The build up to any half term or school holiday is, for a lot of autistic children, well prepared for. Perhaps a week or so of social stories, new timetables, discussions with your child etc. will begin on the lead up to the break up of term. Even then half terms bring such a change in routine that many autistic children or children with additional needs find the transfer from school 5 days a week to home life difficult to say the least. Therefore the abruptness of lock down and quick change around of routines and lives in general will have obviously had an effect on many of us, sending the whole world into a confused state of uncertainty.
I won’t lie, there have been times during lockdown where we have been low. Caring for an autistic child and having to explain what’s happening with the world, set new routines and keep fears and anxiety at bay for him is one thing. Combined with his own needs there are my other two children and the sudden lack of respite they now have. School being their time out and release with their own friends and space. This seems to have been a common concern for other parents I have spoken with.
Social media has been a scary place during lockdown and I have made the decision at times to take myself away from it for a couple of days here and there. However it has also been a great way of communicating and reaching out with other parents in similar situations. Having other parents that understand what it’s like to have a child with additional needs at home has been a lifeline, to be able to talk through bad days and share our own successes and funny anecdotes.
Lockdown has come with little instruction or guidance on how to handle our new way of life. The school have been great with keeping in touch and sending over any social stories or guidance that may help with the current situation with the whole family.
Before lock down life was busy and hectic in different ways. I was training for the London Marathon, running every day, working on radio and having time to complete all the other jobs that seemed to be there. When lockdown hit all of the respite running and radio gave me stopped abruptly. People have sent many messages “Make sure you have some ME time.” And I felt like screaming. How could I possibly have ME time with three young children and a husband working as a key worker. It felt impossible. With an established routine everything has become a lot more settled and I may not be marathon ready anymore but I appreciate my daily cycle or walk more than ever before.
The diversity of needs within each family both with additional needs and without has outstanded me. Some parents have spoke openly about the effect the lock down has had on their child’s mental health, the anxiety and fears whilst others seem to have flourished at home. The social element is the main worry I have. Both for my eldest and youngest who are desperately missing their friends but also my middle son as socialising is an important target for him and one we can not realistically practice in lockdown.
During lockdown I have connected with a few old friends and sharing stories and jokes from “back in the day” has kept me smiling. One of whom was Christelle one of my best friends from secondary school who, still living in London, has three young boys. Before lockdown she was waiting for news on her sons autism diagnosis and assessment. During lockdown she has started her own blog on autism parenting and Christianity called Guardians of the Precious. Here is what she has written in regards to receiving her son’s autism during lockdown.
From the blog – Guardians of the Precious.
During lockdown my son received a diagnosis of Autistic Spectrum Disorder (ASD). It did not come as too much of a surprise as he already expressed autistic traits. This stemmed from his initial diagnosis of Vein of Galen Malformation. For which he had 3 separate embollisations (brain surgery) to correct an abnormality present in his brain.
However, we still felt a sense of disappointment. Not because it’s the worst thing in the world but because we simply want what’s best for him. We are also well aware of what being labelled with an SEN can mean for a child.
Although, we must admit there was also a sense of relief as we are now able to put as many helpful measures in place. Life in lockdown with a newly diagnosed autistic child hasn’t changed much as we are still isolated and yet to receive any support. All SEN departments are operating at a much slower pace due to the ongoing pandemic. We can only keep going and do the best we can for our son and family.
Guardians of the Precious can also be found on Instagram and Twitter.
For now we will continue to take each day as it comes. I have decided not to disrupt and change my son’s routine any further until September. This is our own personal decision as a family but know many other families with children with additional needs who have took the decision to send their children back, as the places have become available.
Every family and circumstance is different there has been a lot of speculation on sending children back too early and what’s the best thing to do. I think as a parent only you can make that decision and it shouldn’t be forced on you from anybody else’s opinion. Each family has their own different needs and it’s important we support one another in whatever we choose for our own children.
Sending you much love and positivity.
The Cockney in the Countryside