Asha* is desperately worried about the long-term impact lockdown restrictions might have on her four-year-old autistic daughter and feels she has nowhere left to turn.
“It’s heartbreaking and it’s taking its toll on my whole family,” says the mum-of-three, who wanted to speak out to highlight the difficulties she is facing living in a high rise flat with no garden during the pandemic.
The Barton Hill resident and her husband live in a two bedroom flat with their two sons, 11 and 14, and their daughter, Fatima*. They have been told their current home is unsuitable for Fatima, who has sensory needs, but they have been on the Bristol City Council waiting list for almost five years.
Now, with lockdown restrictions in place, a difficult situation has been made immeasurably worse and Asha says hers is not the only family suffering.
“It’s so hard now living in these conditions,” Asha tells Bristol24/7.
“Fatima likes to explore but, being in a fourth floor flat, that is not easy. When we take her out, she does not have any boundaries, she will go up and try to hug people, especially children. We pushed her to interact with people but now she cannot, so she is really frustrated and keeps throwing herself on the floor. She wants to play in the park, but we cannot access that.
“She gets more upset being outside but if we try to keep her upstairs, she bangs on the windows. It’s heartbreaking.”
Like many families across the city, Asha’s is suffering the financial fallout of the coronavirus pandemic. Her husband is self-employed and cannot work because of lockdown and she is trying to complete a course, a task that is rendered almost impossible with the entire family cooped up in a small flat. The financial hardship means the family cannot just buy new items or resources to help meet Fatima’s sensory needs.
Asha is worried about the impact the situation is having on her sons as well.
“The thing I don’t understand is the council has been saying if someone has a health condition, they take that into account. She has an educational health care plan (EHCP) and it states the current situation is not doing any good for her and her whole family,” says Asha.
“We want to give her the best we can, but we need support.”
Asher says the specialist school Fatima would usually attend has been doing what it can to offer support and calls regularly, but she is frustrated by the slow response from the council.
Bristol City Council has set up a web page with information on how its special educational needs and disabilities (SEND) department is the working and says its teams are working remotely with laptops and headsets to deal with emails and answer phone calls.
There is also a weekly wellbeing resource designed to be “short, evidence-based and accessible” being shared online and via schools.
The council says virtual surgeries, delivered in small groups with school staff and an educational psychologist are also being held, and it is currently trying out a therapeutic writing intervention over Zoom with the option to use this as a direct means of providing support to young people.
But Asha says there are too many families in similar positions to hers who are suffering.
“It’s taking its toll on my whole family. I’m just worried this will have a long-term effect on Fatima because she does not understand it,” she tells Bristol24/7.
“Everything is a battle and a waiting game. I know there are lots of autistic children in Bristol and with this happening now, everyone is overwhelmed but maybe they just need to prioritise sometimes. Other autistic children have access to gardens.”
Bristol City Council has compiled a list of resources and information for parents who are at home with their autistic children. Access this via www.bristol.gov.uk/web/bristol-local-offer/support-for-parents-of-children-with-autism.
Families who are part of the Bristol Autism Project can also email BAP@bristol.gov.uk for support and advice, or contact Foundation for Active Community Engagement (FACE) directly email@example.com.
*The person wanted to remain anonymous so names have been changed to protect her family’s identity
Main photo by Ellie Pipe