
“But, more importantly, speak to people. Find your gang so your deaf child can have role models and you can get advice from deaf people who have had implants, people who wish they’d had implants or people who have had them and regretted it. Build up a really good picture of all the positives and negatives before you make such a big decision. It needs to be individual and you need to think about whether it’s right for you.”
With the decision about Olive’s hearing technology made, choosing how to communicate with her was the next priority. “We learned sign language because we knew she wouldn’t be getting her implants until she was at least 18 months old and we wanted a way to communicate with her,” says Jennie. “But, when she was around nine months old, we also realised that, physically, she wasn’t developing quite as she should be.
“We eventually went through the process of getting a diagnosis of quadriplegic cerebral palsy, which means that it affects all four of her limbs. She can’t walk, sit or stand unaided, but she’s a very determined little girl, and that doesn’t seem to stop her doing anything.
“Her cerebral palsy is a big deal for us. She’s in a specialist, resourced nursery setting with some mainstream peers. She should have started Reception by now but we were allowed to defer a year.
“When she starts school in September we’ve decided to send her to a special school because of the barriers she has to communication.”
Olive’s diagnosis of cerebral palsy came as another shock to the family and led Jennie, a speech and language therapist by profession, to opt for a total communication approach with Olive. “She’s what we call a total communicator,” explains Jennie. “Her understanding of spoken language is within the expected range for her age, so she’s semi-verbal and uses speech, British Sign Language (BSL), which is slightly hindered by her cerebral palsy, a lot of facial expressions and a communication aid as well.”
The importance of providing Olive with many ways of communicating is apparent on the days or weeks that she chooses not to hear. “Sometimes she doesn’t want her ‘magic ears’ on,” says Jennie. “If she’s cross and has had enough, or if she’s tired, she’ll take her implants off. She’s getting better at telling us when she takes them off and she’ll tap her ears or tell us that she wants them back on too. On the days she wears her implants, it’s clear she loves listening and enjoys sound.
“We try not to make her put them on though, as the whole reason we got implants for her was so that she could make the choice. If she’s said no, we try and respect that and we then sign.”