Table 2

Summary of comments and responses from parents

Difficulties during pandemicFaced difficulties
  1. My son’s obsessions have taken over; his emotions have meant he hasn't been accessing any forms of learning. School provides the structure that he requires.

  2. Struggled emotionally due to lack of understanding of restrictions and guidelines that are in place.

  3. Missed the interaction with her peers and teachers.

  4. Violent challenging behaviour and increase in meltdowns

  5. Lost important academic progress as a result; severely affected emotionally.

Did not face difficulties
  1. Anxiety levels were through the roof on a normal school day, during lockdown anxiety levels have dropped incredible amounts, and she is able to actually learn now.

  2. Doesn't understand what’s happening and why school closure

Support accessed
  1. I didn't know they existed, so carried on as normal.

  2. Had family support

  3. Spoke to nursing team at school and paediatrician throughout lockdown. Also had contact with social worker.

  4. Managed as best as I could at home. Did speak to his social worker from the children with disabilities team.

Any suggestions for improvement
  1. Not really. Respite would have been great but unable to access due to shielding.

  2. More ways to cope with their behaviour

  3. Being able to see his teacher and friends on zoom may have helped!

  4. More information generally concerning emergency phone numbers. It would have been useful to have a list of names and numbers of professionals that we could have phoned in a crisis. We had a couple of times when it would have been nice to have had someone to talk to get advice and support. (Especially at weekends, when the nursing teams were not working.)

  5. School being more flexible in their times of admitting children, so she could have gone to school and informing us of what the day would look like, I have had very little information to help her return at all or discuss how things will be different