McCain podcast 5: Communication with Katy
In the fifth episode of Table Talk, Paddy and Christine meet a mother of twin boys to chat about communication. Katy and Rob have three-year-old boys, Edward and George.
Edward was born with Spina Bifida and has a complex mix of conditions including hydrocephalus, which affects his development and chiari malformation, which affects his breathing and cognitive abilities. He is considered unsafe to swallow so is peg fed.
“He has scoliosis and hemihypertrophy, so one side of his body grows longer than the other. In itself this isn’t a big deal but it actually makes him at much higher risk of childhood cancers, so we have to have constant tests for that.
“Edward also has a rare type of hearing loss where the signal to his brain doesn’t work properly, which he finds quite distressing.”
“We also use Makaton as Edward is non-verbal. He can’t sign himself but his twin brother George is really getting the hang of it. It’s so nice seeing George communicate in sign to him and they are starting to do it in nursery so hopefully he is starting to understand.
“He has a lot of things against him in life, but he just seems to live more in the moment. All Edward wants is cuddles and human contact and he’s cheeky, so cheeky.
“We go to our local hospice and there’s a music therapist there who does a lot of work with him and it really brings him out of his shell.”
How Family Fund helped
“The first grant we received was two years ago for sensory toys and we are still using them today. We got a sensory ball that we would have never been able to afford. It’s a really big ball and Edward’s physiotherapist was very excited when she saw it as it will help his core strength.
“We also got some lights that have really helped his eyes to track properly. And we got a train set, a musical one. Edward will look at every noise it makes and it’s nice because it’s something he can do with his brother. The sensory toys haven’t just helped Edward, they help George and their friendship as well.
“Then in lockdown our cooker broke, we couldn’t get out to look for a new one because we were shielding, so we applied to Family Fund.
“Having a child with a disability is more expensive. Financially, it’s a big strain but things like the grants from Family Fund are just a game changer. We couldn’t afford those things because we’re busy paying £100 a day to get to an appointment in London for Edward.”
“A lot of stuff with Edward feels really overwhelming and Family Fund don’t make me feel like that, it’s always an easy process.”