Frances is supporting our Know More campaign. She tells us how the pandemic has affected her son William and why she wants to see more research so that children like him aren't left further behind.
My son was born extremely premature and spent his earliest years in hospital. I found that a really hard time as a mother, but equally lockdown has been one the loneliest times of my life.
Our lockdown experience
For William, lockdown has turned life upside down. As a very sociable child, it has taken him weeks to process the ‘new reality’. But he has only recently been able to articulate his sadness.
It takes him 3-4 hours to settle every night and he calls for us constantly. We have also seen new and challenging behaviour. He will scream that he wants certain doors shut, or lights on, in an attempt to control his environment, because everything feels out of control. On a bad day, we stay in certain parts of the house because he can be heard at the end of the road. Forget home schooling, our focus has been keeping everyone calm.
We have been managing our own emotions, the needs of our daughter and William’s behaviour without our usual support networks. The saddest thing has been seeing a sociable little boy becoming more isolated.
As a mother I have felt terrible that no matter what I do, I cannot make it better
New challenges as lockdown eases
His stress is lifting as lockdown eases. But now we are faced with new challenges – where, when and how to get William back to school. We moved house recently and as William has an EHCP (education, health and care plan) and needs specialist provision. We have been told the usual statutory timelines around this no longer need to be met, because of COVID 19 disruptions. William’s sister has started back at nursery and William is asking when he will go back. We can’t tell him. For a child that does not like uncertainty, this is an extra challenge to overcome. It feels like no one really cares.
The reality is that social distancing will continue to isolate us for many weeks to come, as staying in is easier than going out.
Worries about the future
William has no sense of social distancing. He loves to touch and be touched. He doesn’t understand why he can’t run and hug people like he did before. The tuts he used to get for touching someone’s bag will now be even worse. William will have to learn a whole new set of rules, such as where to stand, which will take time and patience. This will make even a simple supermarket trip difficult. I also fear that all the hard work we put into helping him manage social situations like the hair dressers and dentist will get unpicked after such a long time.
Autistic children were vulnerable before the pandemic and their needs will only be greater in the months to come
We can use this as a time for change
There will be longer term implications for those with learning difficulties who have developed new anxieties during lockdown or who have missed out on the support they require.
On the upside, if professionals can think outside the box and collaborate, there is an opportunity to do things differently.