I haven’t written a blog since lockdown except on my regular Facebook page. I haven’t really known what to write. I felt I should write something profound but I can’t. I can’t speak for all those who have autism or are caring for those who do so I’m just going to write about how the lockdown has affected our family.
The first weeks were the hardest. No school. No college. All routines vanished overnight. How long would this be for? What should I tell the boys? How much should I tell them?
It felt we were all plugged into the news on a constant loop. Our only conversations were around ‘the virus’. Within a few weeks, Thomas was so stressed that he started swearing at the TV when the news came on. I told him not to look at any news on his device, we would tell him know if there was anything he needed to know. He calmed down a bit. Much of his anxiety was around completing his college course. He is so driven to get a good grade but he finds his course so hard.
There was no longer any structure to our days. I tried to create some order by setting regular mealtimes. We started off enthusiastically doing Joe Wicks’ morning classes but within weeks, we were all vaguely injured and decided it was safer to stick to the ‘daily walk’. I rather manically devised craft activities. I blew eggs (while we could still get them) which we all painted on Easter Sunday, I cut up milk containers to make papier mache elephants.
It was quite a relief when school and college started back after five weeks of Easter holidays and I no longer had to think up things to occupy the days with. But, with that came its own challenges, as the older boys have one to one support for their mainstream classes. I am certainly not up to level 3 games design!
We had to make a decision. Jonathan is working from home, he is a key worker and on calls or online from 7.30 doing long hours. I could not be there on an individual basis for each boy and I was concerned for their mental wellbeing as they were more stressed than usual. We now have our regular carers in daily, one a day who we share around with whichever boy needs support or some time to chill with someone who is not me and not one of his brothers. We also have some online, live support for the boys from college.
The dynamics in our family are complicated. All the boys have had a diagnosis of autism from the age of two. Although they were non verbal when young, they are now verbal but not able to always interact with others appropriately. Their individual empathy varies and much of their conversation revolves around themselves and their own agendas so reciprocal conversations with each other is often not possible. It has been quite wearing at times being mostly the only person who they can talk to. I had become used to quite solitary days alone while they were at school. I have had to adjust to constant noise and no time alone.
The boys are not frightened by the virus itself. Sadly for them, they have no grandparents and we see other family members very rarely so they are not missing regular contact with them. We are our own island as we have always been.
They have grasped the concept of social distancing. They comply when we go out with walking single file or waiting our turn to go through the turnstile gate into the park. Thank goodness for Richmond Park on our doorstep. It has been our daily sanctuary and of course, Thomas has been able to keep running. When he was very stressed, I worried how he would cope without running if the lockdown kept us inside.
Our life has not that changed that much. We autism familes have always lived in a socially distanced way. Our weekends are always walks with all our boys. We have never had enough babysitters to go out very often so for Jonathan and I, being home with the boys is not new or different. It is our life. It was almost ironic on my Birthday when people wished me a Happy Birthday ‘despite’ lockdown. My Birthday was much the same as it is every year, handmade cards from the boys, a walk and a takeaway for dinner. No ‘despite’ about it. We do miss galleries and theatres though but also the zoo and all the other places we usually take the boys to.
The boys have humbled me with their acceptance of the situation. Normally, we would be heading to Yorkshire next week but it is cancelled. Not a murmur of complaint. I have just rebooked our usual wonderful two week summer holiday to the same time next year. I explained to the boys why I thought this was necessary and Thomas remarked ‘I don’t want to go on holiday and have to wear a mask’ so that was fine, they accepted it without any complaint or anger.
They don’t really miss seeing their ‘friends’. They don’t really have many to miss. Most are acquaintances or people who will chat to them if they start a conversation. They don’t miss social occasions as those are few, unless we arrange one here at home for us all. FOMO (fear of missing out) is no longer present for them. They aren’t longing for friends, for girlfriends, to be in a band, to be invited anywhere like they usually are. They know that is not possible so in a bittersweet way, life is less painful for them at the moment.
We have settled into a gentler routine now. The weekdays are seperated from the weekends when the boys sleep in as long as they like and do no school/college work. We all look forward to dinner in the evening around the table together, often a source of banter and hilarity. It could never be otherwise in our house with four dynamic boys all striving to live their best lives in so many ways.
(Walk/scoot around the Serpentine on Saturday. Our first outing since lockdown was amended. )