Jamie McCallum
There’s a melancholy song by Pink called “When I Get There”. It’s a moving piece describing her feelings of loss for her late father. It deeply portrays the hole that his absence has left. It’s a song that surely resonates with anyone longingly missing someone from their life.Imagine my surprise when I walked into my typically fun, extraverted daughter’s bedroom recently – normally a haven of upbeat singing and dancing – to find her in tears, whilst playing that sad song on her Alexa, clutching an old photograph of her and her friends taken during her early school years. I was confused to see that there was a real sadness in her eyes that I’d not seen before. Then, like a knife to the heart, the realisation dawned on me that she was feeling incredibly lonely.
March 21st is “World Down Syndrome Day”. It’s a time where I typically bombard the world with positivity about all things Down’s Syndrome. However, in truth, I have struggled to do that this year as it’s fallen on a period where we’ve been faced with some of the challenges that Down’s syndrome can bring.
While people with Down’s syndrome typically have a lower I.Q. than their peers, the opposite can be true in “emotional intelligence” (E.Q.). Rosie reads a room fast! In any escalating situation, she will spot our blood pressure increasing long before her siblings do! That morning in her room was one such moment. Her E.Q. was flagging up an emotion that she couldn’t yet communicate. But the absence of the ability to communicate an emotion doesn’t make it any less real for the person having it – a common cause of frustration and adverse behaviour among children with additional support needs.
All parents occasionally lament the accelerating passage of time (in our case – usually triggered by Facebook’s “memories” algorithm) and yearn to wind the clock back to a simpler time. I think it’s less usual, however, for a child to feel this way. Yet, clearly that’s exactly what I was witnessing.
That morning taking her to school I watched her through a new lens. I avoided the usual temptation to gleefully wheelspin out of the carpark having made the children someone else’s problem. Instead, I watched as she wandered somewhat aimlessly around the playground, bouncing off different groups of children like bumpers on a pinball table. Each “bumper” group greeted her kindly and returned to their conversations. I witnessed an Oscar-worthy performance – deliberately falling onto her back (as if laden by her heavy backpack) and watched as children quickly ran to help her up, before returning to their group. As she craved some meaningful interaction, any interaction, I watched her do it again.
And then again. In that moment it hit me that we are passing a point of no return where Rosie’s differences are dawning on her. As kind and considerate as everyone is – their interests, discussion topics and so-on are understandably evolving at pace, and will continue to do so. Schools have an impossible task balancing competing ideological principals. Do they remove her from class and negate the importance of her social integration in order to differentiate the work to her level? Or do they integrate her fully in the class where many discussions and topics may fly over her head?
Our positivity about having Rosie in our lives has never diminished. She can be sassy, grumpy and challenging like most children, but she adds such an immeasurable amount of mischievous colour to our world that it’s well documented that we “Wouldn’t Change a Thing”! Only yesterday, she decided to innovate her school ensemble by switching one of her shoes for a swimming-flipper. In the melee of the morning routine, she managed to smuggle out this footwear entirely under my radar. Come pick-up time, I’m sure that my stern words about not wearing flippers to school was much to everyone’s amusement. Although, to be fair – she did find a way to take “odd socks day” to a whole new level.
Rosie enjoys school, swimming and gymnastics and we can see that she is loved by all those around her in each one of these environments. However, inevitably, she progresses more slowly than her neurotypical peers. We now reflect that the early school years represented in her photograph were somewhat of a nirvana situation where the gap between her and the other children was so small as to be insignificant. She was just another playmate at that time. It was a blissful time for us, and for her, that we came to take for granted. As the years have rolled on, her peers have become steadily more aware of her condition of course, but their collective efforts to find ways to play and work together has never faltered.
Research shows us that a typical person in 2025 is exposed to more information in a day than they previously would have in a lifetime only a few hundred years ago. It makes me wonder what it must be like for Rosie to attempt to process this sheer volume of information. To take in the conversations around her. To comprehend the topic of discussion in the classroom. Even at home – where we should know better – conversation over the busy dinner table can get so fast-paced that she will eventually give up trying and scream at us…”LET!””ME!””SPEAK!!!!”
I’d love, just once, to experience the world as she does. I wonder how much harder her mind is having to work all day, every day, to try to keep up. We inevitably find, as I’m sure her teachers and classmates do too, that when she is given the space and time to comprehend, think and respond that her contributions are valid, interesting, funny and often refreshingly unique. That’s how we know, therefore, that the social benefits of mainstream integration work both ways. That said, it is understood that children like her can come to feel crushing inadequacy and low self-esteem if they experience no real peers at a similar cognitive level in their class or social circle. Wouldn’t you?
That’s why, for the first time ever, we have questioned whether a mainstream school is the right place for Rosie’s needs. However, it transpires that there is no place for children like Rosie – no place at all. Deemed far too capable for any of the miniscule number of oversubscribed funded places in special needs schools or supported base units, but with little-to-no real peers in the mainstream environment. The more we speak to other parents from the Down’s syndrome community, the more endemic this issue appears to be.
This is not restricted to school either – we bump up against this when seeking out extracurricular classes for her too. Kids like Rosie are just smart enough to be left behind. We want her to learn – because she can. We want her to have true friends. We want her to feel like she belongs. We want her to consider herself as an integrated, valid member of society. Most of all – we want for others to see her that way too. What we wish for Rosie is the same as her siblings – to be given the chance to fulfil her potential as a human being and live her best and happiest life as a result.
When Rosie was born I really thought that our life was over, and I couldn’t have been more wrong. I’ve always felt a duty to communicate that upside for the benefit of others whose understanding of people with this condition is as warped and ill-informed as mine was. Now when I think of her as an individual, my heart lifts with love and joy. But that sentiment is also stained with regret for how bad I felt in the early weeks and months and how much time those feelings stole from us both. Even now, as I describe to you some of the challenges we experience, it’s important to recognise that Rosie herself is not the source of those challenges. The real source can be more easily found by looking in a mirror. They derive from all of us. These challenges are systemic, woven into the fabric of our society.
Rosie’s potential isn’t limited by her condition—it’s limited by the world we’ve built. The systems she and her neurodivergent peers must operate within. Education. Workplaces. Social structures. It’s in these that the true barriers lie. At our own peril, and to our collective disadvantage, should we deprive our world of the value that can be brought to society by those whose brains operate differently. How short-sighted of us. Moreover… how utterly utterly bland society could become.
As Rosie has just turned 12 this year, and on World Down Syndrome Day 2025, while we embark on this new chapter of her life – our appeal is directly to mainstream society. To embrace Rosie and others like her – but not let her off the hook! To set the bar high – but offer support. To engage – but allow time to think. To employ, work, play and befriend. If we, as a society, can offer people like Rosie these minor norms that we so often take for granted, then I hope that one day, our communities themselves will benefit in the same way as our family has. For they will gain more than just other participants — they will be enriched by diversity of opinion, of beauty, of humour, and of heart. We know this, because we’ve lived it. The world beyond our doorstep has the opportunity to live it too.