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Neurodiversity During A Pandemic – One Parent’s Experience

9 March 2021

Unbelievably we are reaching the 1-year anniversary of our move to working from home due to the COVID-19 pandemic. I wanted to mark the anniversary and celebrate international women’s day (March 8th 2021) by writing about motherhood, caring for my eldest son who is autistic and non-verbal, and balancing my career during the pandemic. During “normal” times my wife works part-time whilst the children are in school, but is the main carer for the children outside of school hours. During the pandemic she has been unable to work and naturally took the main home schooling role for our youngest neurotypical son.

Looking back to March 2020, the first lockdown was admittedly a bit of a novelty for the whole family. The weather was improving with the onset of Spring and after a full winter term in school our boys were happy to have some time at home with free time in the garden and our youngest was enjoying playing with his friends on the PlayStation. My eldest son relished in the fact that there was no pressure to leave the house, a usual trigger for his anxiety.  We spent all our time together and had fun completing jigsaws, splashing about in the hot tub and tending to the garden. We made the most of the sunny days, thinking that this family time would be relatively short term.  

We didn’t worry about home schooling during the first lockdown. It’s very difficult to home school an autistic child who has a learning disability and a very clear separation between home and school. It also seemed very unfair to a 9-year-old neurotypical boy that he had to do school work whilst his brother didn’t. Our main focus was keeping our boys calm and happy. At that point we also had the summer to look forward to and the hope that restrictions would be lifted and some normality would resume. 

The autumn term brought about a return to school, but it wasn’t school life as my eldest son knew. He attends a special school which had many confirmed positive covid cases in staff and pupils. This meant that there was little consistency or routine– a day or so in school, then a few days off, with no real prior warning. This had a severe impact on his mental health, which resulted in challenging behaviours and self-harm. He was miserable all of the time and it was really difficult to work out whether he was poorly or anxious as he could not communicate this verbally. Eventually schools closed. He missed school and the structure and routine that it brings and it was almost impossible to build a routine into home life when there are so many restrictions on where you can go and what you can do.

The pressure from schools for home schooling increased in the winter term.  I think this is the point at which life became really difficult. My wife became very poorly so I needed to take over home schooling for our youngest, whilst caring for my wife and eldest son. For about 4 weeks, every day was really, really hard. Feeling that you’re failing at everything is a horrible feeling. It was impossible to attend any work meetings – I just about managed to check my emails. I was very thankful to have an understanding line manager and the ability to use some dependents leave. My eldest son’s self-harm increased significantly, which was absolutely heart-breaking. Home schooling the youngest was awful – I really do not wish to learn anything more about the Tudors or Imperative Verbs!  

The break came when an emergency part-time placement at school was made for my eldest. Almost immediately the self-harm stopped and it felt like the boy I had lost came back to me. Now he is back in school full-time and is calm and regulated most days. There are still some residual behaviours that we are working on and he currently refuses to leave our house other than for school at the moment. Contact with the professionals who work with him has resumed (speech and language, occupational therapy and psychologist), so I am hopeful that brighter times are ahead.

Significant challenges have been faced by all over the last year, and my story isn’t a unique one. I wanted to share my experience, not for sympathy, but with the hope of spreading some awareness of living with neurodiversity during these challenging times. The news is quite rightly reporting on the impact of the pandemic on our children and their ability to “catch-up” academically. We must also remember those parents who have the worry of their children adapting to “normal” life after a year of rarely leaving the house. When we can socialise and visit the places that we have greatly missed, be kind to those who are behaving differently, they may be having a difficult time adjusting to “normal” life.