Maxwell Macleod was born on World Down Syndrome Day 2014. Every year since then his mum, Molly, has written a piece for us to mark his birthday. Here is her post for World Down Syndrome Day 2022…
Inclusion has been a big focus for us this year, and for Maxwell inclusion means being in the middle of the action, surrounded by his friends and family.
He has always had a wicked sense of humour and loves to make people laugh. He’s inherently a show-off with few inhibitions and the more attention he gets the better. His favourite audience is undoubtedly his teenage sister Ella and her girlfriends, actually even better if there are boys around too. Having them twirl him, dance with him, cuddle him and generally invite him into their world is his idea of heaven.
Inclusion for us also means being part of a community where you feel you belong, where you can contribute and grow.
Although Maxwell had some wonderful friends at school, over the last year it was becoming increasingly clear that he was being left behind educationally. With his teaching partner Ramona leaving school and his peers moving up into Key Stage 2, a big leap academically; we made the difficult decision to move Maxwell from his mainstream Primary to a Specialist setting. We had no idea what to expect, we worried about him making friends, we worried about the long journey to and from school, we worried about whether he would feel included in this alien environment where he was so far away from anything he knew. As ever, these were worries that only we had, and that Maxwell took no heed of whatsoever.
He has quickly made friends with the other children (and adults) in his taxi and his class, no doubt it won’t be long before he befriends the rest of the school!
His first school report has been such a joy to read. No longer is he ‘below expectation’ for every subject, he’s simply Maxwell, with all the strengths and challenges that brings. It would seem he has brought his whole wonderful self to this new environment and is really flourishing. His teacher writes: ‘Maxwell has recently joined us, although it feels he has been with us for much longer, due to the positive role that he plays within his tutor group’. I mean wow, what a wonderful first sentence to read. She goes on: ‘Maxwell comes into school each day, pretending to be one of his favourite superhero’s! He has fantastic acting skills and enjoys the attention that he receives for this’, it seems Maxwell just wouldn’t be Maxwell without an alter ego of some kind.
As well as being socially included at school, on many levels he is undoubtedly more included in his new learning environment.
He is with a group of peers who are of a similar ability so he’s thriving educationally. Most of his classmates are older than him, but this doesn’t seem to bother him in the slightest, he’s always taken people at face value. He either likes you or he doesn’t, either way there’s no judgement on age, gender, ethnicity or background. Sometimes he doesn’t even distinguish between species – I’m sure he’d much prefer to hang out with dogs than humans, or even be one himself if he could! What matters to him is that you’re kind and thoughtful and that you notice him.
It was hard for me to feel included in his new routine at first, entrusting him into the care of strangers was so difficult, waving him off each morning wondering if he’d be okay. It took a while to get used to not having a debrief from Ramona each day and to not knowing what he’d been up to all day. The daily pictures home have helped and have given him such a sense of independence and confidence, he just seems to have grown up suddenly. He loves the hands-on curriculum and the visual timetable to tell him what to expect for lessons each day, and more importantly what he’s going to have for lunch!! I guess it’s the norm for most families, their kids telling them next to nothing about their day, but as long as he keeps coming home happy, we’re happy.
This year has been one of new beginnings, his dad and partner moved in together and now Maxwell is part of a large extended family.
Luckily for him, as well as his beloved sister Ella, he now has 3 big stepbrothers to guide him in the right direction, to show him how to wrestle, to fly kites, make fires and camp out in dens. He still loves nothing more than pretending to be a pirate, a knight or wild animal of some description, he loves animals. And there are always the superheroes. Each member of his family is now assigned a superhero alter ego, the latest teatime activity he insists on involves us stating in turn which superhero we are, putting our hands into the middle of the table together and shouting ‘hooray’ before we can eat.
Being part of the action gives him confidence, being accepted for who he is and being included makes him feel safe.
He is discovering more about who he is every day, what he’s capable of and as a result he’s more willing to try new things. He’s still such a drama queen – we will certainly need to find him a stage school soon, that or an animal sanctuary where he can nurture the animals and birds. He seems to find joy in the everyday, he notices everything, especially the quirky things most of us miss; and he will always pick up on how people are feeling. He has always had a predisposition for being gentle and empathetic, he knows if you’re upset or sad and will try and make you feel better. Holding you face in his hands, making silly facial expressions, giving you a cuddle, whatever you need to smile again and feel connected again.
And with this newfound independence comes the cheeky side that will always be Maxwell.
His speech has developed phenomenally over the last few months, not always in the way we would prefer – ‘Get out’ has become ‘Go away and don’t come back!’ all whilst wagging his finger at you (and I still need to leave the room in tears of laughter). His phrases are as hilarious as they ever were, the one that gets me at the moment is ‘calm down, calm down’ when I’m not even upset. He is experimenting with language and loves the reaction he gets when he uses certain phrases, ‘Absolutely not!’ when you ask him to do something he doesn’t want to do, ‘I Love it’ or ‘Perfect!’ when he you ask him to do something he does. We also have the odd made up words like his ‘Dinosaur Rex’ (fairly easy to guess) or his ‘Swagawagoo’ (no idea, don’t ask). He’s also working hard on the clarity of words – we now have Lemon instead of Melon, it’s just lovely to hear him engage in whole conversations and to be able to follow where his imagination takes him – well most of the time, he still has a wild imagination!
We were worried that moving schools would mean he’d lose touch with his old friends, or that they’d move on without him.
As always, we needn’t have worried so much, he has still kept in touch with some of his good friends and nothing’s changed between them. It’s so wonderful to see them together, hanging out in the park or at parties.
He wants to have a birthday party this year, for the first time ever. He’s made a list of his friends, old and new, as well as deciding the theme of the day (superhero’s) the type of balloons and tableware (superhero’s) and the kind of cake (superhero’s). It’s so good to see his confidence, watching him starting to assert his authority, discover his personality and truly feel as though he is involved in making his own life choices.
For me, inclusion means acceptance, accepting that Maxwell is growing up and that loves orange jeans instead of navy and insists on wearing a pirate outfit on a walk through the countryside.
He is Maxwell and we accept him, for everything he is and everything he might become. He seems to be quite adept at including himself, even with the teenagers he knows how to grab their attention and include himself in their space, especially where music is involved. He knows the dance moves (mostly dodgy breakdancing) that make the girls giggle and the boys cheer. He still has his cheeky smile and phrases he knows make us laugh or make us want to squeeze him in an enormous hug. He knows how to be included, but more importantly he knows how to make everyone else feel included and we will always love him for that.
Thank you for another beautiful blog, Molly, and many happy returns to Maxwell!!
