My son is deafblind. Sense Holidays mean the world to both of us

Kate, Archie’s mum, shares how Sense Holidays give her time to do the things she likes, knowing Archie is having fun with people who know him deeply.

My son, Archie, has a golden aura and when he laughs, the room laughs with him. He’s just turned 21 and I can’t help but think about how far we have come.

Archie is the eldest of my five children. There were no signs that he might have a disability until he was about four months old. It felt to me that he might have a visual impairment and so I told the hospital. Two months later, he wasn’t doing the same thing that other babies his age were, like playing with their feet. At eight months old, he started having seizures.

We still didn’t know what was wrong

Archie’s health deteriorated but we still didn’t know what was wrong. All the scans were coming back normal, and we couldn’t get a diagnosis. There was no forum or support group for children like Archie.

Being told that Archie was also deaf really felt like the last straw. Knowing that he would never turn around when I called his name hit the core of the rawest nerve. Twenty years later, I still couldn’t tell you why it mattered so much. Thankfully, it was around this time that we first heard about Sense.

Finding Sense changed Archie’s life

We had our first visit from one of the Sense children and family support workers in January 2003. She played with Archie and watched him closely. That moment changed Archie’s life. The report that she wrote (which I still have) meant that he had to be taught by qualified staff. When she finished her report, she told us that it was important he was identified as deafblind.

A specialist helped Archie understand touch cues. She would touch his hand to let him know she was close and help him understand that there was a drink coming. When he was nine, the GP told us to stop looking for a diagnosis. Sense understood him and so I put all my eggs in a Sense-shaped basket.

I could see he was getting depressed

It is difficult to see immediately the difference that Sense makes. When lockdown happened and Archie was not getting his specialist support, he became withdrawn and disappeared into himself. All the services had shut overnight and there was no physio, events or sensory experiences. Although he couldn’t tell me, I could see he was getting depressed.

Archie started going on Sense Holidays about 11 years ago. Sense Holidays offer people with complex disabilities the chance to have a week away. We don’t always get to go but being offered one after Covid meant the world to both of us. There were so many opportunities for Archie to have a fun time. At home, I focus on making sure he is safe and has a fantastic routine, but life shouldn’t be about routine and getting through your day. He got to do things like sit in a hot tub and eat fish and chips on Blackpool beach with the lads.

On Sense Holidays, Archie is safe and happy

Sense Holidays also give me time to do what I like. When Archie is at home, I wake up thinking about him and go to bed thinking about him. On a Sense Holiday, I know he is safe and happy with people who know how to pick up on his subtle cues. It is so rare for me to have this sort of respite that sometimes, I don’t even know what to do with the time that has been given to me.

Sense knows Archie so deeply which is why I can rest when he is away. They have supported us for so many years now and I know Sense will play a huge role in our future.