What I’ve learnt from parenting an autistic child during lockdown

So COVID-19 hit us and immediately shut our school. Was this a big deal? Absolutely. My son’s autistic and his sense of security comes from his well established routine; unannounced or unplanned change is an express ticket to Anxiety station with a stop off at Angry Outbursts along the way. All of a sudden he had to absorb and process (amongst many things) that:

  • there was no school
  • mummy and daddy weren’t going to work but still said that they’re working
  • there was a complete U-turn in iPad useage from barely an hour every other day to every day for several hours
  • he could only see his teacher and some classmates via Zoom every couple of weeks for 30 minutes
  • there was no uniform but he still had to do schoolwork

I knew that the change would be challenging for him to process. It’s fine, I thought. I’m working from home, he’ll be happy because mummy will be around more and I’ll just check in on him doing his school work in between conference calls. How challenging could it possibly be having him around whilst I work? After all, there’ll be no pressure to get him up and ready by a certain time, I won’t be rushing out of the door when it’s still dark to get the early train into the City and there’ll be no more tears and pleading for me to stay at home. I laugh now at how disillusioned I was.

If there’s anything I’ve learnt from parenting an autistic child it’s that you’ll always have a nut to crack; you’ll find a way to resolve one challenge and all of a sudden a new one has appeared and brought another for company.

Reflecting on this period of time, it dawned on me how many roles I’d had thrust upon me – roles which were full time jobs of themselves.

being a teacher

I learnt the hard way that however focused he can be, some days would be harder than others. There were days he’d complete a piece of comprehension in 30 minutes, there were other days where it’d take hours. Initially I was adamant that he needed to do at least some learning everyday; I was afraid he’d fall behind and the existing difficulties he had in communicating with his peers and teachers would be exacerbated by a lower sense of self esteem because he’d start to fall behind on his schoolwork too. There were some things I learnt quicker than others, for example, if an answer was incorrect the worst thing I could do was put a ‘X’ next to it – he has a terrible fear of failure and in his world, everything must be correct. I also had to mark things immediately – irrespective of whatever I was doing at the time – because he was so anxious to know how he’d performed despite my assurances that a focused period of concentration was more important than the result it yielded. He dismissed my sentiments as mummy niceness.

The attachment to literal meanings made comprehension questions requiring inference problematic for him. To illustrate, he had no issue finding the answer in the text of how many millions of miles away the moon was from Jupiter. But the question “how would you feel if you were an astronaut travelling to Jupiter for the first time?” completely befuddled him and he couldn’t understand how any reasonable person could answer this without first becoming an astronaut and attempting this mission. And that’s when I’d stop what I was doing because I’d be drawn into a long debate about how we can try and imagine things and it can help broaden our understanding of the world and our feelings.

I also quickly lamented how militant I’d been about iPad usage in the past. Did I think I could raise my kids relying on books and encyclopaedias when in fact digital technology is now the go to for practically every sphere of learning from the traditional maths and english to the creative, making music and designing models? As crazy as it seems, it’s true. The result? My son was so overawed that he’d been handed an iPad without a time restriction that whilst starting a piece of schoolwork, when left to his own devices, I’d find him playing games, watching music videos on YouTube and randomly scrolling in frantic bursts just in case mummy remembered the iPad usage rules and quickly yanked it away from him. The learning for me? Some days he’ll learn, other days not so much and there’s no point pushing it because I want him to love learning. I quickly shifted gears and had to create new rules overnight (his world is very rule based; it gives him a sense of security and defines the boundaries). So on those days when the classwork was on the iPad, it would be handed to him with some set rules (sites he could go on, time limits and that I was allowed to seek updates on what he was working on without retaliation that I was being overbearing) and this way, we managed to reach a happy medium most of the time.

being an employee

So how did he take to me home working? Pretty much like a child given their favourite toy but having it locked in a glass cabinet out of reach. He resented me being on conference calls such that he’d deliberately put the volume up on the television or come and stand before me with a face like thunder, arms folded and eyebrows furrowed telling me quite clearly how he was feeling. He struggled to understand the concept of home working; I’m either at work or at home – how could I be doing my work whilst being at home? And so, whether I was on a video call or trying to write, being physically present to him meant that I was accessible to him (however many conversations we had where he said he understood that this wasn’t actually the case).

This led to a feeling of inadequacy at work as the constant interruptions meant I struggled to keep up with things. Every Monday, I’d dread the discussion of what I’d accomplished the previous week and despite surface acknowledgement of my home situation, the expectations remained the same. I realised that when citing my accomplishments to my manager, this didn’t extend to ensuring I went to bed early because my son woke me up twice the previous night or massively mitigating a meltdown because I was able to intervene swiftly and find his missing Lego piece just before the entire model was crushed in rage. I was expected to absorb a larger team and get them engaged and mobilised, deliver on targets and remain a source of consultation and support for others against a backdrop of an environment wholly unsuitable for executing my various responsibilities. And I don’t blame my son for this nor for repeatedly walking in whilst I was in a video conference because actually, this is his home and I’m in his space (literally – my desk is in an alcove adjacent to his toy/activity shelves).

For the first few months, stress was the standard start to the day. I’d make plans with him the day before as to which activities he’d like to do so that I could start my working day more fluidly and calmly. But then tomorrow would come and when presented with the same activities he’d chosen the previous day, he’d be indecisive and non-committal, holding my attention at gunpoint as I stood there waiting for the ‘yes’ which would permit me to set up the activity, all the while feeling my anxiety rising as the minutes ticked on that I needed to log on or someone was awaiting my call.

I quickly had to adapt from drowning out general office hubbub to drowning out noise from the iPad, TV or piano because working in another room simply wasn’t an option for me; he’s afraid of being alone and needs me or a familiar adult nearby to reassure him. He won’t even go upstairs alone. This meant that any deep work – work requiring critical thinking such as drafting documents – needed to be completed at unsociable hours when the children were sleeping; sometimes that was 4:30am, other times it could be at 10pm.

being a parent

I thought lockdown would bring with it plentiful opportunities to be a more conscious and mindful parent. After all, being at home meant that surely my time with the children would be less transactional and military in schedule. A change from: get home, prepare meal, bathe children, clean kitchen, bedtime stories interspersed with temper tantrums and protests that they’re not tired then trudging downstairs at 8:30pm to greet my husband and prepare dinner together. In many ways it did; I loved squeezing in a quick puzzle with my youngest before departure for nursery. But I was surprised to be on the receiving end of frustration, anger, backchat and attitude from my eldest. I figured he had what he wanted with me being around more so he’d be happier, no? I battled with how to respond to the seemingly random outbursts. On the one hand, I wondered whether he was struggling emotionally with all the change and whether I should just let it go or whether I should attempt to correct his behaviour and seek an apology? If I let it go, would that mean I’m lowering my parenting guard so he gets the signal to run roughshod over any engagement techniques I employ with him? Will this undo all the work we’ve put in to setting boundaries in our home with consequences that follow? This became a daily dilemma and source of several conversations with my husband.

I noticed my son’s fuse was shorter too. He often talks to himself as he’s doing an activity such as playing K’nex or Lego and I found I was in a constant state of heightened alertness, listening out for cues of distress or frustration. He’ll say things like “where’s this bit supposed to go?” and then “oh, there you are” when he finds it. Other times, if a piece isn’t fitting, the tone of the question becomes more strained “where is that bit supposed to go?”. Cue me with an innocuous “can I help with anything?” which usually brings things back on track. Sometimes I got there quick enough to intervene; other times not so by which time his hard work would be in tatters as he’d thrown his half built structure against the wall in rage.

I quickly had to learn to resist the urge to praise or acknowledge his efforts and periods of concentration because as soon as I’d do so, he considered this an invitation to come to my desk and tell me everything about his latest construction, i.e. for a Lego spaceship, what weapons it had, what speed it travelled, what powers and fuel sources it had and more. It would feel like all my efforts to encourage a bit of independence were thwarted and the reset button on the task, what he needed to do, that I’m working and needed some quiet time, all had to be reset.

It wasn’t just at home either.

We were fortunate that because of his care plan, my son was able to attend school who were providing some respite care. This wasn’t without challenge (different teachers, different children, different structure to the day basically, change all over the shop). Some days were relatively uneventful and others seemed a (relative) roaring success – and then there were days when I was called to collect him having only returned home under an hour ago.

On one occasion, he threw some sticks and twigs collected for a nature activity later that day and one of them hit a child in the head. When I probed what prompted this, it turned out that the online learning portal was taking time to load in the ICT suite and he got frustrated with this. It was so difficult to know how to react to this but I looked to how I was coping and although outwardly things seemed to be working at a functional level, inwardly I felt a persistent anxiety of the unknown; what would the virus bring, would my family be ok, what will ‘normal’ life look like afterwards? And so, isn’t it possible that my son was experiencing something similar but unable to articulate it? He was reticent to explain what he was feeling so where my gut reaction was to chastise him perhaps because I had to leave a conference abruptly to collect him, I knew this was serving no-one and instead, I needed to try and get into his world and feel how things were going for him. Cue lots of conversations and lots of levelling with him, i.e. “I need you to help me understand what happened today so I can help you”. Sometimes it seemed to work and he opened up about his feelings, other times I was met with eye rolling and the most I’d get out of him was “are you finished lecturing me yet?”. Sometimes it felt like there was a glimmer of light we were travelling towards through our conversation; other times, the sky was so dense with clouds and mist, I couldn’t even see the way.

being an advocate

As I mentioned, my son has a care plan which means he obtains funding from the local authority for one to one teaching support at school. It’s invaluable on so many levels – he has someone who is able to facilitate his learning at his pace, knows when to divert him when he’s been emotionally triggered and the other children also get to learn without disruption. Every year my son’s plan needs to be reviewed formally and any changes recorded and submitted to the local authority. If I’m honest, I find completing the plethora of forms about my son’s autism hugely depressing.

The forms are genuinely a means to secure support for him but when you’re writing point after point about your child’s difficulties and setting milestones most parents of neurotypical children would see as unremarkable and part of usual child development, it does make me feel low and stokes my inner fears of his longer term prognosis.

And so, amongst lockdown, home schooling and juggling work, along came my first annual review of the care plan. Despite assurances from the school that they could see no reason why the plan would need to be removed because my son clearly required and benefitted from the support he was given, there remained a fear latent within me that the process wouldn’t ‘see’ him; that somehow a case may be made that he no longer required it. This may seem crazy but when you see your child learning and growing, for me at least, I can’t help feeling afraid that people might think his autism had somehow – gone. And I saw this annual review as my opportunity and duty to advocate for him; to explain what he needed, which challenges he’d overcome and which new ones has arrived. I treated the form like a brief to counsel in a groundbreaking national court case; leaving no detail spared and addressing every objective set out in the initial care plan. Over several evenings, I reviewed all the documentation since his diagnosis again, researched how to respond to the annual review and our legal rights (the plan is a legally binding document) then took a day off from work to draft my section of the plan, completing it at around 1am.

To the unsuspecting reader this may sound like overkill but I’ve spoken to many autism parents and they’ve been through very similar emotional rollercoasters at the time of their child’s annual review too.

So I drafted the form. Then came the meeting with the key professionals involved in my son’s care. I updated my section of the form again after that meeting to capture some more of what we discussed. And then I submitted it to the school and left it in the hands of the Gods (well, the local authority actually). At some point this term, I should receive its response but at least I know that in representing my son’s interests, I left no stone unturned. Hopefully we’ll be ok. At least until next year’s annual review.

what about me?

So with all these plates spinning, what about the one entitled ‘Me’?

Well, I used to have a daily three hour round commute; it was the one thing I always wished I could change so that I could see my children at breakfast time, not have to rise at 5am everyday and not leave the house in a frantic state every morning. Lockdown seemed to have granted my wish but funny isn’t it, how the grass always seems greener but often actually isn’t?

I used to use my commute to catch up with emails, read articles, draft blog posts and listen to podcasts to nourish my soul. It was my time. In comparison, I was now always at home, that commute time invisibly swallowed up in attending to the kids and any attempt to multitask such as listening to a podcast whilst washing up or folding laundry, would be interrupted by “who are you talking to mummy?”; “I’m hungry”; “this is boring, can I watch Peppa Pig on your phone?” or drowned out by noise from the TV/fighting/games that involve shrieking.

I started to feel guilty about wanting some time to myself because surely it’s every working mother’s dream to be around her kids more, no? Even worse, I started to resent my husband who is an NHS keyworker so was at work everyday. I resented that he got to go to a different environment, meet his colleagues and do something so valuable as serve members of the public at a time of global crisis. Even though I’d say a silent prayer for his safety every morning as he left the house, at times I wished I could swap places with him even for just a day so I could get a break. How crazy is that; that I’d be prepared to catch the Corona Virus just for a bit of peace?!

When these thoughts started to unhinge me, I realised I needed to make time for me, however challenging that was. I needed physical space and mental quietude to nourish myself so I decided to start going for a walk. Not to burn calories. Not to plan the next day’s activities. Just to be still and alone. Most of the time this went well, but I once returned from a 25 minute walk to a card made my by eldest son decorated with rainbows, hearts and flowers (all my favourite things) which said: “I missed you so much when you went for your walk; I’m so glad you’re home”. My heartstrings were pulled within an inch of their life but I knew it was written from a place of love and security and in order to keep being that source for them, I absolutely had to keep my own energy levels, mental wellbeing and inner self topped up too.

the highs?

This piece isn’t intended to be a downer; I just think it’s really important that the experience of people like me who are parents, carers, employees and more is shared – because if you can see what I’m going through, it may create some valuable considerations or conversation starters for when you next talk to a friend, colleague or employee who’s been juggling things during this unprecedented situation.

And yes, there have been some highs. I’ve loved having breakfast with my boys. I love the creations from junk modelling we’ve made and the baking too (even if I’m finding rainbow sprinkles in every nook and cranny of my kitchen for days afterwards). I love that I can eat dinner with them which is generally a pleasure except when they’re challenging each other with who can put the most blueberries in their mouth. I love that when either of them stand with their arms wide open and simply say “cuddle” at multiple times of the day, I’m able to oblige.

I’ve learnt lots from being on lockdown. The grass always seems greener but that’s just fantasy. Instead of wishing for things to change maybe your job, your commute or your circumstances, I’ve realised that it’s about taking stock of where you are, acknowledging the things you’re happy with and picking one thing you’d like to change – and doing it. In so doing, who cares if others’ grass seems green; we can be content tending our own meadow.

photo credit: Huffpost.com

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