BLOG: Neuro-diversity in lockdown by Sue Kelly
This blog is presented as part of the SEND Parenting series on Teach Liverpool, and has been written by Sue Kelly.
First of all, let me tell you a little about us. There are five of us at home; me, my husband and our three boys (or ‘triple trouble’, as I affectionately refer to them as). The boys are aged 12, 10 and 8. Three children this close in age would be challenging during lockdown for any family, even without the additional complication of special educational needs!
As with most siblings, they all have unique personalities and interests, and the ability to knock seven bells out of each other when the mood takes them. Oh, the joys of brotherly love! Being confined to the house 24/7 has the potential to turn into a stressful combat zone.
The eldest two boys were both diagnosed with ASD (autism) within two weeks of each other in October 2017. They both have (different) sensory processing difficulties and learning difficulties. For example, our 10-year-old is in Year 5, but academically is equivalent to a Reception-age child. He also displays Pathological Demand Avoidance. This is where they perceive any simple everyday request, such as being asked to put their uniform on for school, as a massive demand, triggering an extreme anxiety response. In our house this usually means we receive violent and challenging behaviour – a combination of physical and verbal abuse.
They both have Educational Health and Care Plans and attend different special schools. Both boys struggled massively in mainstream primary schools (our eldest attended two) and both received a number of fixed term exclusions as the schools could not meet their needs. Mentioning it quickly in one little paragraph feels wrong, but that could turn into a whole other blog! I can’t sugar-coat it, it was a horrific few years and we were all in a real crisis.
Then finally, our youngest. He attends a mainstream primary school and currently on the neurodevelopmental pathway, waiting to be assessed for autism.
He has trouble regulating his emotions and bursts into tears and ‘shut downs’ quite frequently. It may or may not be autism, but there’s something not quite ‘right’. But living with two neuro-diverse brothers is hard and he’s had many ‘Adverse Childhood Experiences’, which have no doubt left him with trauma, which potentially could be the root of his problems. Bless him, he’s had a tough start to his life.
Okay, so that’s a bit about us. Let’s talk about lockdown…
When lockdown was announced on 23rd March, I immediately panicked. How were we supposed to continue working AND look after three children at home? Well, not even just look after them, we were expected to HOME SCHOOL them!
My anxiety skyrocketed. I had been on anti-depressants/anti-anxiety medication for several years, but feeling stronger, I weaned myself off them in December 2019. What a bad time to have come off them, I thought. I was spending too much time throughout the day catastrophising; thinking “what if one of us dies?”, or “what if the boys fall behind at school?” These ‘what ifs’ were driving me crazy.
Plus, how could those two little words ‘home schooling’ invoke such a sickening punch to my stomach? It’s all we heard about for weeks. It featured intensely on the news, every live TV programme discussed it and you couldn’t avoid it on social media either – all those perfectly set-up pictures of children being taught at home.
I felt like a failure. The guilt was all consuming – I couldn’t sleep and I started crying again.
I wanted to come off social media and hide away from it all. But I couldn’t. If I did that, I would also have cut off my lifelines such as LivPaC (Liverpool Parent and Carers Forum) and The Isabella Trust. They are very proactive on Facebook, advertising Zoom coffee mornings/evenings (happening three times per week), virtual courses and signposting to other support available to help families with special educational needs and disabilities during lockdown.
I’m a resilient, glass-half-full sort of girl, so I don’t like to stay down for long. These sessions have lifted me up when I’ve needed it most and given me so much strength knowing that I’m not alone. I’m making the best of a bad situation and attending as many courses as possible, empowering myself with knowledge.
We’ve had varying degrees of contact from the three schools. Our mainstream primary provided me with an overwhelming number of links to learning Apps, a learning journal to post work and pictures, Youtube resources, BBC Bitesize and Oak Academy etc. I was even given a full timetable with suggestions of what learning to do with my child from 9am to 2pm. Erm, even if my child engaged with this, which he doesn’t, when are we supposed to fit our fulltime work in?! We’ve had phone calls too. It’s felt like an unbelievable amount of pressure.
Our 10-year-old loves lockdown. There are so few demands on him (therefore less stress) and he naturally prefers to self-isolate, lockdown or not. He has not left the house since 20th March.
However, he point-blank refuses to do any schoolwork. We have made a conscious decision not to push him to do anything he doesn’t want to do for the sake of his mental health and maintaining peace in the house. He is very rigid in that home is his safe place with his toys and games and school is for work. You can’t mix this up.
The other two have been struggling with boredom and are missing their friends. They have done a tiny bit of schoolwork, but this has been a real battle.
I’m not a teacher. I don’t have the patience or the ability to simultaneously teach three children with different levels of needs. In the special schools they have one-to-one support and high adult-to-child ratios. At home there is me. It’s not the same, is it?
We decided that the boys’ happiness and wellbeing is more important to us, especially at the moment. The schools have been supportive of this, but I still can’t help but worry that our children will be behind their classmates when they go back to school. This situation is not fair.
I sought help from a counsellor and stopped mentally beating myself up. I started to sleep well again. I can only do my best. If I think the boys are up for a bit of work, I’ll tentatively ask them. If I get my head bitten off or met with tears or abuse, I’ll let it go.
So, for the sake of our collective mental health, my focus has been on fun and creating happy memories. We’ve been playing games, watching movies and letting them decide what they want to do.
We are so blessed to have a big garden to play in and woods nearby. Playing and running outside calms the boys and meets so many of their sensory needs without them realising it. I think our neighbour might be fed up of throwing footballs back over the fence though!
By far, their favourite activity is baking. They’ve baked chocolate muffins, scones and banana loaf. Banana loaf is the favourite at the moment – they’ve baked two so far this week! I can tell you it takes a lot of effort on my part to stand back and not take over. They are reading the recipes and instructions and weighing the ingredients – so that’s all learning, right? And it all tastes delicious.
I helped our youngest pitch a tent in the garden and cook on a BBQ last week to take part in a virtual ‘camp at home’ world record attempt. I camped out in the garden with two of the boys and Sod’s law, it was on the wettest day of the month! The rain was torrential. The tent leaked and the bedding got soaked, but it didn’t dampen our spirits. The excitement in the tent was electric and my youngest went to sleep with the biggest smile on his face ever. It was priceless. His smile broadened further when I told him the next day that the world record had been achieved.
When we were walking in the woods the other day, my eldest started up a conversation about swimming pools and somehow this led to me teaching them about litmus paper and pH scales! Our learning has become natural and follows their interests.
This situation we are in isn’t easy for any of us. There will be lots of uncertainty ahead and anxiety for us all as we adapt to whatever is in store for us as we leave lockdown. But we are the experts on our children. Be confident that you are doing a great job with your kids. A psychologist told me years ago that as a mum I only have to be ‘good enough’. She was right and I stopped torturing myself for not being perfect – it’s just impossible.
I know it’s a cliché, but make sure you grab some time during your day to fill your ‘emotional cup’. Even if it is just reading a book, listening to your favourite music or a quick phone call with family or friends. We can’t look after our children without nurturing ourselves first. Be kind to yourself.