Life on Jupiter

Spring 2020 has announced itself with a worldwide pandemic, a lack of loo roll in London and my son declaring there are daffodils growing in our ramshackle garden. A year ago, we were wringing our hands about Brexit (now we’re just washing them), I had planted a ton of bulbs that were all pulled up to make space for the new fence, and we received Sam’s Autism Spectrum Condition diagnosis.

A good friend had the grace and wisdom to tell me, while I recounted our meeting with the diagnostic team through hiccups of tears, that the first year would be hard.  That even though the diagnosis was expected, and requested, to go easy on each other and myself. That I was allowed to feel all the things all at once. Relief, fury, confusion, fear, hope, worry, sadness to name only the ones I could articulate. There were many I could not. A relief that I could now parent with impunity. That I had permission to no longer follow the rules, a gut instinct I knew to be right but which had been so at odds with the norm was now validated. A pass to be ourselves.

Our bossy and jovial speech therapist advised that I spend some time wallowing in the often forbidden emotion of self pity, in order to really feel it, and get it out of my system. But not to ignore it. We had to run the gamut of it all to move forward. She spoke from her own experience, and was kind.

Of course I ignored her and in a bid not to feel it, I spent most of the first few months reading all of the literature I could get my hands on. I reached out to people online, I read biographies, I swatted up on all of the council’s recommended guidelines. I went to conferences on the weekend. I started to feel heavy with the weight of it, the stats, the lack of resource, the negativity. I got completely consumed by it and had to stop or risk full burn out.

Somewhere between the academic journals, the blogs written by autistic adults on ethical therapies, and the forums on Facebook I realised I wouldn’t be able to study my way out of this. Our road map was in front of us, making words out of magnetic letters on the fridge and collecting every peg in the house to create a rainbow on the carpet, singing Iggy Pop’s The Passenger on repeat.

I started listening, and crucially, began accepting help.  With the support of an amazing team in our borough, we transitioned Sam from mainstream nursery to a setting that caters for his needs within a mainsteam pre-school. We started working with the utterly brilliant and committed head teacher there and started unlearning and re-learning. We have accessed parent support groups and training, and finally after many many months of WORK (alongside, you know, normal day to day work) we secured Sam his Education, Health and Care plan and a place at a wonderful school in September.

For the first time in a year I feel like I can lift my head up, take a breath and enjoy the view. It’s amazing, in its quirky, definitely not normal way. Today, we have fifteen multicoloured balloons in the bedroom, five rainbow coloured hourglasses dotted around the house to remind us when we’re due to redo the puzzles. An assortment of magnetic numbers part way through sums, part way having adventures with their letter counterparts.  A selection of musical instruments propped up next to their corresponding letters.  Calendars and wall charts and pencils for colouring and writing and drawing, literally everywhere. On any given day our flat looks like a pintrestcraft board exploded. Chaos and order humming together seamlessly to the tune of the Go-Jetters theme song.

Its become more and more important to celebrate these moments of joy. Grab them out of the ether and commit them to a memory, guard them with ritual. We make up happy dances, and bounce around way past our collective bedtimes. We eat chocolate buttons for breakfast.

Uncertainty has become a strange and constant companion this last year, nothing has been guaranteed, and very little remains set in stone. We now have a few hard won dates we can start to build around, carefully and with an eye on the horizon, but if I were to look for silver linings they would be this. I am more equipped to navigate difficulty in all its forms, I can pivot and realign quickly and calmly.  I have found a steely sense of purpose, a kind of laser focus that has meant I can see very clearly what needs doing when. I have been forced to get clear about my boundaries for my health (physical, emotional, spiritual). I am still learning to enforce them. I know who I can rely on to help. I have learned to ask.

My son asks to go outside and see the moon (and Venus mummy), and it will be full tomorrow. We’ll put on our wellies and our coats and step into the front garden and look around for the moon rise, perhaps just above the Wembley Rainbow as its known here.  It will be cold. But it will be bright and we’ll talk about the time we saw the moon in South Africa above the mountains, and when we saw Orion. And the Southern Cross. He’ll insist he can see Jupiter. I don’t correct him, just maybe he can.

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