Sense Holidays – for Mylo, it was Disneyland

Ruth talks to us about how her little boy’s Sense Holiday benefited him – and the rest of the family.

Mylo, now age 6, was born with congenital cytomegalovirus (CMV), a virus similar to the one that causes chickenpox and cold sores. It resulted in hearing loss and cerebral visual impairment (CVI). He’s deaf and blind, non-verbal and is sensory sensitive.

He’s a very happy little boy, though – and very determined.

We were told he wouldn’t walk, but he’s taking steps and can cruise around furniture. He loves food, especially crisps, and if he wants something there’s no stopping him from trying to get it!

Peppa Pig books are his go-to. He can sit and look through them for hours. His brother, Seth, who’s eight years old, is very good with him.

When things opened up after lockdown, Mylo would go to the Sense TouchBase Pears centre in Birmingham, where he could use the facilities and have stimulation he doesn’t get at home.

We were nervous and excited about Sense Holidays

When we heard about Sense Holidays, they sounded great – lots of activities and the best care. But I was nervous about applying because of Mylo’s behaviour, which can be challenging. It was scary for us to put our trust in other people as Mylo can’t tell us how he’s getting on.

Another mum I know who has a child with similar needs, told me her son had been on a couple of the holidays and they’d been amazing. That pushed me to go for it.

Before the holiday, I had lots of conversations with the event leader, Scott. We talked about Mylo’s likes and dislikes, his behaviour, sleep and so on. It was like having a tailored support plan put in place.

I knew Mylo was in the best hands and when we dropped him off for the week, I was comfortable that this was what he needed. 

For this first trip, my husband, Adam, and I took Seth on nearby a holiday too. We stayed close to where Mylo was for a couple of days, in case anything happened.

We needn’t have worried. Along with Scott, Mylo had two people supporting him. In the pictures they sent, he was just beaming at them, so we could really see the connection he had with them.

Memories to treasure

All the holiday-makers put together a big scrapbook of their week with Sense, showing what they’d done every day with stickers and photos.

The scrapbook is something we can keep, and it gave us a peek into Mylo’s week and what he’d enjoyed.

I want to say a massive thank you to Sense. Other people don’t always understand that having a child with complex needs and behaviours has an impact on the whole family.

Mylo had the time of his life but it was also really important for us to be able to have that quality time with his brother, Seth. One night, at 9.30pm, Seth asked if we could go bowling, and we said, ‘Yeah, why not?’ Normally we wouldn’t be able to be out that late as Mylo just wouldn’t cope.

For Mylo to have a holiday like that – and for us to be able to have one too – is something I’ll never forget.