In response to our survey on life in lockdown for families with disabled children, we asked parent carers to share their experiences. Here is Jacob’s story, as told my his mum, Teresa…
“It was really good to read the article about the lack of support for disabled children in Lockdown. It was something I would have never expected and was very disheartening to experience. It was difficult for everyone to adjust to such strange and unusual times much less for children who many are used to their set regular routines. For this to be pulled away suddenly and for the schools to not want to reach out and try and support has been dreadful.
“I felt the need to share my experience. I have 8 year old twins and my son Jacob has special needs. They attend a mainstream school which has a very high number of SEN children, also a high number of specialist teachers for SEN and they did not do as we expected at the start of lockdown and offered no immediate support for them. Of course schools would have been under pressure to navigate the best way around such a difficult time and being faced with a situation never been in before. It just seems the SEN children who obviously need extra support in school so the extra support needed to be continued at home too was disregarded at the start of lockdown.
“I felt it was a challenge to communicate with the school about the desperate need for some interaction which became apparent and needed for my son. To help children understand the sudden change in their world. My sons learning delay and not being able to understand what was going on was not easy and I knew he would benefit from seeing familiar faces linked to school to help him as he was struggling. For a simple video message from teachers who are familiar with the behaviours, melt downs these children can display with their lack of communication and frustrations, to make some instant contact to ease any frustrations which they know would possibly be happening. No support was willingly given and anything to help ease had to be initiated by parents. I had to reach out to find ways to help. I did not understand schools not wanting to revise safeguarding policies in a time of a crisis to simply gain permission from parents to make direct interaction easier between a child’s one to one support for example, for them to see familiar faces linked to their school to help them? To be able to use social media platforms as a means to reach out where needed and to be creative with the possibilities to use it effectively to reach out. The wellbeing of children or policies to adhere to being of more importance? I then realised that the laws around SEN children had been relaxed and their EHCPs not to be considered a priority. It seemed the schools used this to sit back and not to offer the support which they would know is needed by the children but were given the option to relax and they did. SEN children have budgets in place to assist with their learning and support needed in schools and this seemed to be disregarded also.
“It has highlighted the lack of consideration and inclusion with children who have disabilities. That in a time of crisis they could disregard them. Three months later the Local Authorities are only now stipulating to schools what support should be given to children who have EHCPs. There has been children who became very unsettled and upset during this time which could be been avoided if thought was given.
“I am glad to share with you. I hope the Government will be made aware of this situation, the need for it to be highlighted as a problem which it is. To help move it forward to make essential changes in the system where more consideration, awareness and inclusion is needed for children with disabilities.”