In response to our survey on life in lockdown for families with disabled children, we asked parent carers to share their experiences.  Here is Emma’s story…

“I have three children. My eldest aged 16 and my youngest aged 4 have autism. My 14 year old is neurotypical. My eldest’s main difficulties are social related issues. There are others as well but this one affects her the greatest. She also likes to be very organised and enjoys structure and routine. While school is very difficult for her, the routine is an important part of her managing day to day. Initially, when we were teetering on the edge of lockdown and nobody knew what was really happening, this was a particularly stressful time for her. The unknown, the uncertainty, the inability to plan ahead. As soon as definitive decisions were made, her mood improved greatly and she created a new routine for life in lockdown. But here we are again, with talk of schools returning and being drip fed information…maybe this, maybe that…the up in the air concept is building her stress levels again. And now she has something else to be anxious about. A distinct fear of germs she never had before.

“My youngest has similar traits to his sister but his biggest issues tend to be sensory, control and change. He has hyperacusis, problems with textures and smells and going outside terrifies him. He’s living his best life getting to stay home everyday. The only place we’ve managed to get him to for the last year is nursery. And that’s been a physical battle wrestling him through their doors when he is in a full meltdown. So, with these external stressors removed and able to manage things better at home in a nice relaxed, controlled environment it’s been lovely. However, he is due to start school this year. He was due to have an enhanced transition. He will still be starting school but now with even less of a transition than standard!! And after what will be 5 months of indoors, how do I convince him to go back outside?!! His nursery/school have tried to be as helpful as possible with what we can do in the future but it’s getting him to that point that’s going to be problematic!

“My middle child is possibly suffering the most. She is social, she loves school and she is smart. She needs a break from her older sister who relies heavily on her for support socially. She’s happy to oblige her and a lot more patient than most 14 year olds might be but she needs proper conversation and her own peers. She needs a break from her 4 year old brother…4 year olds are demanding anyway, never mind throwing something else in the mix! But she isn’t getting one. She’s not being challenged enough academically and her motivation is starting to drop along with her mood. She needs that break.

“My husband was furloughed at first but returned to work and I’m left looking after all three, trying to assist each emotionally, academically and physically! Each with differing needs. It’s lonely. I haven’t heard from any of our support networks since lockdown. We’ve been left to deal with it and it doesn’t give me any hope that we will receive any support to adapt when we start easing out of lockdown. Lockdown has been hard on EVERYONE but for families with anyone who requires some form of additional care it’s harder in a different way and the prospect of moving back to normality is incredibly daunting.

I hope that the government can see that a new type of support is something that needs implemented to help families like mine cope with a situation we have never had to before.