Mandy tells us about her families experience of lockdown and why she is backing the Disabled Children’s Partnership’s calls for a COVID-19 recovery plan for disabled children, young people and families.
We are a family of 5, Mum, Dad and 3 autistic children, Robyn, Lily and Ted.
As the pandemic began to unfold last January we felt a sense of foreboding, as although Lily and Ted have EHCP’s (Education, Health and Care Plans) we knew that it would be up to us as parents to support our children through it. We already knew the mental health support wouldn’t be there as it was stretched beyond capacity prior to COVID-19 due to long term funding cuts.
My Husband wasn’t furloughed so all educational support would fall on me but together we managed their mental health. We had a discussion before the first lock down, SEND (special educational needs and disabilities) parents learn to look well ahead for the bumps in the road, and decided to prioritise their mental health. Our two girls were exceptionally well supported by their school and academically they managed their time and study with minimum input from us.
Our son, Ted, aged 10, struggled, both academically and emotionally, he was scared we would die despite reassurances from us. He cried a lot and was worried that Daddy went to work. Ted eats non food items as a form of self-soothing and we had to keep a close eye as it has always been our concern that he would ingest something toxic. He began banging his head against the wall and generally regressed back.
We decided anything educational had to be brief and fun, we made a solar system, a volcano and binged on Horrible Histories as history is his thing. We read books he liked, spent a fortune on comics to encourage reading and paid for an online maths platform.
When the children went back to school in September, the girls happily returned but Ted was so anxious he began self-harming and saying he wanted to die, in the end we had to reduce his hours and slowly build them up – then I caught Covid. Ironically, this was the turning point for Ted because I didn’t die, which was his biggest fear. After that he began to enjoy school again and looked forward to the return after Easter. In all he has missed nearly a year of school.
This last year has been tough for my husband and I, he has worked through and I am registered disabled and a lot of the medical interventions I needed were delayed. We prioritised the need to make the best of it and plan for fun things ahead and we hope our children can look back at this time and remember the fun things that we did at home, our monthly kitchen discos were a highlight!
We are supporting the Disabled Children’s Partnership campaign for a COVID-19 recovery plan because prior to the pandemic SEND children were already being failed and we don’t want them to be pushed further back in the scramble to get all children effected by this pandemic the support they need. History has shown when cuts are made SEND children invariably are the first to suffer.
The DCP is calling for a holistic COVID-19 recovery plan that provides support for burnt out families suffering from poor mental health and social isolation, and makes up for the absence of therapies which has impacted on their physical development and opportunities to develop vital life skills.