What it’s like to be different

So, right now we have it easier than a lot of parents. But we also have it different.

Watching my friends struggle through the rigours of home learning these last few months, often holding down full time work, I have been in awe. It is an unfathomable situation for many and I have written before about how much I admire my friends going through this pandemic. The education expectations have been heightened this time so there has been even less chance than last year to take time for yourself. And so in many ways we have been lucky, our son has gone to school so that he can have his routine and a differentiated curriculum. He also needs extra support like OT and Speech and Language which school have to make best efforts to fulfil under the terms of the EHCP.

We had our own mini-experience of the challenges of home learning in lockdown three. We had to coax our son through remote school during our ten days isolation. This included me sitting on the end of the sofa in a mask or shouting from my isolation bedroom to get him to engage. Obviously my husband did the lion’s share (I was ill with covid).I was amazed that we actually managed any of the tasks set. Like lots of children, he has zero motivation and two baffled parents trying to explain a curriculum that looks nothing like anything we ever learnt. So we did what we could and rewarded any effort with the iPad. He wasn’t too fussed about staying in all that time but I was very ready for the routine (and sleep that come with it) to return.

We are really privileged to get the help we need. Amongst all those people struggling to educate their children at home are many children with disabilities and special needs who don’t meet the criteria of going into school or cannot because of health risks. Special Needs Jungle reported recently on the number of children who have their “Provision Denied” in the current circumstances. Without specific actions to address this, their research suggests there may be even greater gaps in learning for these children. As such I feel a real marked difference from many of the parents I know, whether parents of children with special needs, or parents of neurotypical children.

Because he needs something different, we also happen to experience the world a little differently. There are sometimes little shocks like when I hear babies babbling. I didn’t know until much later that my son didn’t babble. He is a talkative fellow now, he just needed some extra support to chatter away to us. At times there are slights which sting, friends will listen to me talk about challenging behaviour and compare my son to their much younger child. Although I too will find it helpful to see a rough picture of child development and (ignoring the age categories), celebrate that he has reached a milestone of new behaviour. He became an appallingly bad liar recently which I am secretly celebrating as a major stage of social understanding that is completely new for us!

Photo by Quintin Gellar on Pexels.com

I don’t mean to compare my life to others, and especially not to people’s highlight reel on social media. But I share these experiences to explain that we are on a different path. It is a country road we are taking. Not even necessarily slower to get to the same spot. If you happen to be stuck in traffic on the motorway, (for example when you are unwillingly home-schooling your child and I am not,) our car may get somewhere quicker. We may even end up in the same places sometimes (for example our son may end up in a job or at university the same as any other children I know). But we are not travelling there the same way. and the picnic I packed is a little different.

This experience of feeling a little different, reminds me of what my son might feel at times. He is not really sure why he goes to school at the moment, for example. Difference can feel isolating at times. But part of my lesson about acceptance is what I see in children in his class all the time. True inclusion in society is not ignoring that there is diversity in experience, but acceptance that not everyone goes about things the same way and just getting on with the journey that you have to take.

Are you counting down until your children go back to school or will you really miss the fun you’ve been having?

Never a good time

What has 2020 taught you about planning life?

Like a lot of fans of Gretchen Rubin’s, I made a list of 20 for 2020 last December. It had already been a challenging time but during my Happiness Project I identified areas that I could spend more time on: friendship, writing, wellness. So in 2019 I made a list of things to do, things to achieve.

I had already identified that it was a challenge for me to keep on track with goals my post in 2019 I had goals so I don’t know if I was setting myself up to fail with the new list for 2020. I know that I had tried to be more specific ie. write first three chapters of my new project, rather than arbitary time goals. I didn’t know of course what challenges 2020 were about to throw me.

Like many making resolutions, I started quite well. Reconnecting with a friend in London, blogging more and having specific targets for my writing. And then, out of the blue, I became my son’s teacher as well as working from home. I got the worst bout of anxiety I have probably ever experienced (I mean who didn’t) and then a snowball of personal circumstances changed. Out of control and uncertainty being the main themes of the year.

Slowly, writing targets went way down the list. So did healthy habits like swimming and actually using gym – hello lockdown. Now I could have reviewed those goals when we first went into lockdown. Adjusted the schedule, used the million online workouts or free classes. I could have done a lot of things. But I didn’t.

I certainly have friends who were able to achieve a lot. In fact I have friends in many different boats, as I wrote about last year. For some their lockdown life seemed to bring out their drive to embrace life: friends who learnt languages, rededicated themselves to keyboard playing, made renovations or wrote books (hmm). It is hard not to judge myself harshly that I didn’t complete my list when there are these examples of productivity around me.

I learnt in a wellness seminar this year that in times of stress we all have a window of tolerance. Dan Siegel‘s term means that we have a zone that we are most effective but in difficult times some people will go more towards over-action or hyper-arousal, others will gravitate towards inaction or hypo-arousal. So in some ways this may explain how I could lack motivation when others seemed to be doing so much. We all cope in different ways. While setting goals may give some people a sense of control over their lives, for me it has often served to mark how little I have achieved and in 2020 that feeling was very apparent.

So, it may come as a surprise that I have once again set about to make a list 21 for 2021. The categories were very similar to last year and it was easy to see what would be important this year. Reconnection after months apart from love ones was a big theme. As was health after my recent brush with mild covid. But what I have also done is divide these goals into subsections under each theme, and started a bullet journal to track certain habits like reading and yoga. I have tried to break down the goals in specific and I am going to focus on each by what I can achieve month by month.

This first month is all about trying to feel well again. It is about not pushing myself too hard as I am dealing with post-viral fatigue (a few weeks in and my body is demanding I go slow.) I will try and report back on each month’s achievements here. I will also try and not beat myself up. Goals shouldn’t be punishments but a way of making our lives, as Rubin would say, “a little happier.”

Living in Isolation

This week I got to be alone for once, it wasn’t as fun as I hoped.

It is not without irony that I note I have written many times about wanting time alone. Well be careful what you wish for because this week I have been almost completely alone. Like far too many, I have had covid since last week. I wouldn’t say I am completely out of the woods but I am hoping that I have got away with a very mild case. My family of course have been here too but I am in my room in quarantine and today is the first day I have had the energy to write about what it’s been like.

I haven’t the level of fatigue as yet that many have been reporting, though I am tired because it is hard to sleep when your chest is bad, but a malaise has settled over me and a dullness in my thought. I think my mood might be related to the fact that I have been so careful and cautious this whole time. And it’s happened anyway.

Shock was my first reaction when I got the result. I was lucky in a way that I had a pretty clear cough as many people I know do not develop this symptom and in the UK we can only test for loss of smell or taste, a cough and/or fever despite the fact it often presents with other symptoms. As an asthmatic I am pretty aware of that specific tight sensation in my chest and so I knew I was a little unwell but I honestly couldn’t imagine after all the caution, I would have got it.

Despite feeling quite lousy and worried I might pass it on I have done some things that have really helped in my first week of covid. I wanted to share my list in hope they might help others.

Preparing food. I have some jars of overnight oats in my fridge which is really good to get slow-release energy and filling too. Unlike the rest of lockdown, I have not been able to go back and forth to the kitchen. (I guess that’s one positive!) I have needed less to eat anyway but not having to think too hard has been a great help.

Going second. In order to remember to clean down in the bathroom or kitchen after using it I have contrived the routine to go second so that I clean up with wipes or zoflora every time I use anything. (Having a disinfectant habit has really come in handy!) We can’t be a hundred percent sure that my boys won’t also succumb at some point but we are doing our best to follow the cleaning advice and kept my towels separate. It’s given the day structure which helps when you are literally hours in the same room.

Doing my best: Those who have had this horrible condition may be surprised that I have worked. As I said, I haven’t had anything like the levels of fatigue I thought I would, as yet. I had been working from home as much as I can anyway so had taken on some different tasks than usual, swapping out some tasks that are based in the office. This week, I have been working slowly through the grunt work of spreadsheet and record-keeping that inevitably comes with working with children’s health records. I haven’t done that much, but having a methodical task has been good for my dulled brain. I have also asked to stop early on both days so that I don’t take it too far. Work have been supportive and there is no question that if I felt worse that I would take leave.

Being mindful: I have decided to do what I can, when I can. So the first morning when I felt rough I took a shower in case I got worse and couldn’t. Probably a mix of the steam that released my cough and the fact I was looking after myself- it really made me feel better. The biggest area that I have been mindful of is enjoying my food. I have many friends now whose taste or smell has been affected and so I have been trying to appreciate the joy of eating when I could, in case this happens to me too.

Meditation and audiobooks: My concentration is shocking which may be the brain fog others have spoken about but I think probably more to do with my anxiety brain trying to work on overtime. All this time alone has given me chance to do an hour of a guided meditation, dozing a little no doubt. I have also listened to audiobooks in short bursts. Belgravia with its sumptuous Regency setting has washed over me as I lay here. There something about romantic escapism that soothes you.

Reaching out: I have told friends and family many of whom are checking in with texts. I have accepted help from people dropping off prescriptions, to knowing who to ask to get milk. I know a lot have felt they can’t do anything because they are far away but knowing they are checking on you and thinking of you helps.

Accepting uncertainty: We have all had to deal with uncertainty this year much more, or at least been far more aware that this is the state of life. You really don’t know what life will throw your way. As such, I know I don’t know the long term impact of covid yet but I think that as always, taking small, positive steps has helped me and I can only take it day-by-day.

I hope everyone out there is well, being ill as always helps us remember not to take our health for granted. And also reminds us most to rest and take it very easy on ourselves.

REVIEW: The Eagle Tree

The Eagle Tree by Ned Hayes

The Eagle Tree is a heartening novel by Ned Hayes about opening your eyes more fully to the world around you. Peter March Wong is a teenager on the autistic spectrum with a deep passion for trees. He learns about a local ‘old growth’ tree, nicknamed “The Eagle Tree” and plans to climb the behemoth. As he gets closer to the tree and his goal, he learns this magnificent tree and its surrounds will be felled for housing. This is March’s story of trying to climb to the highest tree and reach new heights in many areas of his life.

Told from March’s perspective throughout, Ned Hayes does an amazing job of capturing the cadence of March’s distinct voice, obsessively observing the trees around him. What struck me was this author has really understood the depths to which these special interests, though often learnt by rote, preoccuopy the thoughts of the person. Though it may seem like a bundle of facts, as we see throughout this novel, a person’s passion can lead to deep connections. I loved this about this novel. We talk about repetitive behaviour and special interests often as if they are a problem to be solved, whereas they can be really be celebrated.

In this novel March’s obsessions allow him to make new relationships, and as he meets others who are interested too in saving the environment, we start to see how the world opens up for him. But also that he widens the world for others, both his vicar and therapist have moments where they show how much they have learnt from him. This positive note is so heartening, as a mother of a child on the autistic spectrum I do appreciate the hopeful message of the novel. It’s impossible not to think too of Greta Thurnberg when I read this novel and her amazing work. A young woman also on the spectrum, she has used her passion to ignite the world on these pressing environmental issues. Both this fictional character and real life person achieve so much because of their neurodiversity, rather than inspite of it which is more often the story told.

Although I really felt that this novel reaches to represent living on the autism spectrum well, there are moments of incredible sadness in the novel. Perhaps because we learn of them in drips of information via March, it is upsetting to see in some areas of his life, he is not helped to understand why his actions are dangerous or could harm him. In the final chapter, in particular, I was at once incredulous and frustrated by the jeopardy in the novel.

Overall I really feel this is a positive novel which will uplift and inform people. I am passionate about trees too and learnt so much from March that I can forgive some of the sensationalism near the end. I think this was the perfect book to end the year on. It is hopeful about human endeavour and speaks to the climate emergency which should preoccupy us all.

If you like this, I also recommend another book about a neurodiverse character Elvira Carr The Seven Imperfect Rules of Elvira Carr by Frances Maynard

Rain or Shine?

Do you go out whatever the weather?

A little soggy from this morning’s walk around our local streets, I can see the sunshine has now come out too late for me. Mere minutes ago, rain was dripping off the fur on my warm but not completely effective hood on that blessed of all things, my big coat. I walk in and deposit various layers on the floor, including my sweater which is a bit damp too. My husband looks bemused at my wet hair which has clung to my face. My gear is definitely not quite up to the task.

I wish this was my view when I went for a walk

I got a lovely photo of my nephews on the wet and windy beach a few weeks before lockdown 2 started with the caption from my sister, “There’s no such thing as bad weather, just the wrong clothing.” It occurs to me that she is much more game than me, probably generally more adventurous, but she’s not wrong. And whether it’s the wrong clothing, or just general wimpiness, I don’t tend to go out in all weathers. I might write off a rainy door as one when we can’t get out.

And isn’t that the perfect metaphor for life at the moment? Learning to dance in the rain. Or at least trying to push ourselves to go out in it, even if we don’t feel much like dancing at the moment. I do love an extended metaphor (see my thoughts on swimming) but I will stop now and explain what I mean.

The last few weeks, months really, I have felt so stuck in the quagmire of anxieties about the pandemic, and changes that are happening in my life that I have hardly been creative at all. It is all-consuming to be caught in anxiety and even though I know there are things I can do to make it better, sometimes I am not doing them. So then I have to dig deep and go for a walk, meditate, try and get enough sleep. And even more, I need to direct my creativity somewhere.

Guilty confession time, though I have been carrying around my own personal rain cloud, I have found some time to be creative. Why guilt? I am shamelessly working on a new project, a few thousand words a week. I know the allure of newness is a problem. I know that I will probably end up with two large unfinished projects rather than one. But for now this my way of dealing with the weather.