What it’s like to parent a child with special needs during the lockdown
A Dubai-based mum explains the toll that the pandemic is taking on her autistic son
Lockdown is tough for every parent, no matter your family situation or health status. But for families who have children with autism or other special educational needs (SEN), the unpredictable changes in routine and restrictions on movement have an impact that puts regular struggles into perspective.
Andrea Allen, co-owner of Amazing Mums Sensory Supplies and founder of the Out of the Blues postnatal-depression support group, is the mother of Maisie, age 11, and Oscar, age 13, who lives with high functioning autism, sensory processing disorder, separation anxiety disorder and severe obsessive compulsive disorder. She shares her account of what lockdown looks like for parents of children with special needs:
“Right now, we are all exploring unchartered territory. We’ve never lived through a pandemic like Covid-19 before and we never imagined for a moment that we ever would. There isn’t a person in the world who hasn’t been impacted by current events.
“However, for households like mine where there is a child with special needs, the effects of Covid-19 are far-reaching and impact us in ways I could never have predicted or prepared for.
“Children with Autism like routine and structure; they find change extremely difficult to handle and, in many cases, continued forced change can lead to meltdowns, depression and anxiety disorders such as obsessive compulsive disorder (OCD).
“One of my biggest concerns as a mum of a child with special educational needs (SEN) is that social isolation will lead to agoraphobia in my child. Autism brings with it social-communication challenges and engaging with peers and the outside world can be a real challenge for an autistic child - but one that they work hard on every single day because, despite their challenges, people with Autism want friends and a social life. However, because this doesn’t come naturally, social isolation can seem comforting and bring with it a sense of safety and security. Add to that the fear of what lies outside and our children are perfect candidates for agoraphobia.
“Then, while the world has been panic-buying toilet roll, we SEN mums face a different problem. Like many SEN children, my son Oscar’s autism means that he has a very rigid, black-and-white attitude when it comes to the food he eats. He has eaten Rice Krispies every morning for the last 18 months, but when I recently tried to stock up on some more, the shelves were bare; I had to go to four different supermarkets before I found some. On another day we needed sausages for a cooking lesson. I popped into the meat section, only to be greeted by a largely empty room. They did have sausages but they were long, thin sausages - I knew before I’d even bought them this would be a problem. We usually buy big, fat sausages, never long, thin ones - but that’s all they had, so that’s what I bought. From the moment Oscar laid eyes on them he was angry and upset: ‘these are the wrong sausages’ was shouted at me several times. Not because Oscar intended to be rude, but because for him they were the wrong sausages and that fact was really upsetting to him, and if I’ve learnt anything over the years it’s that Autism can be brutally honest.
“Then there’s the blurring of the boundaries between home and school and the challenge that homeschooling is for an autistic child.
“From a young age we teach our children that they are sent to school to learn, and that this involves teachers, timetables, peers and structure. Then they come home and play, spend time with their families and friends, attend activities or therapies. This distinction has been reinforced every single day of their school lives. But now they are being told to go against everything they’ve been taught to believe, turn the world on its head and learn at home - their safe space, where they usually have fun and don’t have to follow a school timetable. Now Covid-19 has thrown a massive bombshell into the world of Autism and we are expecting our kids to cope. We are also expecting their parents, who are trying to support them, teach them and care for them, to cope too. Is this a realistic expectation? Quite frankly no it isn’t.
“And so we come to the impact on SEN parents. Children like Oscar, who has high-functioning Autism, will in most cases have an IEP (Individualised Education Plan) for school; this means that certain adaptations to work will be made, trained staff will be working to support the teacher but also to support the child in their learning. This isn’t happening for many during eLearning, so instead mum or dad is with them at home trying their absolutely hardest to continue to support their child’s learning in the face of objection, refusal, meltdowns, sensory overload and more. For many, before lockdown just getting an autistic child to do homework would be a challenge - add to that now the concept of home learning and there is an immense amount of pressure on the child and the parent, many of whom still have to work. For families with children with greater needs the challenges are beyond anything we experience. Many refuse to engage in home learning at all.
“For many parents home learning is creating a sense of failure and inadequacy as they try to juggle everything they have to do. For the vast majority of SEN parents, we are having to sit with our children all day, in my case 8am-3pm, while they access their learning. Even though Oscar is 13, he needs the extra support to stay on task, he needs reassurance that it will be ok and this isn’t forever, because home learning is really hard and he hates it. He needs me with him because I am his safe space in a world of uncertainty, death, germs, viruses, fake news, masks, gloves and the wrong sausages. I make him feel more secure in this strange and uncertain new world we find ourselves in.
“Now I’ve mentioned fake news I might as well address the elephant in the room - social media posts. Every single time we access any form of social media we are metaphorically slapped in the face by Covid-19. It is everywhere and people are sharing everything and anything, whether it’s fact-based or absolute nonsense. What most people don’t consider when they hit that share button is that a huge proportion of the population, myself included, are struggling to process everything that is going on in our world right now. There has been a massive increase in anxiety disorders since Covid-19 struck and many who might have been managing their anxiety before are now finding life harder than ever. This is also true for Oscar. He has worked so incredibly hard on his OCD, trying to get to a point in life where he can live a fully functional and enjoyable life (sadly not OCD-free, but he’s made amazing progress). One of our biggest challenges was hand washing. Oscar has a fear of germs and his hand-washing was out of control for a while. We’ve spent years managing his handwashing and now everywhere says he must wash his hands all the time and for a minimum of 20 seconds. This totally contradicts Oscar’s treatment plan. The constant media shower, memes, fake news and scaremongering are causing me and my children anxiety that really we don’t need to live with right now and we aren’t the only ones.
“If I could ask one thing of others it would be that before sharing anything, please make sure it’s evidence-based and factual. Then ask yourself ‘do I need to share this?’ Does it add value to anyone’s life or could it create more anxiety for others?
“The best advice I can give to anyone else who might be struggling is stop! Stop expecting perfection, stop expecting your child to do everything that is expected of them, stop putting pressure on yourself to be your child’s teacher. Your job is to be mum or dad. I’m not saying don’t engage in eLearning, but do so realistically: we all have our limitations, not just our children.
“There is a great saying that goes; ‘If a child isn’t learning the way you teach, teach the way the child learns.’ This is one of the best pieces of advice I can offer for anyone supporting a child with Special Needs, as well as for anyone struggling with the current situation.”
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