Page 37 - SEN106 SEN Magazine May-June 2020
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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


































































































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