“Digital tools are her connection to others similar to herself.”
Sarah, mum to Isabella, spoke with us about how having digital access is a life-changing tool for her family.
Sarah lives in the Midlands with her husband and daughter Isabella, 15, who has multiple rare genetic and neurological conditions, and is a full-time wheelchair user. Isabella’s genetic condition affects her respiratory system, growth and immune system, and she had a bone marrow transplant three years ago.
Juggling hospital and school
“Fitting everything into daily life can be a challenge, as it takes a long time to move between activities, both in the physical preparation and for Isabella to process changes. Day-to-day life involves juggling lots of hospital appoints around school and wheelchair-inclusive activities.
Isabella needs a lot of time to ‘defuzz’ from the day, and it helps for her to do activities, a lot of which are online.
We’ve just had an unplanned three-week stay at our local hospital, and digital is such a great tool in hospital to open up conversations because you’ve got something video or audio to connect with, and it helps to destress these very tense situations.
Digital opens up so many opportunities
We were lucky to receive a grant from Family Fund for our iPad because it has the majority of SEND apps, but they are extortionately priced. Isabella attends school part time now, so she uses her iPad to keep up with learning and keep her brain engaged, as well as socially to connect with others.
I’m not from a digital background, so I still encourage art, play and going out into nature, but I think all of them are great. Isabella loves to play on her Switch, tablet, Nintendo DS and other games consoles. And I think it’s very important, because otherwise you just don’t see anybody else – we would miss that hugely.
Many of Isabella’s interests, such as learning musical instruments electronically, are only available and accessible to her via Apple apps too.
She is also immune compromised, so if family or friends have got anything she can’t physically see them, but this way, she can still connect, send jokes and videos.
Digital skills
Isabella loves the Family Fund workshops, because it challenges her and she has to focus. She learns things that you wouldn’t get in school and she loves the activities.
She’s very clever and loves to be challenged. She doesn’t want to do anything particularly too easy. The problem with other online stuff that’s for the general public, it’s either too fast-paced or not understanding of individual needs.
That’s why the Family Fund workshops are great; she feels it’s a very comfortable, safe place. I can see when she comes off them, she’s buzzing and she spends another hour finishing off whatever she’s been doing first – and then I get to talk to her!
I know people may see a kid on a tablet and they think it’s bad – well, actually, no. And particularly for SEN families, it’s actually a really useful tool.”
