‘We have to fight for everything’ says parent
Parents in Sussex have shared their lockdown stories with us.
Bev Cohen, of Brighton, and mum to Liora, 13, who has complex needs and epilepsy, said there have been times of real desperation and a combination of emotional and physical exhaustion. “Liora needs 11 doses of medication administered every day and constant attention,” she said.
“Then there is the endless worry for her safety. Nobody in the government seems to understand about our situation.
“There’s an increased feeling of isolation because this isn’t being taken seriously.” Another parent said: “We just felt we were beginning to cope with life with a disabled child when lockdown happened. Suddenly we were on our own. It has been exhausting meeting Keira’s needs and those of her baby brother. I feel completely isolated and can’t imagine when this will end for us.” One parent said the impact has been huge with no break from caring. “It’s really, really intense and quite overwhelming and you’re just left to it,” they said.
“No-one seems to want to have the debate or talk about those with children with complex needs and how they’re dealing with it.
“It isn’t just home-schooling it’s living, breathing physio, communication, lifting, feeding, stimulating, interaction, trying to keep yourself sane, home-school another child. “The list is non-stop and endless and no one to help or make you feel like they actually care by checking on you.”
Barry Imray, from Storrington, whose 15-year-old daughter, Georgia, has cerebral palsy and goes to Oak Grove College in Worthing, said: “As a family we have just about coped! Apart from phone calls from school and other local professionals who are connected to Georgia, we have had no outside help since lockdown until four weeks ago when my eldest daughter returned from maternity leave. “Respite will start again at the end of July which is a blessing for us! Yes, I can agree with a lot of families in a similar situation to us that you do feel abandoned, and left to cope on your own. “Thankfully I am on furlough so it’s been a little easier. If I’m brutally honest we have to fight for everything.”
But mum Leonie Taylor, from Felpham, said she has been supported by her son’s school, St Anthony’s School in Chichester, and local charity, Parents and Carers Support Organisation (PACSO) throughout the lockdown.
She said: “My son, Nate, 14, has autism and he is fortunate to attend a fantastic school. They have supported home learning with phone calls, emails and masses of online resources and activities.
“My youngest is in reception and his school also has provided excellent online learning resources.
“Nate was offered a space, once a week to return back to school but because of all the changes and it not being frequent enough we chose to keep him at home. We didn’t feel that he would cope and we are trying to manage anxiety levels and get through each day as positively as we can.”
She said her family has had to work hard to manage anxiety and behaviour – and also to create a new routine. “Home-schooling has been full of challenges and exhausting at times – 9am3pm five days a week,” said Leonie. “But there have been so many rewarding moments – our rainbow moments.
“We haven’t had any respite and so we are now managing everything as well as supporting his brother and trying to keep things as normal as we can. We are very fortunate to have had the amazing services from PACSO in Chichester. They have provided sensory packs which have been hand delivered; online activities and virtual activities as well as video calls. “The boys have had four calls a week, between them, with different play leaders which has been such a help. “Seeing familiar faces and playing with someone who isn’t a family member has been a huge support and has kept Nate talking.
“We are so thankful for all their help, support and care, they have made such a difference to our family!”