{"id":56579,"date":"2024-10-03T15:51:00","date_gmt":"2024-10-03T14:51:00","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=56579"},"modified":"2025-12-12T15:25:12","modified_gmt":"2025-12-12T15:25:12","slug":"shining-a-light-on-arthurs-achievements","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/shining-a-light-on-arthurs-achievements\/","title":{"rendered":"Shining a light on Arthur\u2019s achievements"},"content":{"rendered":"\n<p class=\"is-style-intro\">Since finding Sense, Arthur\u2019s mum, <strong>Samantha<\/strong>, has learned so much about how to communicate and play with her 3-year-old son. Together with their support worker, the family are enabling Arthur, who is deafblind, to explore his senses \u2013 including vocalising for the first time!&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-primary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Help a child like Arthur feel the magic of Christmas<\/h2>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"Arthur responds to his sound bar\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/aqzEUxpSBTo?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n\n<details class=\"wp-block    accordion__item\"> \t<summary class=\"accordion__title\">\n\t\t<span class=\"accordion__toggle\">\n\t\tVisual transcript of Arthur&#039;s video\n\t\t<\/span>\n\t<\/summary>\n\n\t<div class=\"accordion__content\">\n\t\t<div class=\"acf-innerblocks-container\">\n\n<p><strong>Arthur is a three-year old boy lying on the floor. As he makes noises, the light bar in front of him lights up.<\/strong><\/p>\n\n\n\n<p><strong>Samantha, Arthur\u2019s Mum talks to camera<\/strong>.<br>Samantha: He just kept going \u201cah, ah\u201d, and he just kept doing it. And obviously this light bulb responds to him and it encouraged him.<\/p>\n\n\n\n<p><strong>Nicky, Sense specialist support worker talks to camera.<\/strong><br>Nicky: It was the first time that I saw Arthur absolutely respond without a shadow of doubt. He smiled and made more and more noises. Mum and I beamed. It was just fabulous.<\/p>\n\n\n\n<p><strong>Samantha, Arthur\u2019s Mum talks to camera<\/strong>.<br>Samantha: I&#8217;m mother to Arthur who&#8217;s three years old. He has a condition called Kleefstra syndrome and he is deafblind.<\/p>\n\n\n\n<p><strong>Video of Samantha and Arthur on a swing and playing with Nicky.<\/strong><br>Samantha: &nbsp;Being a parent with a child who&#8217;s deafblind, we need a lot of reassurance and with Sense, it&#8217;s reassuring to know that I&#8217;ve got a friend to come along the journey with us. If I have any questions, any queries, well, I know Nikki will be there.<\/p>\n\n\n\n<p><strong>Nicky takes over as we see video of Nicky and Samantha playing with Arthur.<\/strong><br>Nicky: For Arthur. since Sensor&#8217;s been involved, his communication skills are rapidly improving. He&#8217;s learning is rapidly improving. He&#8217;s able to interact in different ways. All of those things are really important because it can feel very isolated.<\/p>\n\n\n\n<p>Samantha: The unknown was scary, and now I feel like I have the help if I need it.<\/p>\n\n\n\n<p><strong>Samantha talks to camera<\/strong>.<br>Samantha: Sense has helped us communicate with our son.<\/p>\n\n<\/div>\n\t<\/div>\n<\/details>\n\n\n\n\n<p id=\"skip-here\">Arthur is the star of our 2024 Christmas Appeal. Every child should feel included at this very special time of year. Please give what you can this Christmas.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/thanks.sense.org.uk\/page\/159406\/donate\/1?en_txn9=WEBB1&amp;ea.tracking.id=blog1\">Donate<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n\n\n\n<p>I\u2019d say Arthur, he\u2019s a bit of a goofball \u2013 he loves play, blowing raspberries and he\u2019s funny. Arthur\u2019s largely non-verbal, so he expresses himself with his hands and eyes. He\u2019s got very limited vision, but he can still give you a certain look when he\u2019s after something. And when he\u2019s in a good mood he\u2019ll blow raspberries as well \u2013 it\u2019s self-stimulation, happy stimming!&nbsp;<\/p>\n\n\n\n<p>We\u2019re learning more and more about how to communicate with each other. Since finding Sense, we\u2019ve learned so much \u2013 about how to play with Arthur and how to help him develop and explore his senses, including vocalising for the first time.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Heart-melting milestones<\/strong>&nbsp;<\/h2>\n\n\n\n<p>Arthur is deafblind, with limited vision and hearing. Up until meeting Sense, he\u2019d been non-vocal. But when his support worker, Nicky, introduced Arthur to a sound-activated strobe light, he started vocalising. It was incredible. He realised this toy responded to noise and wanted to experience the flashing lights. It just melts your heart to hear him.&nbsp;<\/p>\n\n\n\n<p>Finding out about his sensory impairments, our parenting handbook went out the window. We couldn\u2019t read to him and didn\u2019t know how to play together. Even when he got his glasses, he wouldn\u2019t reach out for toys. I remember the first time I met someone from Sense, it helped me realise that caring for a disabled child doesn\u2019t all come naturally, there\u2019s a lot you have to learn, to be shown.&nbsp;<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"683\" src=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-1024x683.jpg\" alt=\"\" class=\"wp-image-56581\" srcset=\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-1024x683.jpg 1024w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-600x400.jpg 600w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-768x512.jpg 768w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-1536x1024.jpg 1536w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-2048x1366.jpg 2048w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-900x600.jpg 900w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-500x333.jpg 500w, https:\/\/www.sense.org.uk\/wp-content\/uploads\/2024\/09\/SenseXmas_August24_1343-1600x1067.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p>Nicky is a Sense MSI specialist (multi-sensory impairments). She arrived into our lives with so much useful information and so many ideas for how to build a programme to support Arthur. I think the first big hit was the resonance board. Arthur absolutely loved it, especially feeling the vibrations of windchimes. He actually started to reach out and play with the chimes, which was a real milestone. You don\u2019t hear the laugh very often, but he was laughing then \u2013 and we had big smiles! It was really sweet.&nbsp;&nbsp;<\/p>\n\n\n\n<p>We\u2019re really truly grateful for Nicky and for Sense. And if it wasn\u2019t for Nicky, he probably wouldn\u2019t be where he is now, vocalising and exploring the world around him. It\u2019s been an absolute godsend. At the beginning, we didn\u2019t know what milestones we\u2019d ever be able to reach.&nbsp;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\"><strong>Arthur\u2019s overcome so much<\/strong><\/h2>\n\n\n\n<p>Arthur had a very tricky start, an extremely tricky start. He was born 10 weeks early and we spent a lot of his first year of life in hospital. There were some touch-and-go moments; it was traumatising for all of us. It was here we first got told that Arthur had Kleefstra syndrome and would have developmental delay, but no one told us what it meant or what to expect.&nbsp;&nbsp;<\/p>\n\n\n\n<p>We didn\u2019t know at that time that Arthur was Deaf. It was only when a nurse saw me reading stories to him and jingle a bell that it was suggested. He hadn\u2019t responded to the sounds at all. As he grew up, we noticed he wasn\u2019t responding to things in front of him, he wasn\u2019t tracking with his eyes. He was two years old when we found out he was blind too. He has very little vision, and it\u2019s blurry.&nbsp;&nbsp;<\/p>\n\n\n\n<p>Now though, he has his hearing aid and glasses, and they help. Looking back over the last few years with Sense, Arthur has overcome so many challenges and achieved so much. He\u2019s much more aware now, and more confident. I think it\u2019s easier for us to see that this is only the beginning. Children like Arthur, you don\u2019t realise how resilient they are. I\u2019m looking forward to him starting school in September, and just seeing what the future will bring.&nbsp;<\/p>\n\n\n\n  <div class=\"wp-block  box    is-style-textured-secondary-tint-10\">    <div class=\"acf-innerblocks-container\">\n\n<h2 class=\"wp-block-heading\">Find out more about our impact<\/h2>\n\n\n\n<p id=\"skip-here\">Read more stories from disabled people with complex needs and their families who access our services.<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/www.sense.org.uk\/about-us\/our-impact\/\">Find out more<\/a><\/div>\n<\/div>\n\n<\/div>\n  <\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Since finding Sense, Arthur\u2019s mum, Samantha, has learned so much about how to communicate and play with her 3-year-old son.<\/p>\n","protected":false},"author":26,"featured_media":56581,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[1329],"class_list":["post-56579","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-samantha"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/56579","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/26"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=56579"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/56579\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/56581"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=56579"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=56579"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=56579"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=56579"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}