Our guest blogger this month is Rachel Dixon. Rachel is a mother of a child with autism and a severe learning disability. Rachel also runs the Camden Special Parents Forum where she provides support and resources for families of children with special educational needs and disabilities (SEND).
“School is shut”. Back in March, this is what my 16-year-old son understood of the global pandemic that was taking up almost every moment of media air time, every newspaper front page and every supermarket aisle conversation. For him, in some ways, it was simple.
He is a gorgeous and handsome young man (I am biased of course!), born with autism and a severe learning disability – dependant on us, his family, to care for him, dress him, feed him, communicate for him, entertain him and keep him safe, every day and every night. It’s quite a job.
But we’re not alone. He goes to an “outstanding” special needs school and has the support of local authority social care – meaning he can go to a special needs play scheme and we can employ a carer to help us take him out in the community and look after him at home.
He likes playgrounds, swings, the London Zoo, swimming, the cinema and generally being out and about. But in March this all stopped overnight, leaving us and him alone at home. No one really knew what to do.
Parents across the country struggled to balance their own work and the home education of their children. We were told everyone was in the same boat – but were we?
Many services were quick to respond helping families to get on during the lockdown. Schools came up trumps (in most cases) with worksheets, suggested activities, online learning and shifted the curriculum from in class to a virtual school. Joe Wickes became the PE teacher for the nation and his 9am “PE with Joe” YouTube sessions were watched by millions. People made banana bread and did online yoga.
“We were told everyone was in the same boat – but were we?”
After the initial panic, after a week or two of socially distanced queuing to do our food shopping, family Zoom calls and going out only once a day, we began to fray at the seams. As did many families with children with special needs and disabilities.
Our son could not socially distance, he could not engage with any schoolwork (and there was not much provided), he didn’t understand a Zoom call and had no interest in Joe Wicks’ PE. He started to regress and lose some of the basic skills he had so painstakingly learnt at school. He was bored, confused, withdrawn.
Families like ours felt stranded. Left alone to cope without the support we so rely on.
Experience of other families
I run The Camden Special Parents Forum, together with Maria Schultz another Camden parent. We are part of the charity KIDS and our forum brings together parents/carers of children and young people with special educational needs and disabilities (SEND) to create a community for parents and to work with the local authority to share our experiences and help shape services.
Over lockdown, the parents in the forum did not feel we were in the same boat as other families. Our boats were worse; leaking or capsized!
Of course, things were different for every family with a SEND child, but one thing was clear – we were all struggling.
“Our boats were worse; leaking or capsized!”
For some, the loss of routine was devastating. The wellbeing and mental health of children and young people deteriorated, challenging behaviour increased – in many cases children became more distressed, anxious, and violent.
Some families were unable to leave their homes even for a walk or to go shopping – as the change in routine was too difficult for their child. One single parent in the forum left his flat only twice with his son. Only twice in 4 months.
School resources were provided but were often too complicated for parents of children with SEND to manage at home. For example they required too much preparation, printing, or two screens all for a very short session that their children wouldn’t even join in with. Some parents felt that it just wasn’t worth it.
Parents were extremely stressed – feeling the pressure as their children’s learning and all of their care fell on their shoulders alone. Parents became responsible for their children’s education, social time, care, essential therapies, health care, night-time support and so on. Many parents were caring 24/7 and quickly said “I can’t do this forever”.
The Camden Special Parents Forum
The Camden Special Parents Forum couldn’t help with day to day education and care but we could provide support to a community of parents in similar situations. We could also bring parents’ experiences directly to the local authority so that they knew how people were doing and what else was needed.
Throughout the lockdown we continued to “meet” with parent/carers and the local authority; holding virtual coffee mornings, focus groups, webinars and forum meetings bringing Camden Council and parents together to listen, ask questions and learn from each other.
We discussed what social care support families could have over the lockdown period, how they could use funds more flexibly to support their children, who should be going to school, how those decisions are made, what schools should be doing differently for SEND children, how to get medical help, how to get food shopping if you are a single parent with a shielded child.
We talked about rising anxiety, guilt over what we couldn’t provide for our children, nervousness about the return to school, fear over the long summer holidays without any of the usual provision, how school “bubbles” might work and so much more. We brought our real life experiences together to help each other.
Giving parents a voice
As a forum we are keen on lived experience – “If you want to know how the shoe fits, ask the person who wears it, not the person who made it.” We are here for public services in Camden to ask us how things are working and we can tell them, from our own experience. Camden services are good at asking and listening – but not always able to move as quickly to change things as we would all like.
From September, and now that our children are mainly back at school, we have come back with our usual Camden Special Parents Forum programme. We hold virtual sessions for parents every week – including virtual yoga, coffee mornings, training for parents, a Walk & Talk on the Heath (when we can), vibrant Creative Writing workshops and forum meetings with guests from the local council.
The forum has always been something that parents can dip in and out of – joining when they have the time, the energy, or when they have something they need help with or something they want to share. We are here to continue to support Camden families to find the right services for their children. We’re also here to advocate for parents and their children and to work with the local authority to make change happen – to improve our services and so to improve the lives of our children and young people.
“We are here to continue to support Camden families to find the right services for their children.”
For now, school is open. Although my son still says “shut” most mornings as he struggles to understand what is going on. We’re thankful for services and schools remaining open during the second lockdown, however we live with the fear that this support will be taken away again over night.
The services that worked to support us in a situation that none of us expected were a real lifeline. The people who asked us how things were, who listened and tried to work creatively – they all made a difference and helped by making families feel less isolated. As families, and as the forum, we are here to help inform the planning for the next stages, whatever they might bring.
If you have a child or young person in Camden with special educational needs and/or a disability why don’t you join us? Email CamdenSPF@kids.org.uk or go to our website or see what we’re up to on our Facebook page.