Page 37 - SEN106 SEN Magazine May-June 2020
P. 37
if she meant Down’s syndrome, to which she replied: “Yes, I think your baby has got Down’s syndrome”. Then just as quickly as she had emerged, she vanished behind the curtains and left me alone to digest this information for an hour. As it happens, it was misinformation as Lucy does not have trisomy 21, or Down’s Syndrome. Unbelievably, though, this wasn’t the last time she would be labelled with it. Over the last ten years, we have had several doctors wrongly assume her diagnosis based on appearance alone and, more alarmingly, strangers have run up to us when we were out shopping to pronounce that they also have “one of those” – a “Down’s” cousin, sister or uncle in their family. It’s like a misplaced “welcome to the club” greeting, which can be particularly poignant as, in many ways, this would have been a much easier outcome for us. I’m a firm believer that all children are different and, especially for those with a syndrome diagnosis, it is important to see the human rather than the condition. There’s no doubt that for me, being part of this group would have helped at times. Deceptively different In the early days, despite her very small size, Lucy was just like any other baby and even though we got her diagnosis within weeks of her birth, to the outside world she was no different. I wish, looking back, that I hadn’t known for the first year but then at six weeks old, she was also diagnosed with hip dysplasia and placed into a Pavlik harness that kept her in a spatchcock chicken position for two months, so there was no blending in at mother and baby group for us from then on. Here again, the judgement spread through the group like a fever, as if Lucy’s disability could be catching. Fear, and possibly guilt at the relief they felt, caused the other new mothers to treat me as a pariah, which further added to my feelings of isolation. Perhaps unsurprisingly, I suffered a breakdown when Lucy was four months old. They were dark times indeed and I am thankful for my strong family, as the support just wasn’t offered by any of the formal systems that really should have stepped in from the time of Lucy’s birth. As the months progressed and the milestones remained unmet, Lucy’s disabilities began to reveal themselves little by little. The subtlety of how this was referenced by medical professionals seems darkly humorous, but I rallied against it at the time. “Developmental delay” wrongly suggested she’d “get there in the end” – that things would develop but just take a bit longer and that as a parent, I needed to be more patient. At around two years old when speech and language therapy started, the learning delays were focused on her communication ability. Simple turn-taking through play therapy was supposed to create building blocks for speech, which in Lucy’s case has never come. This relied on Lucy being interested in engaging with a particular toy and wanting to interact with the human The judgement spread through the group like a fever, as if Lucy’s disability could be catching About the author Samantha Bowen is a parent to a child with severe learning and physical disabilities. As Museum Development Officer for Kent/ Medway, she established a project (and a practical toolkit) to improve museum access, and the museum experience, for children with SEN and disabilities. The charity Learning Disability England has been involved in facilitating this article. learningdisabilityengland.org.uk @makedoandSEND ■ The SLD label doesn’t do justice to Lucy’s cunning.. senmagazine.co.uk SEN 106 37 Learning disability