April 2021

Welcome to Gus

I love this poem (Welcome To Holland — Emily Perl Kingsley ) because I think it explains beautifully just what it feels like when you find yourself joining a club that you’ve never given much thought to before. It talks about the deer-in-headlights shock and grief that slams into you when you realise that your ‘plan’ (and how I love plans!) has changed. And it also talks about the transformation that comes when you embrace the ‘it’s what it is’ mentality and decide to turn the unexpected into something equally beautiful.

Ten years into this journey, here are some of the things that raising an ASD child has meant to me:

Welcome to Gus.

It has meant learning more about salmon, and specifically the sockeye salmon, that I never thought I would want to know. About Archer frogs (they have froglets – not tadpoles!); the issues relating to climate change; Black Lives Matter; bees; how do we really know that the universe is infinite, so many, so, so many minecraft facts. It’s meant taking bets on what might happen next with human evolution (Gus’ bet is on pinky toes being the next to go and he spent a week pushing his toes under his foot to see how that might work). 

It has meant understanding that yes - these topics are interesting to many children, but the difference with autism is the intensity of that interest, the way they can become the sole topic of conversation for months or even years.

It has meant buying an Alexa because I don’t know what the smallest sea turtle in the world is. I don’t know to explain that yes the Roman Empire was an occupation and that’s ‘bad’ but they also did things like built roads which is ‘good?’ and it can be both. It’s meant feeling irrationally smug when even Alexa doesn’t know the answers.

It has meant raising a child who has been assessed as having a cognitive memory that places him in the top 1 per cent of the world and yet still doesn’t know where he last saw his shoes, his bag, definitely not his OPS polar fleece, and WHY are you only wearing one sock?

Yesterday it meant buying a new set of rather expensive felt pens because Gus misplaced one of them, a very specific shade of ‘violet’, and was very worried about it. Last week it meant standing outside in the rain, in the dark going through the rubbish bin to find that one very special paper plate that Gus had very quickly and distractedly drawn a face on and, at the time, didn’t seem very interested in, but is now the most important piece of art he has ever created.

It has meant learning that, contrary to many stereotypes, many autistic children feel things deeply, are supremely sensitive and care so much about other people and things. When I asked Gus this morning on the way to school why he sometimes gets upset/obsessed about objects he said “Because I care about the person who gave it to me so I don’t want to lose it and because even though I know things aren’t alive, I still have feelings for them”.

It has meant serving a lot of plain pasta and cubes of edam cheese for dinner. It’s meant begrudgingly agreeing to trial letting Gus be a vegetarian (and cynically thought this was really just a way to further reduce his food list) to then having him say, on being presented with vegan hotdogs (by the way they tasted great!) and with tears in his eyes : “Thank you for helping me to play our part in helping to save the world”.

It has meant hearing the truth, unfiltered, at all times, and creating a ‘we don’t talk about that list’ (we don’t comment on people’s size, age, colour of their skin. Yes these things are facts and interesting but we don’t need to point them out to people and yes they do already know). It has meant watching as Gus ‘learned’ this and transformed what he used to say to his grandmother “you have a lot of wrinkles, you are really old!!’ to “wow Grandma you look really young!!”. It has meant watching him manage to hold it together for a couple of seconds before then proudly announcing: “you don’t really look young, you look old, but Mummy said it’s not nice to say that.”

It has meant feeling briefing thrilled the other day at breakfast when Gus told me “Mummy you are doing such a great job!” and then comically talked with his hand to the side of his mouth “you don’t really look like you have it under control at all Mummy - but I thought it would be nice to say that”. 

It has meant building a 2 metre fence to stop Gus from absconding. Because when I say things like “Gus we can’t go into Onehunga today” he hears “Gus we are physically not capable of going into Onehunga” which isn’t true. It’s learning to say “Gus can you please take the rubbish and put it in the red bin outside now please” rather than “Gus the rubbish needs to go out”.

It has meant being proud, so very proud, of what for children of other parents may come easily – sleeping through the night (at 7), learning to ride a bike (straight into a wall and while screaming, but still……).

It has meant public meltdowns and, more often that I want to admit, they’ve been mine. And often being too quick to tell people “Gus has autism” as a way of pleading with them to not be too judgemental of my child or myself. That children learn to ‘mask’ and it’s not helpful to be told “he doesn’t seem autistic” because all I know is the lump in my throat because the walls are going to come crashing down as soon as we get home.

It has meant raising one Neurotypical child that has been assessed by every single assessment known to ASD kind by his overly anxious mother. A child who, although ‘NT’, has learned ‘traits’ from his brother (little problem, what’s a little problem? Everything is BIG and LOUD and URGENT in this house).

It has meant being extremely protective over anyone who comes into contact with my child and doing everything I can to shield him from people who might make him feel bad about who he is – but then doesn’t every parent?

It has meant questioning pretty much everything that I thought I knew and what I am doing on a daily (and sometimes second by second) basis. It has meant having blind faith that I am doing my very best on any given day. It has meant advocating for my child in a way that now makes me feel like I walk about in the world covered in scar tissue.

It’s therefore meant, being so incredibly grateful to be a part of the community that is OPS. To feel the kind of relief that I can breathe, if only between the hours of 8.45 and 3.00 and know that he is with people who respect him, care for him and will do their best by him.  It’s OPS teachers knowing that it can be a very dangerous thing to ask me ‘and how are you?’ and spending far too much time in the safe haven that is Viki’s office crying because sometimes, even with the best PR in the world, things can feel really hard.

It has meant constantly looking to learn from the autistic community themselves. Knowing that being an ‘ally’ is often empty.  To become educated on whether I should say ‘Gus has autism’ or ‘Gus is autistic’ and not knowing the answer and not have him old enough yet to know for himself (or is he?) but knowing that I want to help to feel empowered. It has meant understanding that I know my child with autism – which means just one person and that it’s different for everyone. That this is a ‘spectrum’ that doesn’t run along a straight line but that encompasses several shared elements that every person experiences differently. That there is no high or low functioning and that those terms are outdated and unhelpful for my family.

It has meant learning, constantly learning, about a different way from mine, of seeing the world. It has meant being so excruciating proud of my son, of all of my sons, and so beyond grateful that I get to be his mama.

Welcoming Gus means welcoming the concept that this isn’t a disability or a disorder – it is a difference. In Gus’ words: “It’s pretty special that I have autism, Mummy. Wouldn’t it be boring if we were all the same?”

Penelope Thompson - OPS Mum

April 2024

A few years ago, Viki asked me to write something about my amazing son Gus for Autism Acceptance Month. This year we wanted to give you an update.

The Māori word for autism is Takiwātanga, which means in their own time and space. And in reading this today, that’s my ask of You: Please find space to get to know autistic people such as Gus, and whānau like mine, because I promise it’s worth your time.  

Gus is the very best kind of person. He’s kind and curious, funny and extroverted, hyper-sensitive and hugely empathetic. He cares equally about people, animals and inanimate objects, such as his favourite penguin toy. He knows if you like him or if Autism makes you feel uncomfortable. 

If he likes you, he will physically climb and build a nest on your lap; love bomb you with the specific details of why you are so glorious…..and if he doesn’t like you, he will point at you and yell ‘not that one’!!  And what’s interesting is that he is always right. 

He is unapologetically honest, which can be both gorgeous and gut-wrenching. If he says you look good, you know it’s a fact. But he still refuses to welcome people into our home with the required ‘hi, how are you?’ - “because they always say I’m fine, and I can see that they’re not”.

He cannot yet tie his shoes, cross a road without yelling and at a full sprint, or get ready for school without putting his shirt on inside out and back to front; but he does have a photographic memory that places him in the top 1 per cent in the world. Highly verbal, he is a literal internet of knowledge: In our house we don’t ask Google, we ask Gus. He precedes any conversation with ‘can I tell you something?’ before then info-dumping to you all of the facts and figures about his latest love (currently, kākāpo).

He has big strategic plans to change the world. He is homeschooled every Wednesday and is working on his business plan. He has a start-up called Kākāpo Clay where he plans to sell his works of art to raise money for NZ Forest and Bird. He does this because school, for Gus, is tough and being there five days in a row, impossible. The lights, sounds, smells and need to sit still for Gus, “makes me feel like I’m on fire”.

He still has epically loud and long meltdowns; eats white food that’s indistinguishable from the white plate underneath. He has severe anxiety which is an interesting one as it’s not part of an Autism diagnosis, but it is a side effect of being autistic. While Gus is proud of his Autism, it’s supremely stressful and confusing to be part of a world that still constantly tells you there is no space for you here - you are not welcomed or valued.

I often feel that way too.

Research shows that the stress levels of a parent of an autistic child is similar to that of war veterans.  I’m constantly in a state of fight or flight, on the edge of burnout, and am able to get through maybe a month without having a meltdown myself where I just cry and cry. This is a scary and lonely life for me as a Mum ….while also being the most meaningful and empowering life I could have ever dreamed for myself.

I know that Gus is going to join the many autistic people throughout time who have changed our world for the better: Think Beethoven, CS Lewis, Leonardo da Vinci, Einstein, Elon, and pretty much all of Microsoft or Apple.  Change requires a change in the way we look at things – which the autistic brain excels at.

It’s empowered me to start my own business so that I have the flexibility needed. Penelope Thompson & Sons is named that because while the boys may be rubbish at PR, they are the reason I work how I work and with the clients that I do – those with a firm kaupapa. Practising what I preach, I bring Gus into my spaces, he regularly begins my board presentations with a tailored slide such as ‘why penguins are great and why you should care’.

My seeking meaning means I work as an advocate for whānau like mine, helping people to navigate the funding, working with politicians, or just creating time to talk to someone so that they feel less scared and alone. I don’t know if I would be doing any of that if it weren’t for Gus.

Gus is rapidly growing up, with just four years left of school. I’m now trying to find ways to start to let him go, give him the greater independence he craves, while continuing to keep him safe. 

That looks like dropping him a short ten mins up the road from his school so that he can ‘walk’ to school. It’s apple airtags in his shoes and trackers on his phone so he can go out for solo walks in Cornwall Park. It likely won’t look like sitting NCEA (in absence of credits based purely on bird knowledge, or indeed cage fighting). It will look like leaving home, likely into an assisted living type of apartment I will provide for him, and with some of his similar-minded peers.

We’re in the middle space now where so much remains unknowable and yet I know one thing for sure: My child is not very different to yours and we share the same hopes and dreams. I hope that he will achieve his potential. I dream that, given the time, he will carve out his own space in this world where he can valuably contribute and feel valued. 

This kid. This gorgeous, gorgeous kid. I wish that you could know him and our family.

And that’s my ask for you. Because this is Autism Acceptance Month – not awareness. Awareness asks nothing of you, whereas acceptance asks that you take the time to walk into our spaces and invite us into yours. Ask that child who is a bit different for a playdate, invite them to the birthday party, make space next to you at pickup for that parent and tell us the good you notice in our child when so often all we hear is the bad. Don’t be surprised if we cry.

Because we are here, we always have been, and we aren’t going anywhere. You need us as much as we need you. But we need to collectively make some time to bridge the space between us.

I asked Gus if there was anything he wanted to add to his story and he said this: “I want you to know that I’m not an alien, I was born this way, I can’t change it and I don’t want to”.  Imagine if we all embraced ourselves like that.

Penelope Thompson