Siblings of deaf children with additional needs
When there’s a deaf child with additional needs in the family, it affects everyone, including siblings. Here Michelle and Sue share how their daughters benefited from NDCS’s Big Weekend for families with deaf children who have additional complex needs.
Michelle and Jez are parents of Hannah, 13, and 10-year-old twins Jordan and Lewis, who are both profoundly deaf. Lewis has cerebral palsy, global development delay and epilepsy.
“The boys were born 10 weeks prematurely and Lewis was critically ill and needed heart surgery.
“Both boys had hearing aids at four months old. While Jordan developed clear speech, Lewis’s speech is delayed due to his other disabilities. As Lewis failed to make his milestones, we came to terms with the severity of his disability, accepting he’d need a wheelchair and would go to a special school.
“Lewis’s needs have moulded Hannah – she’s very caring and mature. But two years ago, after starting secondary school, Lewis’s disability started to bother her.
“Jordan also became self-conscious – he didn’t want to be ‘different’, grew his hair to hide his hearing aids and wouldn’t use his radio aid. He thought children were talking about him and isolated himself.
“The NDCS Helpline suggested taking Jordan to deaf CAHMS (Child and Adolescent Mental Health Services), which helped, then he transferred to a smaller school with a better special needs approach.
"NDCS's Big Weekend was amazing"
“We read in Families magazine about NDCS’s Big Weekend and went along. It was amazing. “We were assigned a helper and I was panicking as I’d never left Lewis with anyone, but after explaining his needs, I felt confident.
“Jez and I attended talks and met other families. We’d be eating our meal with other children in wheelchairs who were screaming and shouting. We felt like we belonged for once.
“Hannah and Jordan enjoyed the activities, including snow sports. Hannah met Caitlin and they realised their situations were similar and had a good moan about their brothers. They could be honest with each other and say things they wouldn’t say to us.
Hannah adds: “I used to think it was only me that had brothers with problems but after coming on the NDCS holiday I have found Caitlin, who is going through the same as me.”
Sue and Gary are parents of Caitlin, 12, and 8-year-old twins Connor, and Cieran, who is profoundly deaf, with global development delay and epilepsy.
“Cieran had meningitis when he was nine months old and spent three weeks in hospital. When he recovered he could no longer sit up or hold his head up and seemed unable to hear us.
“A scan showed Cieran had brain damage and six weeks later he was diagnosed as profoundly deaf. Hearing aids didn’t help, and neither did a cochlear implant.
“It was a very stressful time, dealing with Connor and Caitlin, and trying to communicate with Cieran. We used Makaton, pictures and objects but it was frustrating for him, as was being in a wheelchair, and he’d have endless temper tantrums.
“He’s hard work and what we can do as a family is restricted. When he’s throwing a big tantrum people stare disapprovingly. It makes me feel terrible, and Caitlin and Connor are so embarrassed. “But they love him and are very protective of him.
“The Big Weekend was brilliant. Cieran made friends with a lad and spent the whole weekend pushing his wheelchair for him. He has trouble making friends so it was fantastic. They’ve stayed in contact by email and have met up twice.
"Caitlin felt really good about letting her feelings out"
“It was great for Caitlin to meet Hannah – they had so much in common. Caitlin really felt good about letting her feelings out and it helped her to realise that other people have the same problems.
Caitlin says: “It’s hard when no one understands what you’re going through, that’s why this NDCS weekend helped. I met new people like Hannah, and I also had a break from Cieran.”