Tales from Holland: Corona, autism and all of us

I have a complicated relationship with Holland. The complication is not the fault of Amsterdam, Rotterdam or The Hague. I’m lucky to have friends in all those places and for the opportunities I’ve had to travel there over the years. I’ve never lived in Holland. Yet, because of my son, I reside there for parts of most days.

Let me explain. Roscoe (that’s my son!) was diagnosed with a unique chromosomal disorder before he was born. He has some developmental delay and is autistic. These things are just a part of who he is. They don’t define him, except for the very many times when they most certainly do.

When the diagnosis happened, several of my friends who had experience of learning difficulties and disability sent me the poem “welcome to Holland” by Emily Perl Kingsley. It describes preparing to go on a fantastic holiday to Italy. You read all the guidebooks and make exciting plans to visit the Coliseum. Then as the plane lands, the announcer comes on and says “Welcome to Holland”. You go through all the stages of grief and you’re angry that you’re in the wrong place. All your plans and your learning of Italian is for nothing.

Then slowly you see that Holland isn’t a cesspit of disease. In fact, it’s nice! And you can learn Dutch and get maps and figure out how to navigate it and how to fit in to this new, unexpected world. I’ll let Emily tell you the rest, because she put it so beautifully in that poem:

“It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned..

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

I regularly crave and mourn a lot of things about Italy. I’d love to be one of the “normal” parents, for whom sports day is a joyous occasion and not one where you go home and cry. I’d love him to get invited to all the birthday parties (and on the rare occasions that he does, it’d be great if he could last five minutes before he hits someone or asks to leave because of the noise). I’d love to do play dates that don’t end in stress and humiliation or play football in the garden.

But do you know what? There are many brilliant things about Holland. Roscoe is a vessel for so much kindness. The way people in his school and his community treat him with such care and affection has taught me so much. Through him, I’ve learned how to swallow my ego and express gratitude in a whole new way. I’ve worked hard to build up a level of financial comfort over the years, but I now have a new-found and visceral appreciation for what vulnerability looks like. When I campaign for social justice or the welfare state now, it’s no longer for some abstract idea of fairness that applies to “other people”. It’s for me and him. His future is not just in our control as parents. We’ll always be reliant on help and it humbles you.

The way he sees the world is pretty unique. He’ll often miss the bigger picture but he can find beauty in some tiny detail. There’s this one particular light in the Debenhams lighting department that we regularly visit and the joy it gives him is so infectious. Seeing it is like a pressure valve releasing in his head (it’s also hideous though and we have SO many lamps, so the answer is no!). We can whizz past any outer London station on the train at speed and he’ll tell you, just from the colour of a fence or a particular building, if it was South Croydon or Purley or Balham without a second’s hesitation. He might have a glittering career ahead as a train route planner, or – my personal hope - as a maverick card counter, touring the world’s casinos.

Parenting my only child with a different playbook has been the making of me. My work for the last decade – through books, talks and workshops - has been about helping people get as obsessed with productivity as I am, but by re-evaluating what success might look like for his life, I can’t fail to look closer to home. I think I’m less ambitious because of him (although perhaps also a natural path as you head from your 20’s and 30’s and into middle age?) but happier as a human being, rather than always needing to be a human doing. I’m certainly a lot more grateful and content for everything I have in my life, too. Holland isn’t what anyone plans, but it’s certainly been the making of me.

One of the classic things with autism that will guarantee a meltdown is changes to the routine. Yet the last few weeks I’ve seen very little of that. Sure, there have been moments of high anxiety, but on the whole he’s remained surprisingly calm. He was anxious that we could no longer visit the Sea Life Centre but was reassured when we were able to ride past it on my bike.

“It’s still there, though”, he said.

“Yes, chief. It’s still there”.

What’s been fascinating in the last few weeks has been how much he’s grown. His mum texted me today to ask if I’d noticed how much more confident he was in conversations with neighbours or with people in shops. Yes! His language and communication skills seem to be on a fast track right now. He’s chattier than normal. Most of it even makes sense – proper conversations! You spend half your time as a parent of a kid with autism attempting to adjust everyone else’s world to be more like Holland.  

Well, now we’ve all accidentally adjusted to what he’s comfortable with. Mummy and daddy aren’t rushing around so much. He’s at home with us more. He’s still at school three days a week, but there are only a handful of people in the class. The playground is quiet so he can explore without getting bumped around. He doesn’t miss his friends, because he’s more interested in adults and babies and specific cats and funny dogs. The roads are quiet when we walk around. No one is rushing him because they need to be on a call or out the door. We are enjoying digging in the garden, while we’re grounded in every sense of the word.

And now here we all are in Holland. In truth as a 50-50 co-parent I flit between Italy and Holland most of my life. So despite being a tour guide for the place these days, I’m discovering my own Holland all over again and mourning so many of the things that are lost. Every Ticketmaster refund email is a sad realisation of a summer snatched away from us. I could probably do with the cash though, given that businesses like mine don’t thrive in long recessions like the one that’s ahead. Crumbs of comfort but also a reminder of the excesses that we’d all come to view as ‘normal life’.

I’m appreciating Roscoe’s blissful lack of awareness of this pandemic and my ability to see the world as he sees it. Appreciating him more. Appreciating the blossom on the trees, my new Saturday fire-in-the-bbq ritual, my hammock, the sunshine. My incredible work colleagues, the co-operation, ingenuity and commitment to the cause. Noticing the bigger questions buried in the stasis. The little tiny things being the big things even more than ever before.

So then. What if we’ve discovered that the Rembrandts and tulips are all we need? What if we can come out of this with a world moulded to be permanently kinder, slower, more thoughtful and more accepting of the vulnerabilities of others and ourselves? We’ve certainly shown that we have the power to - if you hadn’t noticed we’ve just ended rough sleeping overnight. We’ve halted much of the pollution that we were told was an inevitable part of the ‘system’ because suddenly it was this generation that depended on it all changing and not some mythical future one. And no one takes the NHS for granted anymore.

These are undoubtedly awful times and there are likely bigger and unimaginable challenges ahead. But somewhere in all of this, perhaps we need to start playing with the question:

“what if this might be the making of us?”.